tag:blogger.com,1999:blog-69228268706814485592024-02-22T11:19:49.729-08:00Juvenile Arthritis,our family affairAnonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.comBlogger52125tag:blogger.com,1999:blog-6922826870681448559.post-25930196553592183042016-01-28T21:47:00.000-08:002016-01-28T21:47:26.235-08:00Piecing the Puzzle<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> It’s getting old, I have to admit.</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My son and I went for another check up with his rhuematolgist yesterday, to see where we were at and to find out whether or not the changes made to his drugs regimen have made a difference in his overall well being. You would think that after dealing with this disease for 10+ years things would get easier, but just when you think you’ve got this arthritis thing figured out, boom, here’s another plot twist you haven’t dealt with before.</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBKoEI_BPG_SRc_UIYfRQ2fkpos3iq3RCYcJ1-zgT7gnUO9xQiOCJl5DmfKBMy2rVsURNPSMi1agE-kKgqVs3kxGoQ9UGCtMdpkFRjLZKG6SGkQi5X9fWaAUw8f8deLCLrB68IAJfXT34X/s1600/IMG_6485.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBKoEI_BPG_SRc_UIYfRQ2fkpos3iq3RCYcJ1-zgT7gnUO9xQiOCJl5DmfKBMy2rVsURNPSMi1agE-kKgqVs3kxGoQ9UGCtMdpkFRjLZKG6SGkQi5X9fWaAUw8f8deLCLrB68IAJfXT34X/s320/IMG_6485.jpg" width="320" /></a></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<b id="docs-internal-guid-bba4787a-8be0-431f-3944-250ee8cfc504" style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> At home we haven’t seen a lot of improvement when it comes to him feeling well. Despite the relaxing Christmas break he is still missing a lot of school and he really cant afford that at the moment.</span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> It’s like a complicated puzzle that we are trying to figure out. So many components and so many different ways to approach it, but so far we haven’t solved it yet! </span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I have to give big credits to our wonderful doc. I know it is her job, but she goes above and beyond to push, puzzle,figure out, pull strings and think outside the box to help us make my guy’s life easier when it comes to getting him well. Today she phoned me at home at about 7.30 pm, just to follow up with something we had discussed yesterday. I so appreciate her.</span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> To summarize: he has a virus plaguing him. The virus makes him feel sick. It is bearable but when he has to take his Methotrexate he gets so sick he can’t function for at least a day (Enbrel goes better, but is also bugging him). For this reason some other drugs where also discontinued. He has had two rounds of heavy antibiotics to try and get rid of the virus, but they were not successful, he still is testing positive for it. Now the doc has decided to discontinue MTX as well, to see if he will feel a bit better or at least does not have to miss that much school. He is referred to a G.I. specialist to try and get to the bottom of his stomach problems.The waiting time is 4-6 months. In the mean time we will try one more round of slightly different antibiotics to hopefully come one step closer to kicking this virus to the curb. In the mean time, this path he has to take is compromising his arthritis treatment. His joints have definitely been worse, but they are not great either at the moment. So….long way from being where we want him to be. </span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> He is getting frustrated and understandably so. He’s 17. He wants to hang out with friends, be normal, not having to feel sick and not always having to take medication. Here is to hoping we can soon turn a corner and things are getting a bit easier for him. </span></div>
<br /><span style="font-family: Arial; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;"> And they girl child you may ask? She is doing wonderful! It’s wonderful to see her doing her thing!</span><br />
<span style="font-family: Arial; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;"><br /></span>
<span style="font-family: Arial; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;"><br /></span>
<span style="font-family: Arial; font-size: 14.6667px; vertical-align: baseline; white-space: pre-wrap;"><br /></span>Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-27973847928985292222015-12-09T22:18:00.002-08:002015-12-09T22:34:36.616-08:00Long Haul<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> December already….and this is only my second blog post of the year. </span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Not because nothing worth mentioning has happened, just because life is hectic and it has been a while since I’ve had the time or the energy to write an update!</span></div>
<b id="docs-internal-guid-78765e6f-8a6f-0158-3450-347ce683acd6" style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Our family has moved from an acreage to a nice new house in town. At times I miss my acreage but the convenience of living close to work and school, plus our beautiful new house totally makes up for that. No more scary drives home, no more maintenance to our cute but older house, just a nice clean convenient fresh start. Moving from an acreage to a house in town meant purging,purging and purging. You would think after moving an entire household to a different continent would have taught us not to accumulate too much stuff….but it didn’t!</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> My beautiful girl has graduated from high school and is now just wrapping up her first semester in college. Her goal is to become a teacher, bachelor in education, with social studies as a major and art as a minor. She’s living in residency and she is made for college. She loves it, works hard and does great. Her health is stable so that’s wonderful.</span></div>
<div dir="ltr" style="margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: "arial";"><span style="font-size: 14.6667px; line-height: 20.24px; white-space: pre-wrap;"><br /></span></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.6667px; font-style: normal; font-variant: normal; font-weight: 400; line-height: 1.38; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBzXbiYoHKG8kd1toCbr6MrMGZyPTXlIKiBtElcEC910M5Y0tpmEP3zMPa9MNGSrWbuGl1rMKn63fRY4uXCg93yMSyl7OIS0PlBfENA1wxKF7FfjO89xtbp2iekoUAneDLfS4hoGRQg4Hl/s1600/IMG_7251.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBzXbiYoHKG8kd1toCbr6MrMGZyPTXlIKiBtElcEC910M5Y0tpmEP3zMPa9MNGSrWbuGl1rMKn63fRY4uXCg93yMSyl7OIS0PlBfENA1wxKF7FfjO89xtbp2iekoUAneDLfS4hoGRQg4Hl/s320/IMG_7251.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> My boy, he just turned 17 last week….he’s not quite where he would like to be when it comes to his health. He has an after school job, his social life seems to be busy, he played football for the season and seemed to really enjoy it. No issues there. </span></div>
<div dir="ltr" style="margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: "arial";"><span style="font-size: 14.6667px; line-height: 20.24px; white-space: pre-wrap;"><br /></span></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.6667px; font-style: normal; font-variant: normal; font-weight: 400; line-height: 1.38; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1onq6RLlXX0pJFrCvhyIgaeUJ15scCKqMTsSGyDT4fBaCFJybNukEUTt5pMAEzmW1ZhyDYt2-4yVo2_1uFbayajtYuxXab6TU1e0fDWvnvglbbRmPhkIKo9UCcwxAGPLh-8g00SggPIh-/s1600/koen+andI.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1onq6RLlXX0pJFrCvhyIgaeUJ15scCKqMTsSGyDT4fBaCFJybNukEUTt5pMAEzmW1ZhyDYt2-4yVo2_1uFbayajtYuxXab6TU1e0fDWvnvglbbRmPhkIKo9UCcwxAGPLh-8g00SggPIh-/s320/koen+andI.jpg" width="320" /></a></div>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> He misses about a day a week of school because he feels miserable. Over the summer we have been doing a lot of digging to see what the underlying causes for his physical discomfort may be. He has been examined by an immunologist,we tried eliminating certain foods from his diet, blood work, urea-breath tests and re-tests, he has had a dexa scan, he has done a breathing test, has had MRI’s done of his wrists, has worn a splint for his wrist, a check up with the ophthalmologist,luckily his eyes are clean...probably a bunch of more things that I can’t even remember. </span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> His blood work showed he has a bacteria in his system that can cause nausea and discomfort. He has been treated for that, twice, with no success. He starts to now be physically sick after he takes his Methotrexate ( Chemo). His specialist is worried that the bacteria is impacting him more than the chemo is, but another round of antibiotics is not recommended ( and it is a nasty cocktail, 3 different pills, twice daily for a week. those pills look like horse pills.) but losing this much school is also not desirable. It is also impacting the treatment options: in hopes of preventing some nausea the doc decided to lower the Methotrexate dose and discontinued the Sulfasalazine. A bonus for him, because he hates taking his pills with a passion, but potentially not so great for his arthritis, but we shall just wait and see. At his last visit his joints were fairly clean so lets hope we do not get a set back. His hands still look bad, but there is no fluid in his joints.The swelling that is visibly there is permanent; his knuckles are deformed. It bugs him but for now there is nothing they can do about it. Maybe in the future if and when his arthritis is controlled, and he is done growing, surgery may be an option. The doc has referred him to a gastro-intestinal specialist to see if there are options to tackle the bacteria that is wreaking havoc on his body at the moment. In the mean time; school is hard and demanding. Being sick so often and always having to come from behind and having to catch up is starting to take its toll. Long story short: not good. </span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Christmas is coming up and a new year is approaching, let’s hope next year will be the year we find a solution that works for my boy, he sure deserves a break.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> In the mean time: have a wonderful December month and may the new year bring nothing but good!</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhuDcLEkkY2ehOEPoqsGeOPIf2O2n2_S9Xo7hDOBWv7iWnZx4OqL4c-ZAnxSfEsa4blKEkpBW_N0fzuILLLAXV2h-8rjcrfbvVKNYyXhUxaps3s44_HCs_CulensKZD2plTVP8CO0h2131/s1600/IMG_6005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhuDcLEkkY2ehOEPoqsGeOPIf2O2n2_S9Xo7hDOBWv7iWnZx4OqL4c-ZAnxSfEsa4blKEkpBW_N0fzuILLLAXV2h-8rjcrfbvVKNYyXhUxaps3s44_HCs_CulensKZD2plTVP8CO0h2131/s320/IMG_6005.jpg" width="320" /></a></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com2tag:blogger.com,1999:blog-6922826870681448559.post-30272025358674936632015-01-16T15:14:00.000-08:002015-01-16T16:16:43.441-08:00Summary <div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> First blog entry of 2015, wishing you all a healthy and happy year! </span></span></div>
<b id="docs-internal-guid-5fd33daf-f4fd-bb12-a1c9-38bf95a67b31" style="font-weight: normal;"><span style="color: blue;"><br /></span></b>
<br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> The Holiday season was a nice break to recharge and we were all spoiled pretty good! </span></span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;">I always love it when routines turn to normal again though, I thrive best with a regular routine!</span></span></div>
<b style="font-weight: normal;"><span style="color: blue;"><br /></span></b>
<br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> My daughter is in the middle of writing her exams. Working hard and stressing much, but putting in loads of effort. Next semester will be a bit easier for her!</span></span></div>
<b style="font-weight: normal;"><span style="color: blue;"><br /></span></b>
<br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> My son and I went for his check up yesterday. He has not been well for months and is missing a lot of school so we were hoping for answers and change. We spend 2 hours discussing his issues with his specialist and she agreed changes were needed.</span></span></div>
<b style="font-weight: normal;"><span style="color: blue;"><br /></span></b>
<br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> When your summary sheet is not providing enough room and when you need two pages of new prescriptions, I guess you can say we all have work to do!</span></span></div>
<span style="color: blue;"><br /><span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"> Trying to accurately remember all we are going to do:</span></span><br />
<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"><br /></span></span>
<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"><span id="docs-internal-guid-62f77316-f4fe-aa31-87ef-97e732c56da4"></span></span></span><br />
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;">Almost 2 years on prednisone without much result. Time to try and wean him, because in the case of this drug, if it doesn’t help; it can hurt him. He needs to do a DEXA scan, where they check his bone density. Prednisone is known to decrease bone density so we need to make sure he won’t have to deal with that.</span></span></div>
</li>
<li dir="ltr" style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;">Oral chemo ( MTX) makes him sick, nauseated to the point where he misses a lot of school. The doc suggested that if it is the MTX that makes him sick, we may have to consider the injectable form, it seems to cause less nausea. In order to rule out other potential causes of his nausea, he needs to have his bowels checked to see if he is not constipated. They have already taken a bunch of x-rays yesterday, to see if that is the case. </span></span></div>
</li>
<li dir="ltr" style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;">A lot of stuffiness and respiratory discomfort is also one of his complaints. The doc found his septum is crooked and the passageway is very narrow. Also, as a young child he has dealt with a lot of reflux issues. Newer studies now show there may be a relation between that and respiratory issues. He may be predisposed to asthma. Another visit to an allergist is recommended, if that does not give us new information, an ear nose and throat specialist is next. He also has to do a special blood test that will show something about his reflux and acid levels, and how they currently may be impacting him negatively.</span></span></div>
</li>
<li dir="ltr" style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><span style="color: blue;"><span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">His fingers still look horrible, they have not gotten worse but also not better, since he started biologics more than a year ago. New x-rays were made of his hands and MRI’s are ordered as well….3rd set in 2 years. The biologics he is on now are TNF blockers, (tumor necrosis factor) they basically try to trick the immune system so it stops attacking itself, by blocking these TNF, and at the same time practically shutting the whole immune system down. This approach seems to be not working for my son, so a whole different strand of drugs may have to be introduced. But before we make that change, we will give this type one more solid chance. Creating as much opportunity </span><span id="docs-internal-guid-62f77316-f4ff-71b3-33a7-1a53470cda8c"><span style="vertical-align: baseline; white-space: pre-wrap;"> for success as possible,</span></span><span style="line-height: 1.15; white-space: pre-wrap;">we have to up all his meds again, add some discontinued ones back in to the mix and be very rigorous and consistent with the administration of them. </span></span></li>
<li dir="ltr" style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><span style="line-height: 1.15; white-space: pre-wrap;"><span style="color: blue;">The OT lady mentioned again we may have to start considering splints he can wear at night, to keep the range of motion in his hands as good as it can be.</span></span></li>
<li dir="ltr" style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><span style="line-height: 1.15; white-space: pre-wrap;"><span style="line-height: 1.15;"><span style="color: blue;">If we see improvement with all his issues, we may stick with this for a while, if we don’t we have to start from scratch with a new approach. Our next clinic visit will be in April, in the mean time we can hopefully get most of the other appointments done.</span></span></span></li>
</ul>
<div>
<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 17.25px; white-space: pre-wrap;"><br /></span></span></div>
<div>
<span id="docs-internal-guid-62f77316-f500-caf5-9f1b-c0505a3aac5b"></span><br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span id="docs-internal-guid-62f77316-f500-caf5-9f1b-c0505a3aac5b"><span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"> <span style="color: blue;"> For the first time my son has acknowledged that in fact No,he is not doing well. The doc asked him very direct questions and he really had to think about how to answer them. It must be frustrating to have to deal with all this stuff right when you hit puberty, high school and all these life changes that should be fun and exciting. He is exhausted, mad and frustrated most of the time. In the mean time he’s amazing me with all he does. </span></span></span></div>
<span id="docs-internal-guid-62f77316-f500-caf5-9f1b-c0505a3aac5b">
<span style="color: blue;"><br /></span></span><br />
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span id="docs-internal-guid-62f77316-f500-caf5-9f1b-c0505a3aac5b"><span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> While we were discussing all our possible options I asked if we could do something similar to what we have done when my daughter was in such a rough place. I learned something about her that I didn’t know before. Sometimes it’s good to not know everything, because knowing too much may have freaked me out. Maybe it was shared with us or not, maybe I just have blocked it out or simply forgotten about it, but apparently when she was doing so bad , she had systemic involvement. Systemic arthritis means that the vital organs are inflamed, which of course can be very serious. Since her IV treatments it has not ever reoccurred so we have passed that station, luckily. </span></span></span></div>
<span id="docs-internal-guid-62f77316-f500-caf5-9f1b-c0505a3aac5b">
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"><br /></span></span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> All this is wearing me out, but I am an adult and I don’t even have to physically live it. I love solving puzzles and mysteries, figuring out tricky scenarios, but I have to say I’m kind of over this whole arthritis thing. I can’t believe how my kids always keep their heads up. They must be so tired of explaining and accepting, I believe half the time they don’t even bother trying to explain. Still after all the 10 years we have lived with this as a family , the misconception and the misunderstanding bugs me immensely. Every time we have to fight for simple things. Most days are great and we are mostly approaching this positively, but some days I wished my kids’ struggles would be validated and acknowledged by someone other than their mom and dad! </span></span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"><b id="docs-internal-guid-62f77316-f501-cb62-24cb-4e47b064292c" style="font-weight: normal;"><span style="color: blue;"><br /></span></b></span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: blue;"> Lets make 2015 the year all of those suffering from whatever rare or unknown disease will be a little more understood, receive a little more empathy and a little more respect for the struggles they live through every day of their lives!</span></span></div>
</span></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-78163494664870050282014-11-26T20:24:00.001-08:002014-11-26T20:24:48.501-08:00Moving Forward<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> December is less than a week away. Quite some time has passed
since my last blog post. A lot has happened too, which is probably why it took
so long to update. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> My son has had a clinic visit in October, not a lot has
changed.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> His fingers look bad, I
try not to stare at them every time I see them, but sometimes I can’t help
myself. </span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> A couple of weeks ago we were discussing the institute of marriage and
how people usually exchange rings to show their commitment. My son was wondering how he was ever going to
be able to find a ring that would go over his knuckles without it looking like
a bracelet around his finger…the things you worry about.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> Still many drugs…slowly we are trying to wean him from
prednisone but we have a long way to go yet. Enbrel is his new weekly routine,
he seems to be used to it, but I’m not sure if I see results yet. We shall be patience
and see!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> He had the opportunity to play volleyball with the seniors
team of his high school this season. Being a rooky and being the only grade 10 boy, he did
not have that much play time, but he trained hard, played some games and had a
fantastic time with his team and his coach. The whole team showed fantastic
effort and great dedication, and completely unexpected ( for most of their
opponents) they team became zone’s champions and they got to represent their
school at provincial championships. I’m pretty proud of the entire team and
thankful he did get this opportunity. It did show him that; yes, his arthritis
is hindering him but will not stop him from doing what he loves. Now on to
basketball, try –outs are on their way. Here’s to hoping his knees and fingers
will be cooperating and he can enjoy a great season. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYWvFiTW8WbGsoft6g-i2uq6J2iPm8c2nI1zo53CsbW8zwow4T8Y4zBl-PZaMRchF8zBHaWluyQEA1P4shKcak5-IsQiYDsZNRNkVVhpOUHEa08yfHfhc-RKkrx1Wx-DbmvyaGswnyaVOT/s1600/078.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYWvFiTW8WbGsoft6g-i2uq6J2iPm8c2nI1zo53CsbW8zwow4T8Y4zBl-PZaMRchF8zBHaWluyQEA1P4shKcak5-IsQiYDsZNRNkVVhpOUHEa08yfHfhc-RKkrx1Wx-DbmvyaGswnyaVOT/s1600/078.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">number 9</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> Both my son and my daughter had an ophthalmology appointment
the beginning of November. Thankfully they both had no issues, and since my
daughter is no longer using plaquenil, and my son doesn’t need to be seen more
than once a year, we are good to go for the next couple of months!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> Today my daughter and I made a trip to the Children’s Hospital
again. Bittersweet, because it was her last official visit there, before her
transition to adult care. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-_YfZx6lRVvi6WYql9IHAJwvhm6OqJabRwUIjisy2XCkWF8blUd0JlKuLfuAsXUvtuuqXvts9BV19diKeuuhzQjduxpXfINhyS4pyaUy_UVYd6SA46huIfOTfIpkUekqQwE4RSF6LLjL5/s1600/298.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Courier New, Courier, monospace;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-_YfZx6lRVvi6WYql9IHAJwvhm6OqJabRwUIjisy2XCkWF8blUd0JlKuLfuAsXUvtuuqXvts9BV19diKeuuhzQjduxpXfINhyS4pyaUy_UVYd6SA46huIfOTfIpkUekqQwE4RSF6LLjL5/s1600/298.JPG" height="320" width="240" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Courier New, Courier, monospace;">Last time walking these halls as a patient for my daughter.</span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> She is doing fantastic, no inflammation to be found, her back
is doing much better, and another med is discontinued, good stuff! All she
takes now is one shot of humira every other week…what a way we have come since
she started her journey with Arthritis, 10 years ago….<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> She’s working so hard and making me so proud. She has been
conditionally accepted to the college of her choice, enrolled in the education
program. She has her school, her job, her social life, and what most people don’t
realize is that she has to work twice as hard as anyone else. She does it with
grace and most days with a smile on her face, no matter what obstacles she encounters! ( Like almost rolling her vehicle and now having to drive with mom again...) </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;"> My “little” girl is as tough as they come, with all of her 156
centimeters and her 41 kilograms. She picked out her graduation dress already,
it’s pretty stunning, but it will have to be altered! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%;">I’m very excited for her to start the next chapter of her life,
I’m sure she is going to embrace it with open arms and give it her all…..just
not sure if momma bear is ready for it yet!<o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-2082641290837739442014-08-29T21:16:00.002-07:002014-08-29T21:16:26.400-07:00Plan D<div class="MsoNormal">
Summer is over, time to get back to school.</div>
<div class="MsoNormal">
Looking forward to the routine, but am a little sad this
summer has gone by so fast. Also a bit disappointed we got so little
accomplished on the health front.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After communicating back and forth between researchers,
specialists and the pharmaceutical company, the trial my son was partaking in
was terminated. A mistake was made, not
one person was to blame, just a couple of circumstances combined, some fine
print that was overseen, some misinterpretation, some lack of supervision,
whatever it was: we had to stop. What it comes down to is that the trial has
not been performed according to the guidelines that were set and is therefore
invalid. We can not start over because he has already been exposed to the drug;
it’s in his system, so again, a “contaminated” baseline. Too bad, so sad, but
we have to move forward.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The hopes we had to get a good start and see some great
improvement is my son’s joints were crushed too. A lot of our time, our doc’s
time, a lot of people’s time just wasted, unfortunately. We made 7 trips to Calgary over the break and
we have not made any gains. In fact, we are back to the drawing board and have
to start from scratch.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On to plan D.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We decided we would give Enbrel a chance. It has never
worked for my daughter, therefore we initially skipped it, but now with Humira
not doing what we would have liked it to do, and the Certolizumab being discontinued, we thought we may as well give Enbrel a
chance, who knows! </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBBajz6Ei3SXMsXPLm9ZFWPBFdox4-Jcjdiky45IQx76e-T148H_asnzdLzPkxvP-cGjhPKew7mXoGLet02SdXK9O7cGXg6zT-LRzBP-Qma3tqUfmsaF6namRs5C1xTLuDsq3wQaJPY_3F/s1600/277.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBBajz6Ei3SXMsXPLm9ZFWPBFdox4-Jcjdiky45IQx76e-T148H_asnzdLzPkxvP-cGjhPKew7mXoGLet02SdXK9O7cGXg6zT-LRzBP-Qma3tqUfmsaF6namRs5C1xTLuDsq3wQaJPY_3F/s1600/277.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Hop on the bed and let's check out those joints."</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So….in the process of getting that going. Insurance has
approved it, the syringes are waiting in the fridge, and now we are waiting for
a nurse to come and give him training. A less painful injection than Humira, but the down side
is that he has to take it weekly. </div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
Next week school start. First day of school there are
volleyball try-outs. He is really looking forward to that. I am not, with his
hands looking the way they do….but I’m not going to deny him this. We shall see
how it all goes. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There is no need to look back; we do need to look forward. I
have to admit though, that I would have hoped this summer would have given us
some positive energy to start the new school year off on a good note.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
This too shall pass and we will tackle the beast somehow, we
will even do it with a smile on! We've</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
done it once, we can do it again!<br />
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com3tag:blogger.com,1999:blog-6922826870681448559.post-26012250389819003852014-08-06T21:15:00.000-07:002014-08-06T21:15:03.685-07:006 down...<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> August has
arrived, don’t even know what happened to July! Summer break they call this; I
am exhausted! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> The weather
is nice, hot and toasty, with the occasional down pour and thunder storm. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> Since the
beginning of July we have made 6 trips down to Calgary, with today being the
most recent one. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> My girl had
a checkup. She is getting really close to her transition to adult care. We
found out today her current doctor will be following her to the “Yard” ( young
adult rheumatology department) to help familiarize her with her new team of
medical professionals and to help the team get to know her and her history.
Again I am very impressed with the thought that is put in to all these facets.
Hopefully this will all make for a smooth transition. Plus we are excited we
don’t have to say good bye to our beloved doc quite yet! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> She was
found completely clean (that’s what we say when there is no swelling found
anywhere in her joints!) and because of this, yet another drug was scratched
off her list! No more Plaquenil for her, all she takes now, to control her arthritis
is Sulfasalasine and Humira. Nice deal, because since she was on plaquenil she
needed to have her eyes checked by the ophthalmologist twice a year and now she
will only have to go once a year! Still some stomach issues but we have a plan
for that too. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;">In the mean
time; I’m proud of my girl, she’s as strong as they come, in the cutest little
package! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSitX3We0HxKaI2TtlwqQYhmKDIMRZPF5nz2_LB6FU-eRmUj9_W6Cl2LAb4dV6gxuWH9B384SgoXEVU0TrCmawNB25tN9UsoMr2VXSmCYJNzNJl28HwSVYFfQucF7MSanxFPOsQ-hVfb6a/s1600/168.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSitX3We0HxKaI2TtlwqQYhmKDIMRZPF5nz2_LB6FU-eRmUj9_W6Cl2LAb4dV6gxuWH9B384SgoXEVU0TrCmawNB25tN9UsoMr2VXSmCYJNzNJl28HwSVYFfQucF7MSanxFPOsQ-hVfb6a/s1600/168.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the pile of paperwork is my daughter's file, and I'm afraid to say this isn't all of it yet....</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> For my son it’s
a different story, we are not where we want to be yet. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> Our first
appointment in July was to establish a baseline, from where we could start this
“new” drug. Full body examination, all affected joints were registered, checked
on range of motion, swelling and pain. Blood work was done, urine samples
taken. Questionnaires filled in by both my son and me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> Three days
after this we went to Calgary again, for a visit with the allergy specialist. He was tested for probably about 80 common
allergies. None of them triggered a reaction so that is good to know. The specialist
had a plausible theory for the reaction my son has had. </span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;">Since his immune system
was “in a bad mood” at the time, with the arthritis being so active, adding to
that a flu shot and on top of that his first doses of Humira ( and secretly I
am also thinking he may have had an insect bite on his head as well) his immune
system got out of control and reacted in the way it did, with the welts and the
swelling. </span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;">Basically all the triggers worked like gasoline on a fire and made for
a big reaction. So not really an
allergic reaction, just all the symptoms! Chances are he may never react like
this again, chances are he may, only time shall tell! Somewhat reassured.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> Another
three days later and we went back to the rheumatology clinic for day 1 of the
trial. Again: a complete physical exam, blood work, questionnaires and the
whole shebang. When we were “all clear” we went to the medical day unit where
he received his first injection of Certolizumab. We stuck around for a bit to
see if he had any signs of an unwanted reaction, but he seemed just fine so off
we went! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> We were off
for a whole week before we had to go again! ( appointment number 4!) Just a
check up this time, full exam, blood work and questionnaire, no shot this time!
Easy breezy!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> Appointment
5 was another week later. Full exam, blood work, questionnaires and this time
it was time for shot number 2. So off to medical day unit,to get his shot and we
were out of there. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> Appointment
6 was today. We were able to bring the girl child too so it was two for the
price of one today! Again a full exam was done. To be honest; so far I don’t
really see improvement, but we shall stay positive and allow it more time!
Blood work, urine sample, questionnaire, and off to medical day unit again.
Today he did his own injection: man what a trooper! He had done the injector
pens before, but never a syringe. No big deal for my guy; let’s just do it and
get it over with. Also one to be very proud off! We were send home with his next dose, we actually have a month off! Maybe...<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpD6JDp48pXrIBfRYPvjK6bIUiNCRjRQlaB6xRlyxvmbHdpJXW2MbvM_PjyRaKjccwyNjBH-fRFWM3g2S9-KvBF1eBPkUC1VzBFzM8f_GMj4ZbjXSG8EDQgBfUpxHPh2KvSQ7N-W5FJ9Df/s1600/170.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpD6JDp48pXrIBfRYPvjK6bIUiNCRjRQlaB6xRlyxvmbHdpJXW2MbvM_PjyRaKjccwyNjBH-fRFWM3g2S9-KvBF1eBPkUC1VzBFzM8f_GMj4ZbjXSG8EDQgBfUpxHPh2KvSQ7N-W5FJ9Df/s1600/170.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">impressive looking labels</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"> After our
long drive home the phone rang. The doc phoned with some disappointing
information. The representatives of the pharmaceutical company that give the
(very strict) guidelines for the proper execution of this study, have failed to
let us know we were to discontinue a certain drug before we could start this
study. No Sulfasalazine…. He was supposed to discontinue before the start of
the study. We have stopped using them as per now and we will have to wait and
see if they will allow us to start over, with today being the baseline….I’m not
sure what to say. I have to admit that I am rather disappointed to potentially
see all this effort from both our medical team and ourselves be in vain…. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;"><br /></span></div>
<br />
<div class="MsoNormal">
<span style="font-size: 16.0pt;">6
down…..the drain? </span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt;">We shall see, to be continued! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<span style="font-size: 16.0pt;"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-37257962210106635002014-07-01T12:49:00.000-07:002014-07-01T12:49:40.051-07:00"Summer Break"<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With the school year having come to an end, now is the time
for a well deserved summer break.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My daughter had a really good year at school and is now
ready to move on to grade 12; her final year of high school. Exciting and
scary, a year with a lot of lasts and firsts is laying ahead for her. She will
have her last visit with the pediatric rheumatologist, and the first one with
her adult specialist. She will start her last year of high school and her first
year of college and so many more milestones are in her future. Pretty proud
momma here, she’s accomplishing so much and seems to let arthritis get in her
way of doing whatever it is she chooses to do. We have just finished off a
study about how arthritis affects teenagers, she put quite a bit of time into
that. She also wrote an essay that is featured on this site, for the world to
read. </div>
<div class="MsoNormal">
<a href="http://www.arthritistoday.org/what-you-can-do/arthritis-stories/growing-up/merel-morskate.php">http://www.arthritistoday.org/what-you-can-do/arthritis-stories/growing-up/merel-morskate.php</a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were approached through this blog and I’ve written a
little entry as well:</div>
<div class="MsoNormal">
<a href="http://www.arthritistoday.org/what-you-can-do/arthritis-stories/growing-up/merel-and-koen-morskate.php">http://www.arthritistoday.org/what-you-can-do/arthritis-stories/growing-up/merel-and-koen-morskate.php</a> </div>
<div class="MsoNormal">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjflvk60tylA54LOFtByS_6KbhasX8Ke7laSUVWksw4dHDl7eBxggmWl0aERJsv-bwVdqtiKgo3d2jrgZNjtClKzUhCb7gJc9a3K0KY3GVJ2qModURtuLC2MALsknWIxlH_DJnpwv0grfPq/s1600/401.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjflvk60tylA54LOFtByS_6KbhasX8Ke7laSUVWksw4dHDl7eBxggmWl0aERJsv-bwVdqtiKgo3d2jrgZNjtClKzUhCb7gJc9a3K0KY3GVJ2qModURtuLC2MALsknWIxlH_DJnpwv0grfPq/s1600/401.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My bunch!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As for my son… He has had a great year in many ways as well.
He has ended his 9 years at our little country school and is now ready to move
on to the big high school in town. A new
start with lots of great opportunities to explore for him. Arthritis wise it
hasn’t been a super year. Joint injections, starting with humira, scary
allergic reaction…and no improvement to show for it.</div>
<div class="MsoNormal">
Hence the start of yet
another new therapy. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Certolizumab.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Just recently approved
for pediatric use. He is enrolled in a study and as of tomorrow we will have to
make many road trips to the Calgary Children’s Hospital. So truly; the “summer
break” is really just a break from school. So far we have our first 3
appointments booked: July 2<sup>nd</sup>, 7<sup>th</sup>, and 10<sup>th</sup>.
Many will follow; we shall see how to keep up with them. Here’s to hoping this drug will work for my
son. I’m hoping he will play sports for his high school, keeping my fingers
crossed the frequency of his medical appointments and the arthritis itself won’t
be an obstacle that prevents him from doing this. </div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Tomorrow is the first step on our new road, our alternate
route, but if it leads us where we need to go, any route will do! Besides, are
the back roads not the most beautiful and surprising ones we can travel?! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com4tag:blogger.com,1999:blog-6922826870681448559.post-24755147486746471562014-05-12T22:10:00.003-07:002014-05-12T22:10:56.807-07:00Oh May, Oh My.<div class="MsoNormal">
Off to Calgary it was again, for a “regular” check up at the
rheumatology clinic in the Children’s Hospital.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My daughter is still doing great. She is having some stomach
issues and her back is bugging her at times, but her overall health is good.
Her MRI results were as good as to be expected. Sad but true: her next clinic
visit may be the last one at the Children’s Hospital. Very mixed feelings about
that…. Grateful for the care she has received over the years and at the same
time anxious about the upcoming changes for her. The transition to adult care
is a graduate one, with the pediatric clinic and the young adult clinic working
closely together to make this transition as smooth and painless as possible.
The unfortunate part is that this clinic also is in Calgary so traveling will
be in my daughter’s future for the next couple of years at least.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-SbwDSTJqdqOYUUg8MBGahjWNIKdqeXegu0yGdxA_2MBSc8lq0hCCg11ENXPbPnywf18CEgUojzgepVQw4FZH-nOPhuDGb2jlZRI8Qm5MMjVki7nAR6J43apv3BBx3cngcxS3K3XSZ-N3/s1600/10171786_10152365921703770_5947323114683445512_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-SbwDSTJqdqOYUUg8MBGahjWNIKdqeXegu0yGdxA_2MBSc8lq0hCCg11ENXPbPnywf18CEgUojzgepVQw4FZH-nOPhuDGb2jlZRI8Qm5MMjVki7nAR6J43apv3BBx3cngcxS3K3XSZ-N3/s1600/10171786_10152365921703770_5947323114683445512_n.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">entrance of the Children's Hospital,<br /> a hallway we have walked many many times</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Travel….unfortunately that will be a key component in my son’s
near future as well. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As expected we found
that Humira was not doing enough for him. With his finger joints still
extremely swollen, decided was that the time for yet another drug change has
arrived. A few options were discussed.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The road we are going to travel is an unknown one. He is to
start a drug that just recently has been approved for pediatric use. It will
have to go through a clinical study.
That’s where the traveling comes in…The first few weeks we will have to
travel to Calgary once a week, if all goes well, we can then go to bi- weekly
visits, followed by monthly visits and bi-monthly. The study will take a year,
if all goes well. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For now; his system needs to be flushed, so no more Humira
as of the end of April. The new drug can be started in the first part of July.
Hopefully we can get the bulk of the weekly visits done over the summer break.
Both his schooling and my work would really benefit from not missing too many
days… </div>
<div class="MsoNormal">
Because
his joints are already so swollen, I’m scared that two months of no biologics
can wreak havoc on his hands. If that’s the case, we will have to start with
plan B: try Enbrel. Since it has been unsuccessful with my daughter, I’m not
too hopeful it will do much for my son, especially since Humira isn’t doing the
trick either.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The name of the new drug is Certolizumab. I have yet to find
someone who has experience with this one. If by chance anyone who reads my blog
has some input about this biologic, feel free to share your thoughts with
me!</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
In the mean time my son will have to continue his
prednisone, MTX, Sulfasalzine and Naproxen, let’s hope that does the trick for
now. If anything I was really hoping the pred and MTX could be discontinued. Those two I really hate with a passion, they
impact my boy’s personality greatly in a negative way. </div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
For the rest; my son just wrapped up a pretty successful badminton season ( even though he walks of the court like an old man after a game) and is almost ready to move to the big high
school in town, a couple of weeks left and then he will have his grade 9 farewell
and is moving on.</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
My daughter is doing great,
almost done grade 11 and will graduate next year. Spring is finally starting to
show itself and the days are getting longer and warmer. Hopefully summer will
be upon us soon!Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-88866665102859289172014-04-25T20:31:00.003-07:002014-04-25T20:31:57.593-07:00...Spring..? Are you there? It's been a while....May is fast approaching. March has come and gone and now April is nearing its end. Let's hope May brings us spring...it sure has been a looong winter this year!<br />
<br />
My son has not seen much improvement after his joint injections. My guess is that a med change is on the brink of happening....It would be a monthly infusion. He also has had an MRI done of his hands and we will hear the results of that at our next clinic visit, which is coming up shortly. I'm really hoping we can change his drugs regimen soon because he is not feeling well at all. He has to stay home sick almost once a week. That's a lot of school he is missing. He's been playing badminton lately and doing pretty good. Just sad to see him hobbling around like an old man after a practice or a tournament. Hoping for some positive changes soon because this is getting really old really fast!<br />
<br />
My daughter is doing pretty good. She's been having some stomach issues but other than that, she's in great shape! Her bi-yearly ophthalmology appointment just lays behind us and her eyes are clear. She has also had an MRI done. For the first time in ten years I was unable to accompany her to a medical appointment and that was not fun at all. I'm very thankful that some great people stepped up to help out. I hope I will never have to let either one of my kids go to any medical appointment "on their own".<br />
<br />
Our next clinic visit is coming up in the beginning of May, double date with both the kids AND their momma!<br />
<br />
I was approached by a local journalist to share our story to spread some awareness about JA. My daughter and I were interviewed by Jeffrey Heyden-Kaye, from the Ponoka News. I'm proud of my girl for starting to advocate for JA. I'm thankful for people like Jeffrey Heyden-Kaye to help raise awareness. It seems to me the awareness is slowly growing so that's super!<br />
<br />
I will post the content of the article on my blog, courtesy of the Ponoka News. Some beautiful pictures were also shot by Jeffrey Heyden-Kaye! We have also been approached by another person to help raise awareness, probably more about that in one of my future blog posts! For now I'll leave you with this fine article!<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgovzzFs4_3bw0bkmibqI5AklcF3PrRjIATE3_KruBynv0RvYcyNpv-ZPyE4Yv2dr0KC4FxOIL5aElQh9bkl-Y0YhkcYbCxI3o535QMKte0DVRquiBOPg1VDecUPvM-nL8ApRTCTNe4wGl8/s1600/unnamed+%25284%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgovzzFs4_3bw0bkmibqI5AklcF3PrRjIATE3_KruBynv0RvYcyNpv-ZPyE4Yv2dr0KC4FxOIL5aElQh9bkl-Y0YhkcYbCxI3o535QMKte0DVRquiBOPg1VDecUPvM-nL8ApRTCTNe4wGl8/s1600/unnamed+%25284%2529.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my girl and I</td></tr>
</tbody></table>
<br />
<h1 style="background-color: white; border: 0px; clear: both; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 1.25em; letter-spacing: -0.02em; line-height: 1.13em; margin: 7px 0px 12px; padding: 0px; word-spacing: -0.02em;">
Family stays positive while dealing with juvenile arthritis</h1>
<div>
<span style="background-color: white; color: #666666; font-family: Verdana, Tahoma, Arial, sans-serif; font-size: 11px; letter-spacing: 0.1599999964237213px; line-height: 16.33919906616211px; word-spacing: 0.1599999964237213px;">By </span><a href="http://www.ponokanews.com/staff_profiles/158877345.html" style="background-color: white; color: #006699; font-family: Verdana, Tahoma, Arial, sans-serif; font-size: 11px; font-weight: bold; letter-spacing: 0.1599999964237213px; line-height: 16.33919906616211px; word-spacing: 0.1599999964237213px;">Jeffrey Heyden-Kaye - Ponoka News</a></div>
<div>
<br /></div>
<div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Seeing a child bent over and unsteady on their feet is not an easy sight for a parent but an estimated 24,000 Canadian children and teens live with the disease known as juvenile arthritis (JA).</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
In an effort to raise awareness, the Arthritis Society of Canada has designated March as Childhood Arthritis month. There is no cure for the autoimmune disorder and those afflicted with it have to change their whole lives around.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
For the last 10 years, one Ponoka family has dealt with the issue and they took some time with Ponoka News to explain how they managed. Laeta Morskate said most people attribute the disease to old age arthritis, but when children have JA it is something different.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“In juvenile arthritis your over-active immune system is attacking healthy cells in the body and they can cause inflammation,” said Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Her daughter Merel, 17, says her disease gets mentioned at least once a day.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“Everybody always asks me, ‘Really? I thought only old people got it.’ But they don’t,” said Merel.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
JA is an aggressive disorder that needs to be treated in an aggressive manner, explained her mother. The disease is so invasive and treatments are strong that the family has a cabinet stockpiled with pills and syringes.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
People suffering with JA take some of the same drugs used for cancer treatment. Doctors can administer steroids, anti-inflammatory drugs, biological drugs and disease modifying drugs.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
It can last a person’s entire life but may go into remission. Mrs. Morskate has been told if it goes into remission by time a youth reaches 16 years, then it most-likely stays that way. In Merel’s case, she is in medical remission but must continue her drug regimen.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“She is now basically complaint free,” said Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
When Merel was first diagnosed she had to take steroids along with up to 20 pills a day. After almost nine years a working drug cocktail was found and Merel now takes three pills a day and gets a shot every other week. She administers a needle herself into her leg.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
One of the reasons she took so many drugs is so doctors could find the right cocktail for Merel’s immune system.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
To ensure her system is healthy, Merel goes for checkups every six months and blood tests every six to eight weeks. Mrs. Morskate says the drugs try to trick the immune system, but they also suppress it, if Merel gets sick, her immune system cannot manage a basic cold.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“We have had a full year where we had to go every four weeks,” said Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Merel gets taken to the Alberta Children’s Hospital in Calgary and she has found the experience to be positive. “I don’t want to go anywhere else,” stated Merel.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<strong style="line-height: 1.48em;">Fighting JA while going to high school</strong></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Grade 9 proved a challenging year for Merel, who spent a lot of time at the hospital. She missed out on school days and struggled with her schoolwork, especially math.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Swollen joints, back pain and constant fatigue make learning a challenge, Merel was not only physically tired but mentally drained as well. Because of the disease, Merel has one leg that is shorter than the other.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“You can’t even learn, you’re just so focused on that,” she added.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
An even bigger challenge for Merel was her mental discipline and focus during tough times. While this proved difficult, it made her stronger.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“I feel like I can understand people a ton better than the average 17-year-old, I’d say. Just because I’ve been through so much,” explained Merel.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
She feels there is a mutual understanding with other people going through difficult situations in their life as well.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
At some point in their lives, Mrs. Morskate said they had to accept the reality of JA but she commends her daughter for having strong mental capacity to deal with these issues while leading a relatively normal teenage life.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“She has a job. She has a boyfriend. She manages her own medication now. She tries to lead a bit of a social life,” explained Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<strong style="line-height: 1.48em;">Passing on her experience</strong></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Merel’s brother Koen, 15, was diagnosed with JA in May. He is in the first phases of finding a drug cocktail that will work on him.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Koen takes eight to 10 pills per day and takes steroid shots, chemotherapy drugs and non-steroid anti-inflammatory drugs. It’s a big list that should get smaller as doctors narrow down the right group of drugs for his immune system.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“He’s doing alright. He’s exactly the way I was,” explained Merel.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
She understands the everyday challenges Koen faces as a teenager. Now he must deal with his physical health as well but Merel is confident in his abilities.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“He’ll be fine with age, and once he gets more knowledge on it,” said Merel.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“It sounds weird but he needs a bit of time to grieve over what is not to be for him,” added Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<strong style="line-height: 1.48em;">Raising awareness of JA</strong></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Both Merel and Koen have had fluids removed from swollen joints and steroids injected into their system.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“There’s just a lot of misconceptions. People do not know,” said Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“Arthritis is not sexy at all,” she added.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
The Juvenile Arthritis Society recently started to focus on how to help a young person cope with the disease. Mrs. Morskate says JA is constantly in the back of Merel’s mind and support groups are starting to sprout up around the country.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“When I was growing up with this, I didn’t know anybody else that had it,” said Merrel.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Mrs. Morskate suggests parents dealing with JA should find a healthy support group. She advocates a positive attitude in dealing with the issue. Being negative will not change the situation, she explained. “If you have to deal with a crappy situation, you may as well make the best of it."</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“Merel has learned things and lived things and met people that she would never, ever have the chance of meeting if it weren’t for her disease,” she added.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Trusting their doctor has been integral in getting better. Merel suggests anyone dealing with JA should not leave anything out when talking to their doctors.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Mrs. Morskate has heard of home remedies and herbal fixes but has not seen the merit in those suggestions. She politely smiles and says thanks when people offer the advice but suggests trusting their doctor has proved the best for them.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<strong style="line-height: 1.48em;">Merel was not eligible for insurance</strong></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
At the time of her diagnosis, she had four joints diagnosed with JA and insurance covers a determination of more than four. Shots given to Merel, and now Koen are called biologicals, or tumor necrosis factor blockers, which trick the immune system.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“The shots they take are $3,000 a month,” said Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Merel’s doctor ensured she received help under a compassionate program where a pharmaceutical company must spend a portion of their budget on patients not eligible or who do not have the funding.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Koen’s drugs are covered by insurance because his initial diagnosis was different</div>
<br />
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<strong style="line-height: 1.48em;">Using Blogger to deal with the issue</strong></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
The Morskates moved from the Netherlands in 2003 and one year later Merel was diagnosed with JA. Keeping the family overseas updated on their progress became cumbersome. Mrs. Morskate took to Blogger about four years ago to write about their challenges and as a means of stress release.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
“To keep my own brain organized…And to try and raise a bit of awareness,” said Mrs. Morskate.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
Merel and Koen have grown to accept their mother’s writing and she always respects their wishes when taking pictures. For Merel the challenge was wanting to keep her privacy, while at the same time raising awareness and keeping her family overseas updated.</div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwnmiuMk_E3B_1puxeFD8T2bBXLD-cFfj5jayS-Ttvm9ltxwnzATvxWe8YZdaaIhQIfOXbqjWUCmt1EifJnKRR7UBVq2IOBSPY1MpeUb6vrtnNeJRT-rb-pRlL9JG3JQACjnfBPHrL30zV/s1600/unnamed+%25281%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwnmiuMk_E3B_1puxeFD8T2bBXLD-cFfj5jayS-Ttvm9ltxwnzATvxWe8YZdaaIhQIfOXbqjWUCmt1EifJnKRR7UBVq2IOBSPY1MpeUb6vrtnNeJRT-rb-pRlL9JG3JQACjnfBPHrL30zV/s1600/unnamed+%25281%2529.jpg" height="272" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">her eyes....</td></tr>
</tbody></table>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
<div style="background-color: white; color: #333333; font-family: Palatino, 'Palatino Linotype', Georgia, Times; font-size: 0.88em; letter-spacing: 0.1599999964237213px; line-height: 1.48em; word-spacing: 0.1599999964237213px;">
<br /></div>
</div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-44507451596438251942014-02-23T19:51:00.001-08:002014-02-23T19:51:42.827-08:00Venture in to February<div class="MsoNormal">
Off we went to Calgary again. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Joint injections were on the program this time around. A good thing because my son was really bothered
by the way his finger joints were feeling. His feet and ankles are bugging him
too. Pretty sad to see him walking like an old man after a basketball game.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
With some snow in the forecast we left early so we could
take it easy in case we had to. Arriving half an hour early with pretty good
driving conditions made for a decent start to our long day. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Since there were quite a few joints they wanted to inject,
it was decided to do it under general anesthetic. That meant no food and drinks
for my teenage boy…don’t know if you've ever dealt with a hungry teenager; let
me tell you, it’s not a walk in the park! </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk7-LJhwto_cnC-PUvRr2fdlmBeNu7W0ssGSUf6Rjtb1IL9QB2jhQTg3DQwoPr0xa7IFX24nTPXjO4Yd3AYYqUpE_6jpJKvPNhfkWKfpe7G4hAkQY2KCYyMsQCN79qbPClbW6622ML7c5B/s1600/154.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk7-LJhwto_cnC-PUvRr2fdlmBeNu7W0ssGSUf6Rjtb1IL9QB2jhQTg3DQwoPr0xa7IFX24nTPXjO4Yd3AYYqUpE_6jpJKvPNhfkWKfpe7G4hAkQY2KCYyMsQCN79qbPClbW6622ML7c5B/s1600/154.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">hungry little big guy</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Drugs were ordered and picked up from the pharmacy. My boy
changed into his fancy hospital pajamas and the waiting began. About two hours
with nothing to do and nothing to eat! </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfW9LWTndoq72vGAB5HAZl4Scrchsd8xXJ74axHyP5KaA9ae68rqPrIPwwmfJEFHAp_nPTx0tud2MOCi2sIT3jDUQMjglToTAnsH-HwwjUKIbQ2z-C4AEDd45CCepvx_Z0adPtlp627vm4/s1600/153.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfW9LWTndoq72vGAB5HAZl4Scrchsd8xXJ74axHyP5KaA9ae68rqPrIPwwmfJEFHAp_nPTx0tud2MOCi2sIT3jDUQMjglToTAnsH-HwwjUKIbQ2z-C4AEDd45CCepvx_Z0adPtlp627vm4/s1600/153.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the bringer of relief?</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He was wheeled to the “holding area”. The doc and the anesthesiologist
came and marked off his joints and talked about the procedure. He was asked if
he’d prefer an injection or gas to “put him under.” He chose gas. And off he
walked, and my heart skipped a couple of beats.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUkChNDXeawkLViM0bt94PgLLN-MXPG_WcbBH8y1oVqvzNv730HxBImbfbve3sTRZyPJ3upiqIKJqFJZPRZuIbKCBUXJ7Sy2rswK9ybSWdknWuu-5eWV2a51fG5BQ0u6AUeFogANCbfHXF/s1600/157.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUkChNDXeawkLViM0bt94PgLLN-MXPG_WcbBH8y1oVqvzNv730HxBImbfbve3sTRZyPJ3upiqIKJqFJZPRZuIbKCBUXJ7Sy2rswK9ybSWdknWuu-5eWV2a51fG5BQ0u6AUeFogANCbfHXF/s1600/157.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">x marks the spot</td></tr>
</tbody></table>
<div class="MsoNormal">
I went to the waiting room and watched some Olympic speed skating,
even caught a heat were the Dutch females placed for the finals in the team pursuit
so that was kind of neat. Waiting wasn't fun though, not liking the fact I couldn't
be there with my boy. </div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
The wait was over, procedure was done and he was rolled back
on to the unit to recover. A chalk white face and pink washed hands and knee
were lying in a too small bed, with his feet sticking out. Poor groggy
guy. His knee, both his wrists and 8
finger joints were treated. His already big joints now look gigantic because of
the injected medication.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjudVFYm466VG08yFhStj3iU8XDS8uKmjDayn_E4Avr_L_E-kXdiB07wZr_qYEe-FUqTXdWZxSnlzcB91zGiXSEzjOdjli8wV4-GkJXdwa2xqwdtkDZKD_2ALTPX_rtDDkZUcJZ2qk5cQft/s1600/160.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjudVFYm466VG08yFhStj3iU8XDS8uKmjDayn_E4Avr_L_E-kXdiB07wZr_qYEe-FUqTXdWZxSnlzcB91zGiXSEzjOdjli8wV4-GkJXdwa2xqwdtkDZKD_2ALTPX_rtDDkZUcJZ2qk5cQft/s1600/160.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pretty in pink</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizeDQ13R52TqWsDP-Xy0IC0IrxFq0gBGdabAEkTBcZfImIetRATO403mD4fJR9NuL3IBDiCwCEidFTTBSlRNYzsOGtZH7PRM5cW5s8_2ssHvURi6GhRcT_4SM_aACR9iWLNC3ZpzfdLgHv/s1600/163.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizeDQ13R52TqWsDP-Xy0IC0IrxFq0gBGdabAEkTBcZfImIetRATO403mD4fJR9NuL3IBDiCwCEidFTTBSlRNYzsOGtZH7PRM5cW5s8_2ssHvURi6GhRcT_4SM_aACR9iWLNC3ZpzfdLgHv/s1600/163.JPG" height="320" width="240" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A long journey home again and finally, at 7 pm my hungry
person finally got to eat!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Whether or not it was successful, time will tell. For now we’ll
just wait and see. If it works: great. We can just keep doing what we are doing
now. If it is not successful: the next drug will be introduced. No more humira,
the next one will be a monthly IV. We shall see what the future holds. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Next on the agenda: MRI of both hands for the girl child,
MRI of both hands of the boy child, clinic visit with both the girl and the
boy, ophthalmology appointment with the girl child, appointment with an
allergist with the boy child, AND the dentist for both….hope to fit all of this in
somewhere! </div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-72383940282167636582014-01-20T20:40:00.002-08:002014-01-20T20:40:26.635-08:00Rough Start<div class="MsoNormal">
2014…I’m hoping all of you will have a fantastic year, a
better, more positive, and more healthy year than 2013 was! Being a little tired of all the medical trials we endured during the past year,we were hopeful to
be off to a good start. It turned out different though.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All is better now but my husband started the year off with a
nasty pneumonia, was admitted to the hospital for five days and stayed home for
9 more after that. It seems he is on the mend now, but it was a stubborn bug
that hit hard. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not just health wise, Mother Nature is also not helping out! We have had more snow
in just December than we usually have in a whole winter. We've had extreme cold
temperatures and crazy winds, where semi trucks were blown off the highways.
The crazy amount of snow has caused many barns to collapse, what is a big
catastrophe for our local farming community. We've had above zero temperatures
where the snow starts to melt and freezes up overnight, to create ice rinks in our yards and on our roads.
Wicked weather. But: we do see a bit more sunlight already and we are nearing
the end of January, so there is light at the end of the winter tunnel! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDqvtN83kbNmPFni2hYUPuT_nSpuA4XrIJgJLrZGp7kiDjLmKYvui4I4IoitIkzvJdYpw6PaHismHwFMJvJiGeRIzeCAeQODgM-mT-he4ONjmp1vJ72v-bxkh0ZAxoaK4g0AEcnaV-WL3r/s1600/135.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDqvtN83kbNmPFni2hYUPuT_nSpuA4XrIJgJLrZGp7kiDjLmKYvui4I4IoitIkzvJdYpw6PaHismHwFMJvJiGeRIzeCAeQODgM-mT-he4ONjmp1vJ72v-bxkh0ZAxoaK4g0AEcnaV-WL3r/s1600/135.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">it sure is pretty though!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today was another day of driving to Calgary, to have my girl
and my boy checked out. Luckily this was one of the very beautiful days so the
driving conditions were great. It almost felt like spring was in the air!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My daughter’s joints were clean, Hooray! She has been having
back pain lately and the doc did some further exploration as to what may cause
that. Since she has a leg length difference from about a centimeter, chances
are her hips are slightly tilted or she may compensate it with the posture of
her spine, this can cause back problems .An insole to correct the difference is
prescribed, we will go and hunt for that at some point in time! When the doc was examining her back, she also
found there was a curve in her spine: scoliosis. It is a very mild curve and
usually scoliosis does not cause back pain, but it definitely is something we
need to keep an eye on. Also a question my daughter had was if she had
developed an intolerance to dairy, the fatty dairy in particular; creams, ice
cream, whipped cream etc. because she can have severe cramps after she has
eaten it. The doc is investigating this further and is also wondering if she
maybe has developed celiac. Blood work ordered and done and also x-rays ordered
and done to finish off her appointment! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My Son….he’s not quite there yet. He’s been on Humira now
for 4 months, plus on prednisone, MTX, Naprosen, sulfasalasine, folic acid ;
the works. There is no improvement in his finger joints and that is a bit
worrisome. The treatment has been aggressive and we should have at least seen
some improvement. So now it’s time to bring in the big guns. The doc had a
couple of scenarios and this is what we chose to do first: do joint injections*
in all his affected joints (more than 10), give it two months and we will
evaluate after these two months if we see enough improvements. If not, we need
to move on to another biologic, she mentioned two, and both of them would be
monthly infusions. Since he has so many
joints that need to be injected they will put him under general anesthetics, so
he will be out completely! So…blood work
ordered and done and x-rays ordered and done to finish off his appointment!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After that mommy, boy child and girl child were all hungry
and in need of some shopping therapy! Red basketball shoes, a Pink hoody, and a
grey winter coat were purchased; I’ll leave it up to you to figure out who got
what!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0lmoUZeMcKQvmOi5oCSr5ivShRKERRR3MbXwrl6WbC0BLWRiLmidDhlE_sgUsN-Of5UfhVNIOjBOFIIGESc5gLeHv1XkinPEzNrIT5UohGJvX57iLcvAlZWIO-KUiGDLe-vxrnMziXQ3B/s1600/331.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0lmoUZeMcKQvmOi5oCSr5ivShRKERRR3MbXwrl6WbC0BLWRiLmidDhlE_sgUsN-Of5UfhVNIOjBOFIIGESc5gLeHv1XkinPEzNrIT5UohGJvX57iLcvAlZWIO-KUiGDLe-vxrnMziXQ3B/s1600/331.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">red, pink , and grey</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*Joint injections are injections done in the inflamed joint,
where fluid is retracted and medication is injected.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-65526284537557085362013-11-27T19:41:00.001-08:002013-11-27T19:41:31.474-08:00 A Case of Unofficially Diagnosed Weirdness<div class="MsoNormal">
Here’s an update for my family and friends that live far
away and close by. Plus for all those wonderfully supportive people that live in cyber space. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
First off, I cannot express in words how impressed I am,
again, with the care we receive. Every time we are in need of care, help or
answers, we get exactly that. I am aware of all the horror stories that are out
there about negligence, lack of care, and how unaffordable it can be. My family
has yet to have a negative experience. My kids are fortunate to have such a
caring team behind team, rooting for them and trying to figure them out.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After the scary allergic reaction my son had, we all felt
strongly it could have been caused by the medication he recently started. In
order to make sure, we would have to try it again. Since his reaction was
delayed (5 days after his injection) it was important for him to be monitored
closely in a controlled environment. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so we did, off to Calgary we went again. The plan was to
check in, bring in an IV, in case a severe reaction occurred, and then my son
was to administer his shot of humira. It took a couple of tries , but the IV
was in at the third attempt. Hart was monitored and his oxygen levels checked.
An epi pen was ready to be used and a big bag full with scary meds was ready,
just in case it was needed. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixAjA3WdMbE2u-akv_L-lKbrF30e0YwIYRVjtnkBTwj7THEZmMgNk8Bf471PikzQ2xg3T97BvPfF5-rDOc7oH5gEqEekHvT1N9LFUJ8JYqizTPH1Dy3KY0iLCFr0bo8ABrcUegIKbZWIa1/s1600/059.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixAjA3WdMbE2u-akv_L-lKbrF30e0YwIYRVjtnkBTwj7THEZmMgNk8Bf471PikzQ2xg3T97BvPfF5-rDOc7oH5gEqEekHvT1N9LFUJ8JYqizTPH1Dy3KY0iLCFr0bo8ABrcUegIKbZWIa1/s320/059.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">IV is in!</td></tr>
</tbody></table>
<div class="MsoNormal">
It was explained to me that once a severe allergic reaction
has occurred, the next time the reaction may be faster or more intense. Good to
know but not too reassuring! On top of that, my kids have a compromised immune
system. Their system is already overactive and the course a reaction can take
is not predictable and differs from what is the norm. If you add the meds my son is on to the mix,
it makes it nearly impossible to predict what course this will take or what
even triggered it. (I'm somewhat convinced his reaction was delayed and was so slow in its' progression because his prednisone use had taken off the edge of the full blown reaction, but that's just my laymen opinion.) </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Since my girl is responding so wonderful to Humira, the doc
wanted to make sure whether or not it was the Humira that caused this, before
we decided to stop using it. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So…there we go, shot is in and the waiting begins. Every 4
hours vitals checked, checked for any sign of a reaction, fever, blood
pressure, the works.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX0ULTt4vUTCUBiUi3aKBGwR6nr7F4_omFyAs7GSgV1rQrJ_JN87BOP64xe62o0Jqd9-dNUnTMSVeorVxxsASOZ51WCOLtCCCtlHB4kxbJrNfcM7tdzJQiwXZQzRDoYrv4fI0LliecHDYl/s1600/063.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX0ULTt4vUTCUBiUi3aKBGwR6nr7F4_omFyAs7GSgV1rQrJ_JN87BOP64xe62o0Jqd9-dNUnTMSVeorVxxsASOZ51WCOLtCCCtlHB4kxbJrNfcM7tdzJQiwXZQzRDoYrv4fI0LliecHDYl/s320/063.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br />bells and whistles </td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am happy to say we did not see a reaction. I am also sad
to say we did not see a reaction. I’m glad we can give Humira another try (the
way it looks now: we have had 48 hours without a reaction, but the last time it
was 5 days before something showed up, so we are not totally out of the woods yet). </div>
<div class="MsoNormal">
We received training
for “how to use an epi pen” and were discharched.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But now what?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We will have to consult an allergist to see if we can find
out more. The doc forewarned me that we may never find out. That doesn’t sit
well with me because I would like to know so we can help prevent future
reactions.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ZIKnZI_nzp8oc_nOuE7Srn-XfU_-ZToM_1ifjODvJsa7nNIiTOQlb7VMVvJ3noeg3XOnnnbChBFv2g4svp2_nEymkmJsal85bqofzZS7KMQzc9-X7Wl9uriq1mwLvi5lbMq2TC4K1SsS/s1600/079.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ZIKnZI_nzp8oc_nOuE7Srn-XfU_-ZToM_1ifjODvJsa7nNIiTOQlb7VMVvJ3noeg3XOnnnbChBFv2g4svp2_nEymkmJsal85bqofzZS7KMQzc9-X7Wl9uriq1mwLvi5lbMq2TC4K1SsS/s320/079.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There is something beautiful to see everywhere, just look for it!<br />This is the view from our hospital room.</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For now, my son has to go everywhere with his epi pen. That
will take some time to get used to, but no more risks like this for him. It
seems to be an unofficially diagnosed case of Weirdness yet again. </div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
To be continued</div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-84965196682876913512013-11-16T22:36:00.000-08:002013-11-16T22:36:14.036-08:00Never a Dull Moment<div class="MsoNormal">
Does it ever stop…?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sometimes I wish for a boring week, just an uneventful week
where nothing happens. Where you look for things to do because all the chores
are done and everything is taken care of.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thursday my boy came up from his room and said he had a bump
on his forehead. Indeed he did. I send him to take a shower and go to bed, we
would keep an eye on it and see how it would go the next day. </div>
<div class="MsoNormal">
The next day he woke up with red spots, hives all over his
body , swollen ears and a swollen forehead. Okay, let’s go see the doctor. On
our way to my vehicle I found my car doors locked with the keys inside. Spare
keys were in the car as well and the other set in my husband’s. So I phoned my husband and he came to the
rescue. When I started my car, a light on my dashboard told me one of my tires
was low…We drove to town very slowly. It had started snowing in the mean time
as well. </div>
<div class="MsoNormal">
Dropped of my girl at school and went to the ER with my son.
He was seen fairly soon. Yes indeed; an allergic reaction. Somewhat relieved
(because the rash turned out not to be measles what I was scared of at first)
we were send off with some anti histamine. My son wanted to go back to school
so I dropped off my car at the tire specialist and picked up my husband’s
vehicle. Drove my son to school and off to work I went as well.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZC5KL0ijjSSSqIsMOWb0iI3vqO_hHVvuqlFUf6dfbCPJ-BFqAowZbRUFA3HygHCFaxfi3KHWlNeq8uCcWmap4ODogmJ9McAzHsh07EhDSEf88d6kz6d5iIc9KvzRehwQO-zBgc_4mUntK/s1600/232.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZC5KL0ijjSSSqIsMOWb0iI3vqO_hHVvuqlFUf6dfbCPJ-BFqAowZbRUFA3HygHCFaxfi3KHWlNeq8uCcWmap4ODogmJ9McAzHsh07EhDSEf88d6kz6d5iIc9KvzRehwQO-zBgc_4mUntK/s320/232.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">some of the hives that covered his entire body</td></tr>
</tbody></table>
<div class="MsoNormal">
Coming home I didn’t really see an improvement, but hey, you
got to give the medicine some time to kick in. My boy ate a bit, had a shower
and went to bed at 7…that is not like him. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When he woke up today his hands were swollen , his eyes were
swollen, his lip was big, his hives were more red and they had spread as well….seemed
to me the antihistamine was not working. So back to the doctor we went. Luckily
it was Saturday…unfortunately it had snowed about a foot of snow over night. My
husband plowed the yard first end then off to the ER it was again. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Nurses were pretty “impressed” because the reaction was
pretty severe. After discussing his medical history and questioning if he had
any allergies (well duh…yes he does, just
not sure what!) he was given a room. A lady came to take some blood. She didn't
want to use alcohol swabs to clean his arm because she thought the hives looked
too painful. So she cleaned it with soap. Also no band aide because it would be
painful to take off. Finally the doc came and saw it was not all that good. A
shot with something strong (forgot the name!) and a humongous dose of
prednisone was given. We were then send home with more prednisone and an epi pen.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZX6L3OAVE3hVpmS5sJOmA012xDdsLdB3ZuIJBih_BN2iCS-9s8zEx45-mqKA6dtzhQ3P7BdV_tJ_my0iS1q873g5Xam9wleFClhxHnVEOk4hjRnY6lXj1fktgFISC6sBnLmIsDa5N9uvf/s1600/241.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZX6L3OAVE3hVpmS5sJOmA012xDdsLdB3ZuIJBih_BN2iCS-9s8zEx45-mqKA6dtzhQ3P7BdV_tJ_my0iS1q873g5Xam9wleFClhxHnVEOk4hjRnY6lXj1fktgFISC6sBnLmIsDa5N9uvf/s320/241.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">crazy swelling in his hands. On the plus side: you can't see his swollen joints!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Scary stuff….luckily we saw improvement of his hives within
a couple of hours. The redness went and he felt a lot better too. Now we wait
for the swelling to go down. Phew…another episode of weirdness and more grey
hair survived. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now we have to find out what caused this reaction…I don’t
really want to go through this again and I’m pretty sure my son was not a big
fan either. My thought about what may have caused it…? Last week on Friday he
had a flu shot and then on Saturday he had his Humira injection…a delayed
allergic reaction perhaps? I don’t know but I would sure like to find out. I
was told it is going to be tricky to find out what and how because of all the
medication he is on. We shall wait patiently.</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsoAygNaAky9SPenHp7Pl4y7E-CVkXkSQHRfp7ol5CCy6DrO8Hy10JJEePfdtqZX4miwrMZjRH7pZYwhDZRwSM3cTeiBLpbahbLWLPGEfzsLggCAshHSj3z7QgtIW6EPNAFQLwaXa-mRew/s1600/216.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsoAygNaAky9SPenHp7Pl4y7E-CVkXkSQHRfp7ol5CCy6DrO8Hy10JJEePfdtqZX4miwrMZjRH7pZYwhDZRwSM3cTeiBLpbahbLWLPGEfzsLggCAshHSj3z7QgtIW6EPNAFQLwaXa-mRew/s320/216.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">it's a good thing the snow can be so pretty...</td></tr>
</tbody></table>
<div class="MsoNormal">
</div>
<br />
<div class="MsoNormal">
</div>
Here’s to hoping we will have a boring week soon!Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-13804145430530078712013-10-27T22:10:00.001-07:002013-10-27T22:10:22.215-07:00Fast Forward<div class="MsoNormal">
We are moving forward, Fast Forward in my opinion. </div>
<div class="MsoNormal" style="margin-top: 12.0pt;">
Ophthalmology appointment went
well. My girl was clean and has to be seen in six months. My boy was clean as
well and he needs to be seen in a year. The reason my girl needs to have her
eyes checked 2 times a year is because she uses plaquenil (or hydroxychloroquine<span style="font-family: Arial, sans-serif; font-size: x-small;"><span style="line-height: 14px;"><b>)</b></span></span>. This drug can
cause toxicity in the eye, especially with long term use. </div>
<div class="MsoNormal" style="margin-top: 12.0pt;">
My son was approved by my
insurance for Humira. That surprised me greatly since my daughter was not
approved and receives her shots through the manufacturer’s compassionate
program; Progress. After some investigating I found out the reason for this was
that their initial diagnosis differs. My daughter is diagnosed with
oligoarticular JIA with polyarticular course (oglio: up to 4 joint affected in
the initial 4-6months) and my son with polyarticular JIA(5 or more joints
affected). What it comes down to is that they suffer from the same disease; my
daughter does not qualify and my son does….weird or what. I’m not complaining though,
either our insurance or Progress is picking up the bill for this costly drug. </div>
<div class="MsoNormal" style="margin-top: 12.0pt;">
Drug was ordered and training
booked. The nurse came to our house, same lady that trained my daughter! My son
is trained for an auto injector because his hands are pretty bad. Where the syringes
are perfect for my girl (she likes to go slow, take her time!), the injector
pen is perfect for my boy! Clean, aim, shoot, done in 10 seconds! I was a bit
apprehensive about it but my son was a rock star. He just did it, no problem. I
am not sure if I could ever give myself an injection. You do if you have to, of
course, but honestly, it takes a lot of courage. Pretty proud of both my
kiddos!</div>
<div class="MsoNormal" style="margin-top: 12.0pt;">
So….I now have two children using
Humira. I hope it gives the same relief to my son as it is giving my daughter.
The other day he asked how long it would take for the Humira to kick in because
he wanted his fingers to go back to normal. Time will tell. </div>
<div class="MsoNormal" style="margin-top: 12.0pt;">
What took about 7 years for my
daughter, happened within 6 months for my son. That just shows how fast
research and practice are progressing. Just hoping there will actually be a
cure one day, which would be totally amazing. </div>
<br />
<div class="MsoNormal" style="margin-top: 12.0pt;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYlQqC9mcx-VIJHpxel2wT1DJggcjdC6ycXoUGaY4m_A1YhX1SOi2VWJTJc1S9FqdF-y9CsaYDJQ2GL8fa9eSWLiSEAdioMx22kSogADWT7xCbN7O7jqaQk7uWt6i3UfbACUQ4Md9kOysa/s1600/arthritis+24000.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYlQqC9mcx-VIJHpxel2wT1DJggcjdC6ycXoUGaY4m_A1YhX1SOi2VWJTJc1S9FqdF-y9CsaYDJQ2GL8fa9eSWLiSEAdioMx22kSogADWT7xCbN7O7jqaQk7uWt6i3UfbACUQ4Md9kOysa/s320/arthritis+24000.jpg" width="247" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sadly two of them are mine.</td></tr>
</tbody></table>
<br />
<br />
Here’s to hoping!Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-71925408240323033332013-09-27T22:58:00.001-07:002013-09-27T22:58:03.780-07:00Fall Findings<div class="MsoNormal">
‘T was another long day for us. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Up early for an appointment at 10 in Calgary. After a bumpy
start ( everybody was slow getting up, a warning light in my vehicle told me my
tires were low on air, my car needed to be filled up with gas, coffee was needed and the
boyfriend who came along for moral support needed to be picked up) we still
made it in time. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
10 am – girl child appointment with the rheumatologist. 10
am - boy child appointment with OT. 11 am – boy child appointment with
rheumatologist. 11 am – girl child to the lab for blood work. Noon: time for a
quick snack. 12.30pm- boy child going
for x-rays and girl child needed to reschedule an appointment for an MRI. A
visit with PT was also booked but because of all the running around we forgot
all about that….ooops. A short visit to the mall and around 3 pm we were on the
road again. A bumpy ride again; an accident on the highway turned a 2 hour trip
into an almost 3 hour trip. But the important part is we made it home safe and
sound so all is good.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Findings….I now have to concentrate on two different visits
so I have to stay focused and make sure I don’t mix up my kids! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The girl child was a bit worried the last couple of weeks,
her knee was bugging her and seemed a bit swollen. She was worried she was
headed back to square one again; however, the doc was not overly concerned at
this point. That was a huge relief for all involved! She had some blood work
done and the doc took a throat swap to rule out strep throat. No changes in medication for the moment so my
girl is a happy camper! An appointment for an MRI for both of her hands was
made for October 21 but that is the date that is scheduled for her
ophthalmology appointment so we had to reschedule that. It will be November
now, here’s to hoping the snow stays away until Christmas (who am I kidding….?!).
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The boy child was a bit more complicated this time around.
We had not seen any changes in his joints; the doc agreed and even found some
more worrisome joints that she wanted investigated. She also decided that it
was time for him to start a biological drug as well. We kind of saw that coming
so it was not the biggest surprise, but still a reality check. The whole circus
has to start again: screening for TB to rule out future problems. Not overly
excited about that because it brings back memories about the time my girl had
to be screened and later had to be treated for TB. That was a big obstacle on
our path but it lays behind us now. Besides, what are the odds of both of them
having to deal with that….( but then again, what are the odds of both of them
having arthritis…oh well, we shall see!) So: chest X-rays were done, his hips
were x-rayed ( doc found they were stiff)and we now have to set up an
appointment for a Mantoux-test. Also communication with our insurance company
needs to take place to see what and if they will cover when it comes to
treatment. This is just a formality because we know exactly they won’t cover
what the doc wants to prescribe him, but the documents need to be in place so
we can hopefully qualify for the compassionate program the pharmaceutical
company provides. The hopes are we can start Humira with my son as well. The
doc wants him to use an auto injector because his hands may not be able to
handle a syringe for long….this makes me sad, but hopefully we caught it in
time and can prevent more damage by treating him aggressively. He will need a
medical alert bracelet / necklace now as well, flu shots are recommended and no
more live vaccines. Occupational
therapist provided him with some pencil grips because his fingers hurt when he
has to write a lot and we discussed the potential use of splints in the future.
Hopefully we won’t need them. Overall a lot of information to digest
again. Ophthalmologist appointment soon,
his first one, I hope his eyes are clean. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3n4kyAuSzPEU3iP6RoaeXYfFVrmBx3LU7z3ayrgxlhT1DK5mCS0K-1mv6a6prihKPUWlBQWbb8cr90iSiz1_G6immjBXh1bZnk_lwPwX0n8cFFnwKdli7n9zLfjd_u2O0u51S2Kxrkxf7/s1600/016.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3n4kyAuSzPEU3iP6RoaeXYfFVrmBx3LU7z3ayrgxlhT1DK5mCS0K-1mv6a6prihKPUWlBQWbb8cr90iSiz1_G6immjBXh1bZnk_lwPwX0n8cFFnwKdli7n9zLfjd_u2O0u51S2Kxrkxf7/s320/016.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sad we still have to worry about this</td></tr>
</tbody></table>
<div class="MsoNormal">
While waiting for X-rays, I saw this posted on the counter. It
frustrates me; if you have good reasons to not immunize your children, I hope
you think twice and I hope you realize by choosing not to immunize you can put
others in harm’s way. If my kids with their compromised immune systems were to
contract the measles it can kill them so please people, weigh the pros and cons
and realize your decision can impact a lot of lives. Down here in Canada we should
not have to worry about a measles outbreak in Holland but apparently it is a
concern. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fall is upon us and it is beautiful. It’s not such a pretty
time for kids with JA it seems, there are a lot kiddos struggling at the
moment. My thoughts are with them and I hope winter is not too hard on them.</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDGRds9rZt2jd6ZPkDiU6qHulZ6YEYU6ZvITUepVWiFj2aN-YXPb3csNEvF_jDoXkBWW3ALDyWRx-X6SH28gElWWSNvOnh5oRJUeZce0VyIpt9lzrPuh4Mu4Je_qOsstBNTpBszp5GhGhq/s1600/170.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDGRds9rZt2jd6ZPkDiU6qHulZ6YEYU6ZvITUepVWiFj2aN-YXPb3csNEvF_jDoXkBWW3ALDyWRx-X6SH28gElWWSNvOnh5oRJUeZce0VyIpt9lzrPuh4Mu4Je_qOsstBNTpBszp5GhGhq/s320/170.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">beautiful fall</td></tr>
</tbody></table>
. <br />
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-50439231066302299722013-09-20T22:08:00.002-07:002013-09-20T22:38:08.190-07:00Little Glitches<div class="MsoNormal">
School has started and fall is nearing. The routine is back,
the seemingly endless summer days are shortening and the leafs are turning.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We had a wonderful summer and the battery has definitely
been recharged. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My boy child is slowly getting used to his “daily pill
routine”. So far to no avail though, I don’t see any change in the swelling in
his joints so my guess is something new will be introduced after our next visit
to the rheumatology clinic, which is coming up at the end of this month. Also
complaints of mouth sores so hopefully we can quit the chemo…. An appointment
with the ophthalmologist is planned for the beginning of October. Hopefully
that doesn’t provide us with any challenges. Eyes always worry me…</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My girl child has been doing wonderful, up until a week ago.
She told me her knee was bugging her and was worried she had to start all over
again. Extremely frustrating for her after having had such a wonderful year
where Arthritis has been on the back burner. Her knee does look swollen so I’m
thinking her fears are legitimate. Hopefully this is just a short lived little
set back, with school starting, work, weather changes etcetera being a trigger.
I’m keeping my fingers crossed.</div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
I have found fall is not a good time for our JA kids…I hear
and read so many stories of kids being miserable this time of the year. It’s
easy to let your head hang low at this time of the year, but guess what, that’s
not how we roll; we have so many reasons to be excited and look ahead to a
bright future! We’ve successfully dealt with this before, we can deal with it
again!</div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-81274592639220738852013-07-05T22:00:00.000-07:002013-07-05T22:43:32.365-07:00Country Folks in the Big City<div class="MsoNormal">
School is done for the year and summer has finally arrived
what means a bit of a break for all of us. Both my kids have done well in school this year and they deserve credit for that!</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
Also a good time to get as many medical
appointments done as we can so both school and work are interrupted as little
as possible! With my son recently diagnosed, the whole circus is in full gear
again.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our first official day of summer holidays was spent at the
Calgary Children’s Hospital to have MRI’s done of both hands and wrists. My
daughter and her boyfriend tagged along and spend part of the day shopping in
the close by mall. </div>
<div class="MsoNormal">
We left our house at 7:30 am and came home at 9:30 pm. A
long day for 2 twenty-five minute MRI’s.
Thankful that it is done though, and thankful for the thorough care we receive.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I read and hear many horror
stories about healthcare and how people are disappointed or let down by it. I
can honestly say I am grateful, very satisfied, and amazed by the level of professionalism
and knowledge each and every one of the medical professionals we have had the
pleasure of meeting with, displayed. Perhaps the
most important reason I am so happy with the care we receive is the fact that
we always feel we are being heard, we always are reassured and we are always
treated well, with respect and empathy. My kids are two young people and are
being treated that way, they are not a case, a number or a file, they are two
young individuals , each their own self and I feel they are being appreciated
for who they are, not for what they have.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, all in all, a
long day, but hopefully the results of the MRI’s are positive and give us a
good point of reference.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Next on the medical agenda was a clinic appointment, two
days later. The positive thing about having 2 children with the same condition
is you can occasionally combine appointments, so that’s what we did and that was
a bonus! Boy child had an appointment at 9:45 , followed by an appointment with
the OT at 11:00 and the girl child had her appointment at 10:30, so that was
all booked very efficiently!</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-AaFA9EN2qwOPSYvKqHzf64Mk0NtIyJDhCK5quyBx1UCmaqXjBBC7j2rl4w5k2G69EeLcWS5Rm7iIePmOJNgJFt8lYxR5SH4UBZtM3n7NKjsiiZb2xZNLWMLrIDkgqxlymJNDA3Hans-b/s1600/055.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-AaFA9EN2qwOPSYvKqHzf64Mk0NtIyJDhCK5quyBx1UCmaqXjBBC7j2rl4w5k2G69EeLcWS5Rm7iIePmOJNgJFt8lYxR5SH4UBZtM3n7NKjsiiZb2xZNLWMLrIDkgqxlymJNDA3Hans-b/s320/055.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brother and sister filling out their check lists!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have not seen huge improvement when it comes to the
swelling in my boy’s fingers since he started medication a month ago. The doc
agreed and added another drug to the mix. She started discussing the potential
use of a biologic in the future for him as well, but before we get to that there is a certain
trajectory that needs to be followed and she needs to give the current
medication a fair chance before we can consider another approach. </div>
<div class="MsoNormal">
For now he will be using Methotrexate,
Prednisone, Naprosyn, folic acid and now Sulfasalazine was added to the
mix. A referral for the ophthalmologist
was made and blood work was ordered.</div>
<div class="MsoNormal">
The OT (Occupational Therapist) did an
initial assessment, it will be more thorough with our next visit, since we were
a bit pressed for time this time around! She did give some helpful tips and we
discussed the potential use of night splints in the future. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The girl child is doing well. There was a tiny bit of
swelling noticeable in two of her fingers, but that was it. Since there were
never MRI’s done of her hands, the doctor
wanted them done before she enters adult care so they were ordered.She is starting to
prepare to transition to adult care. </div>
<div class="MsoNormal">
Again, the thought of that makes me sad
and melancholic, because I think we will have a hard time when it comes to
allowing another doctor in to our lives and saying goodbye to the fantastic
lady who’s been treating my daughter ever since she was diagnosed. </div>
<div class="MsoNormal">
Come to think of it, another advantage of
having two children with the same specialist: we get to hang on to her for just
a bit longer! Overall a positive visit for my daughter so we will keep on doing
what we are doing! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Next appointment is set for September, for both of them. We shall see what
that will bring!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For the afternoon my kids were asked if they would be
willing to volunteer as “guinea pigs” for medical students. Medical students
were to practice physical , MSK (muscular
skeletal if my medical terminology is
correct!) exams of the upper extremities in a pediatric patient. From the
Children’s Hospital we moved (approximately 5 km, if even) to the Health and
Sciences Centre, which houses a Medical Skills Centre.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you picture a
country girl finding her way around in a big city you can imagine some slapstick
like actions and I would have to admit you would be pretty accurate in your
assumptions, but that’s a story all by itself and I will spare you that! </div>
<div class="MsoNormal">
We
made it to where we were supposed to be and that’s what matters! </div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
As it appears, medical students usually practice their
physical exams on actors. They were nervous and excited when they were informed
they got to practice on actual patients. Both my daughter and my son were
escorted to exam rooms, each accompanied by a physician ,who was there to score
the formative exam the students were doing and to provide them with feedback. I
sneaked in the exam room my son was in, just because I was curious to witness the
process. </div>
<div class="MsoNormal">
It was great to be part of, nice to see what they focus on, and how
they interact with patients. It seems to me it is a very valuable part of their
education because books and professors will teach you a lot but real life
patients and experience are probably what will teach you the most. I can only
imagine how awkward it must be to actually touch people, that you have no
relationship with, for the first time. You have a couple of seconds to build a
relationship, then you have to focus on your findings, ask questions, observe,
and stick to what’s relevant! There was 10 minutes allowed for each exam and there were 9 students examining each child ( 18 students all together!).</div>
<div class="MsoNormal">
We were treated to a nice lunch and the kids each
got a gift card to Chapters as a token of appreciation.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
An interesting
experience for all of us, and guess what; we even made it back home to our peaceful homestead in the countryside in one
piece! </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBfeL3yd3n4xhuo_tIoglOzScINhkwjLtRSeb-7kyhAam9HpXBgJ7d4NJzRQqhnTfZg5h3aMNetfeu8OamSE5_ytIIYjauvAuyNxHz3cdiG0ATjmF94HH83wSyjpMdvP3fxCUY8KBtGOoR/s1600/001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBfeL3yd3n4xhuo_tIoglOzScINhkwjLtRSeb-7kyhAam9HpXBgJ7d4NJzRQqhnTfZg5h3aMNetfeu8OamSE5_ytIIYjauvAuyNxHz3cdiG0ATjmF94HH83wSyjpMdvP3fxCUY8KBtGOoR/s320/001.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Home sweet home!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-34849147999154844722013-06-06T19:27:00.000-07:002013-06-06T19:31:27.224-07:00Double Trouble<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This morning I had the questionable pleasure to make the
trip to the Children’s Hospital in Calgary for the first time with just my son
and I. Early appointment booked, so an early morning for the both
of us</div>
<div class="MsoNormal">
.</div>
<div class="MsoNormal">
I had emailed a picture of my son’s hand to the rheumatologist
and that was enough for her to see things were not right. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yes, he has arthritis. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After further examination it appeared he had about 10 joints
affected. Not just his hands, she found some fluid in one of his knees as well
and she is suspecting his feet too, since they were stiff. Her diagnosis is
Polyarticular-Rheumatoid Factor negative Juvenile Arthritis (Poly articular :
more than 5 joints affected when diagnosed, Rheumatoid factor Negative: No RF
markings showing up in blood work). I’m not too interested in the particular
label, just frustrated we have to travel this road again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Blood work done, x-rays of ankles, hands and knees were
made, MRI ordered, ophthalmology appointment in the planning, treatment started
and a visit to the clinic booked 6 weeks from now. We started with the lovely
mix of prednisone(steroid), methotrexate (chemo) and naproxen ( anti
inflammatory), paired with folic acid and a stomach protector when needed. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m happy about the fact I followed my instinct.I'm happy about the fact we caught it early. I’m happy
about the fact we have the same doctor treating both my children, I am happy
about the fact we know what to expect ( somewhat) and I am happy about the fact
my son can turn to his sister for advice and support. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m sad about the
fact I now have two kids that have to struggle. More than ever I now realize
Juvenile Arthritis truly IS a family affair. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3GugYmlR8GE9TXZLGrnth8xY8-N1osNPXbXtK5PAKC_I8enAcd5DsEOVYGJl1kVPvOlsPX_Y23S94eAJAJtttCprq5bMQod5POIdZ3zYbQw_fTIqyCARR7L3QGPwgVVK46yOnXb5KH8qu/s1600/003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3GugYmlR8GE9TXZLGrnth8xY8-N1osNPXbXtK5PAKC_I8enAcd5DsEOVYGJl1kVPvOlsPX_Y23S94eAJAJtttCprq5bMQod5POIdZ3zYbQw_fTIqyCARR7L3QGPwgVVK46yOnXb5KH8qu/s320/003.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My bunch!</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
June 9 there is a Walk to Fight Arthritis. Get out and walk,
people, it’s important.</div>
<div class="MsoNormal">
<a href="https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1051773&supId=382250273&msource=2013FBWLK">https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1051773&supId=382250273&msource=2013FBWLK</a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is the link to a page where you can sponsor Claire, she is one of our little friends. Claire and her mom, dad, and brother are Walking for Arthritis. </div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-76787161765676097572013-05-06T19:36:00.001-07:002013-05-06T19:36:44.841-07:00Odd<br />
<div class="MsoNormal">
</div>
<div class="MsoNormal">
It is May and it has been a while since my latest update,
just because life has been well. Busy but well! Now “things” have taken an
unexpected turn from an unexpected angle, but more about that later.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My girl is thriving. I have never seen her this energetic
and this healthy. School is hard work, but she gets it all done. She has a part
time job, for about 3 afternoons a week in a local restaurant and she
thoroughly enjoys it. Both working in a nice team and the freedom the extra
cash allows her are a welcome addition to her daily life! Then there’s the
boyfriend. I can honestly say they are a great pair. They have a lot of fun
together, there is a great mutual respect and they treat each other well. He’s
a good guy and he fits right in. He is also the first non-family member that
has joined us for a visit to the rheumatologist. Was nice for my girl to see
how he truly cared about her life, good and bad.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLtf2S6bpfBGgo83gsNSOSFzLeON-0XViqNzix9ofWOXTRRco9irGbz8hlMgC4zZMsesyLwl31g72onfAFeR1M_jqZ3VYA2PRlgMHxz9D7dkhb0eybh4Mv3crxqSW8ZsDLqVYO9qZDkmNK/s1600/538.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLtf2S6bpfBGgo83gsNSOSFzLeON-0XViqNzix9ofWOXTRRco9irGbz8hlMgC4zZMsesyLwl31g72onfAFeR1M_jqZ3VYA2PRlgMHxz9D7dkhb0eybh4Mv3crxqSW8ZsDLqVYO9qZDkmNK/s320/538.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing the Wii while waiting for our appointment.</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A visit to the ophthalmologist in March showed everything
was clean so no worries there. A visit to the children’s Hospital also went
great. She was given the green light to discontinue folic acid and Dyclofenac.
She currently is only using Plaquenil and Sulfasalazine daily and Humira
bi-weekly. That is quite different from the 14 pills she was on about a year
ago. The one concern her Rheumathologist had was that she is still underweight.
She could use about another 10 lbs. that would put her in the bottom of the
growth chart. She made it to just about 5” (152 cm) and weighs 35kg (77lbs).
Yes; being overweight is challenging, but being underweight isn't easy
either! But I’ll take it, she’s quite
healthy at the moment so no complaints from this lady!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here’s where it gets weird. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLlwyqPQmcgxMUIfccR6GTA4_uLYoR8DMxIS5N5wVWIb0svDQySquwFdxRYHiWsp1yVkAIgYIJ56UNUMC4cLdiBq8wlV1whSsZ7nM8f4rwV9bknxbV5PAoV_BrGn8ejFxcpQN3f0cnOAlv/s1600/050.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLlwyqPQmcgxMUIfccR6GTA4_uLYoR8DMxIS5N5wVWIb0svDQySquwFdxRYHiWsp1yVkAIgYIJ56UNUMC4cLdiBq8wlV1whSsZ7nM8f4rwV9bknxbV5PAoV_BrGn8ejFxcpQN3f0cnOAlv/s320/050.JPG" width="240" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The fingers in this picture are swollen and different from
how I know them to be. They look like the fingers of a person with arthritis.
The frustrating part is they are not my daughter’s fingers. This is a picture
of the hand of my son, the healthy kid. It's not just this hand, his other hand has a couple of swollen knuckles too. I’m concerned and have seen this one
too many times to ignore. Soooo….I guess we will go and see the family doc and see
if he thinks what I think. Blegh. I hope
I’m wrong but my gut is not sending me good vibes. Will keep you posted about
how this development unfolds itself. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the mean time I am going to enjoy the lovely weather that
has finally come our way, it was a long time coming! </div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-18439607390870439002012-11-09T23:09:00.001-08:002012-11-09T23:09:53.350-08:00Meandering into November<br />
<div class="MsoNormal">
Okay, how did we end up in November all of a sudden?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Life seems to just happen and free time is a scarce good! So
much has happened since my last post! Mostly good though! It’s so nice to be
able to live life for a couple of months without really having to worry about
my daughter’s health. That’s a great feeling and I could get used to it easily!
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Since my last post, my son has grown just about 3 inches. My
little man is growing up too and there is no denying it. He is loving sports
and is developing some great leadership skills on the volleyball court, soon to
change in to basketball! He decided this year he wants to play all the sports the
school is offering. I’m so proud of him and so happy that sports come so
natural to him, it is a great way for him to express himself.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My husband is busier than ever and for me a new school year
has started too. I’m working in an elementary school, helping special needs
students reach their fullest potential, help them be successful, independent
and hopefully see them grow in to valuable, contributing members of our
society. I love this job, it’s not everybody’s cup of tea, but it is mine! This
year has been a true challenge so far, but that’s exactly what I like, so it’s
all good!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My girl….wow, where do I start? I
don’t want to jinx it but she has been doing FANTASTIC! I’m so over the moon
that this drug she is on now ( humira) is giving her the opportunity to truly
blossom. She is such a wonderful young
lady with great spunk and a zest for life, it bubbles out of her and is quite contagious!
We went for a checkup with her rheumatologist in October and all her joints are
clean,for the first time in a very long time! we have successfully weaned her off of prednisone and if she stays this “good”
we might be able to wean more drugs when she has her next check, which is
planned for February. Yes; she is a terrible teen at times, but secretly I love
it! ( have to admit I do recognize myself in her, but shhh, don’t tell her!) </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIbrlahRj6C5_iva2sLRU6n9-MTIbXreqVlCjYEaTF8PAFGknfwG7BBREw0qH5TeQp0Mi9OJKJUt6KTFhO7gvlK5scyCHsguAb65gWurH5s4kvEgHqZiP0Ne2ElCINjjWdXebnYg46kXKq/s1600/295.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIbrlahRj6C5_iva2sLRU6n9-MTIbXreqVlCjYEaTF8PAFGknfwG7BBREw0qH5TeQp0Mi9OJKJUt6KTFhO7gvlK5scyCHsguAb65gWurH5s4kvEgHqZiP0Ne2ElCINjjWdXebnYg46kXKq/s320/295.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">see the mischief in her eyes?</td></tr>
</tbody></table>
<div class="MsoNormal">
Her transition to the big high school in town went smoothly and has opened lots
of doors for her. New opportunities, new friends, and yes: even a boy friend (a really nice guy, so it seems!). So
happy for her she has the energy to enjoy this new stage of her life full
throttle, nothing is really going to be able to stop her now!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The one scary thing that is
lurking somewhere over our heads is the fact that her doc is talking about
transitioning to an adult rheumatologist when she is about 17…. She’s almost 16
now so it is creeping up. b I don’t
want to let go of this wonderful lady who has meant so much to us and has been
there for all the hurdles my girl has
had to tackle. Makes me sad this woman can not be part of the rest of our
lives. </div>
<div class="MsoNormal">
For now, we appreciate the care
we are receiving and what tomorrow brings is always a surprise!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For now we enjoy our new normal, what the future holds; only time will tell!</div>
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-16503524826029959772012-07-19T12:24:00.001-07:002012-07-19T12:24:35.444-07:00Summer<br />
<div class="MsoNormal">
Wow, it’s been a while! June has flown by and July is sure
to be gone in no time as well.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
June has been a busy month. When working in the school
system and having two school going kids, June is always one of the busiest
months of the year. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My girl had recovered from her salmonella ordeal and had a
few milestones coming up. </div>
<div class="MsoNormal">
Grade 9 farewell was one of them; her last couple of days
attending our great little country school. A lovely little ceremony was
organized and all 11 of them looked stunning in their beautiful outfits. Am I biased when I say my daughter was the cutest?</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg4vcFR3K9LoJcTHaPjZySv9bRi1snOmZTgMK23S9sjZ-tmlopwPzhZxLsHuC1MUsHAHHLTyGHdo8G4_jc-4ttPW3I6sVhRW9wVHXML9it415RXE-DYyu7hedAd7CQTkinc2u2-MN3fXAR/s1600/084.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg4vcFR3K9LoJcTHaPjZySv9bRi1snOmZTgMK23S9sjZ-tmlopwPzhZxLsHuC1MUsHAHHLTyGHdo8G4_jc-4ttPW3I6sVhRW9wVHXML9it415RXE-DYyu7hedAd7CQTkinc2u2-MN3fXAR/s320/084.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my little beauty!</td></tr>
</tbody></table>
<div class="MsoNormal">
Exams were written, a final overnight fieldtrip to a
somewhat local cowboy village was made and that was the end of 9 years of
Crestomere School.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She’s pumped to move forward and go to high school. I’m not
overly excited yet, but it’s not all about me,right?!!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
June came and went and July arrived.</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
A long anticipated visit from Oma and a nephew from Holland
was in the planning. The weather gods must have known those 2 were coming
because as soon as they set foot on Canadian soil, temperatures rose to an
average of 30 degrees Celsius. A great time was had by all and family bonds
were strengthened. We love living here
and would never go back to Holland, but at times you do miss your family. My kids and my nephew hadn’t seen each other
face to face in 7 years. It didn’t take long for them to pick up from where
they had left off. Plans were made for more visits in the future and I wouldn’t
be surprised if that actually happens sooner rather than later. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonvKCS9PWII0J9_kal_oi8-jhY-yKpLAsXdezxnJ2HXrTmFrDvnNctdfkgc0LmYxS3FG5Ig_cYYkVXRcDRLqO2UF2YL0aIpXOmgJBzdsaodPGt8tPtfagD-rkLLfggOVVw1zQl6OH-qvD/s1600/096.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonvKCS9PWII0J9_kal_oi8-jhY-yKpLAsXdezxnJ2HXrTmFrDvnNctdfkgc0LmYxS3FG5Ig_cYYkVXRcDRLqO2UF2YL0aIpXOmgJBzdsaodPGt8tPtfagD-rkLLfggOVVw1zQl6OH-qvD/s320/096.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">visiting the hoodoos in Drum Heller.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ten days flew by, had tons of fun, showed them lots of the
province, and yesterday we drove them to the airport again. They made it home
safe. Strangely quiet in the house now, but looking back on those ten days,
some beautiful memories were made. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="background-color: white;"> Health wise it’s going pretty good with my girl. The one
thing I am not too happy about is her energy level. She still needs to rest
more than the average teenager. Has to paste herself or pay for it later.
Hospital visit coming up in August or September , depending on the availability.
Ophthalmologist planned for the end of August. I’m hopeful more drugs can be
weaned but am hesitant to state it out loud, do not want to jinx the progress
she has made since on Humira. Still a nasty shot to administer but boy is it
ever nice to see her this healthy. </span></div>
<div class="MsoNormal">
<span style="background-color: white;"><br /></span></div>
<div class="MsoNormal">
On another note: July is juvenile arthritis awareness month
in the states. Since there is still so little awareness for JIA I thought I’d
post this link. This is to show having arthritis is NOT just growing pains and
in some cases truly can be life threatening. The family of this boy knows that
all to well and they keep fighting to find something that works for them.</div>
<div class="MsoNormal">
<a href="http://purpleplayapower.blogspot.ca/2012/07/what-do-you-think-of-when-you-hear-word.html" style="background-color: white;">http://purpleplayapower.blogspot.ca/2012/07/what-do-you-think-of-when-you-hear-word.html</a> </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wish them well and hope something positive will happen for them soon. Parker is a fighter.</div>Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-42368391254538402032012-05-16T21:32:00.001-07:002012-05-16T21:32:36.416-07:00May? Maybe Not.....<br />
<div class="MsoNormal">
Well….we had a few good weeks! May has not started out as
good as April, but we are hoping it will end on a good note! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My girl has been tired for about a week and kept assuring me
she was just tired. My gut told me there was a bit more to it, but one can only
push a teenager so much. She’s not always super honest when it comes to telling
me how she feels. She knows I’ll just drag her to the doctor and she is afraid she
has to up her meds again. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By Thursday she was pretty sick and Friday she asked to stay
home. I told her that it was fine; I was going to take her to see a doc though.
She had given up making excuses so I knew she was really not feeling good. She
was due for another Humira shot the next day, but with these biological drugs
it is important to not administer them when she runs a fever. They could make
symptoms much worse. Family doc was not available so off to the emergency we
went. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At emergency we were helped by a very thorough physician
this time. Both my daughter and I felt she took our worries serious , at least
we didn’t have to fight “that battle” again. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq7PZ4xshp5eY2SCdF50QjyUMSadD6F-y1AHdwjIhaRuYRcu4RB3AtILd0xtfMeIuID0dp6Eh18k85h6-T0KDD1UiJKpKyJoAHp1WeJDJeuPoq8fhCsQLfWNpK1U7M_fJXYuPTJE5hp8dj/s1600/IMG00230-20120512-1212.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq7PZ4xshp5eY2SCdF50QjyUMSadD6F-y1AHdwjIhaRuYRcu4RB3AtILd0xtfMeIuID0dp6Eh18k85h6-T0KDD1UiJKpKyJoAHp1WeJDJeuPoq8fhCsQLfWNpK1U7M_fJXYuPTJE5hp8dj/s200/IMG00230-20120512-1212.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">trying to stay hydrated, both orally and intravenously!</td></tr>
</tbody></table>
<div class="MsoNormal">
Blood work done, urine samples, chest x-rays, blood cultures
taken. She was aching all over and had a bad case of the runs. The muscle aches
suggested she might have the flu so a flu swap was done( up her nose) but the diarrhea
contradicted that. She was dehydrated so they gave her an IV. Doc asked to come
back the next day and again the day after. Luckily she got to keep her IV
needle in so they didn’t have to poke her again the next day. No Humira for her
until at least 3 days fever free. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Next day the fever was down, at least during the day, it
came back at night time. Diarrhea…..still “running wild”. Another IV was given and a bag full of
containers was send home with us to collect stool samples. </div>
<div class="MsoNormal">
On Sunday, (Mother’s Day, I guess this is what being a mom
is about; caring for your youngens!) she got another IV and was feeling somewhat
better. Monday she was supposed to write a PAT, but I thought she should stay
home and sick it out. She didn’t agree and wanted to write her exam. We agreed
that her dad would pick her up and bring her home from school when she was done
writing her test. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We went and saw the family doc after I came home from work,
to find out if there was any news about all the tests that were done. Some
elevated markers in her blood, a bit of blood in her urine, but noting crazy.
Stool samples were not back yet. For now they believe it was a virus. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Next day a field trip to Edmonton….went fairly well, except
for a couple of crazy nose bleeds. With the weather being nice and warm, the
air is dry and nose bleeds occur frequently. I have a weird child, let me tell
you. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today, she’s still extremely tired and now she starts
sniffling with a runny nose. If not better by tomorrow; Doc, here we come
again. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The life of an immune suppressed body is never an easy one. Like I
stated in the beginning of this post; here’s to hoping this month ends on a
better note than it started. My girl’s grade 9 farewell is at the end of the
month, I believe she deserves to enjoy that day. She lost so much weight, I
hope we can still strap her in her dress somehow. Double sided tape maybe....? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com1tag:blogger.com,1999:blog-6922826870681448559.post-47920966372286406532012-04-29T22:33:00.001-07:002012-04-29T22:33:14.278-07:00April's Ending<br />
<div class="ingredient" style="background-color: white; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<div style="margin-bottom: 15px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
</div>
<div class="MsoNormal" style="clear: right; color: #5e594d; float: right; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px; margin-bottom: 1em; margin-left: 1em;">
</div>
<br class="Apple-interchange-newline" /><div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
The end of April is nearing, another month into 2012. </div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
Our visit to the Calgary Children’s Hospital was a
successful one. Clean joints, no signs of inflammation what so ever. Still have
a hard time believing it; it has been a while since we’ve had such great
news! Beginning to hope Humira is my girl’s
miracle drug. We continue weaning the prednisone; my hope is to be done with
that when the new school year starts. First year at the high school. Preparations
for grade 9 farewell are well on their way.</div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
We had a great visit, not just because we got good news,
also because we had the chance to discuss some questions we had, now that my
daughter is starting to get in to her teenage years (with that comes teenage
behavior…undeniable, so we better be prepared for whatever those years have in
store for her!)</div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://encrypted-tbn1.google.com/images?q=tbn:ANd9GcTrx508gMpX622NrdMK-jRm-wguOKcyfCewk93oSsaUMiRqQq7W" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://encrypted-tbn1.google.com/images?q=tbn:ANd9GcTrx508gMpX622NrdMK-jRm-wguOKcyfCewk93oSsaUMiRqQq7W" /></a></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="MsoNormal">
<span style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif;"><span style="font-size: 14px; line-height: 22px;"><br /></span></span></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
I know it’s still a couple of years away, but I dread the
day my girl has to transition into adult care. The seven and something years we
have had the pleasure of dealing with her Rheumatologist have been truly a
blessing. We could not have asked for a more caring doctor. In this time you
build relationship. I know it’s a professional relationship, but if you are
sharing the care of a child, it becomes an emotional bond as well. This lady
has been there when my daughter was at her lowest and has been there to
celebrate her successes as well. This lady has seen her grow up, from the
skinny little 7 year old to the beautiful 15 year old. This lady has played an
important part in my daughter’s life and helped grow from this miserable sick
little girl into a wonderful strong young lady. I’m a little worried about our
wonderful doc. Not sure why, but something is up. We’ll see, our next
appointment is in July.</div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
Also have to give credit to my son. He has been so
understanding and has never ever complained about all the attention my daughter
gets. I feel bad sometimes, it’s hard to justify all the time and focus that
goes to her. I told him how proud I am of him and how much I appreciate his
attitude towards his sister’s illness. Love my boy, he’s a good guy!</div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
I’m also happy to share with you that my girl has won a $250
gift card with her JA video clip. She is over the moon and already has spent
the money about 15 times in her mind. Can’t wait to go shopping with her! A
mini fridge for in her room is what she wants to spend it on. With a bit of
luck she can even throw in a microwave!</div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
<br /></div>
<div class="MsoNormal" style="color: #5e594d; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px;">
Wonder what May will bring us. Hoping for healthy joints!</div>
</div>Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0tag:blogger.com,1999:blog-6922826870681448559.post-23402530347665660872012-04-05T19:23:00.000-07:002012-04-05T19:23:01.156-07:00I Want People To Know... Wow, April sure has hit us with an unexpected surprise! Woke up to a foot of snow this morning! Luckily it won't last long but it took a lot of motivation to get going today!<br />
<br />
Juvenile Arthritis Awareness month may have come to an end, my daughter is still working on raising awareness! Nice to see she is starting to stand up for herself and others dealing with JA!<br />
She made a little video as an entry for a contest held by the Arthritis Society.<br />
I believe it has turned out pretty good!<br />
Here's the link so you can judge for yourself!<br />
<a href="http://www.youtube.com/watch?v=Cn8Xog9R8qY&context=C454a0bcADvjVQa1PpcFPyaMj5FAiCBqr5Ez5atdZPXtHC32ExhJk%3D">http://www.youtube.com/watch?v=Cn8Xog9R8qY&context=C454a0bcADvjVQa1PpcFPyaMj5FAiCBqr5Ez5atdZPXtHC32ExhJk%3D</a> <br />
<br />
The results will be in somewhere next week, would be nice if her efforts are recognized!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZtZrjk1FGPdCRObqb0gM_e_Sh5excB5Pcg7kmD2z8yjHRbjn_vs_h07AyWTNHmYVzLSfPwSCCBCWNLFqjFoLHBo1h6TGkkYbwtWaCYvtVPWmPEVNi_csISqKY7g1OQEyT2dDilYJ0W_nX/s1600/joint+forces.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZtZrjk1FGPdCRObqb0gM_e_Sh5excB5Pcg7kmD2z8yjHRbjn_vs_h07AyWTNHmYVzLSfPwSCCBCWNLFqjFoLHBo1h6TGkkYbwtWaCYvtVPWmPEVNi_csISqKY7g1OQEyT2dDilYJ0W_nX/s320/joint+forces.jpg" width="320" /></a></div><br />
<br />
Easter Monday it is time for a visit to the Children's Hospital again, first check in 3 months. Hopeful to hear good things. We will keep you posted, Happy Easter!Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com2tag:blogger.com,1999:blog-6922826870681448559.post-76492370223223736012012-03-24T21:41:00.000-07:002012-03-24T21:41:36.990-07:00Joint Forces part two!<div style="text-align: left;"></div><div class="MsoNormal"> Well, our run was a success! My girl held a great presentation and we walked the school grounds in the snow. I had anticipated some long faces from the junior high students but I have seen none of that! Walking in the snow was kind of a nice metaphor; yes, plowing through the snow may take some effort, but then again, living with arthritis always takes effort. It was great to see our little friend, who suffers from JA as well, came out with her family. The driving conditions were not great at all so it was truly appreciated! </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"> The students were all great sports and I believe my girl is excited to get her point across and gained a better understanding from her peers. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"> The health reporter, Su-Ling Goh, from the local television station, Global Edmonton, came and interviewed us. She wrote a great little piece and it was aired that same day on the six o’clock news. I truly believe we have done a pretty decent job in generating some awareness and we raised a fair amount of dollars too. Here’s to hoping the first step towards reaching our goal has been set and wheels are set in motion. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhomFK69ufc0FLSwXEHsogVxecrtS6Q9hkb9zPGy9miLajCMhkez4cEkf6Efecsoz1s1ESqjfhC02Bdykvbmzj8nD7eo95Np_oMvUFG_7wdmA2AGELZL-eMRhyoGGTsEwphdYkKfcun7ye1/s1600/188.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhomFK69ufc0FLSwXEHsogVxecrtS6Q9hkb9zPGy9miLajCMhkez4cEkf6Efecsoz1s1ESqjfhC02Bdykvbmzj8nD7eo95Np_oMvUFG_7wdmA2AGELZL-eMRhyoGGTsEwphdYkKfcun7ye1/s320/188.JPG" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Here is a link to the footage that was shown on the news. <a href="http://www.globaltvedmonton.com/video/juvenile+arthritis/video.html?v=2213977900&p=1&s=dd#video" style="text-align: left;">http://www.globaltvedmonton.com/video/juvenile+arthritis/video.html?v=2213977900&p=1&s=dd#video</a> </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"> On a medical note, my girl is doing pretty good at the moment. Her eyes were clear, that is always a huge relief. Next check by her doc is booked for the beginning of April. We need to get some blood work done before that. I have good hopes that Dr. J is going to be very pleased with how things are progressing. I am even thinking we could get the green light were it comes to discontinuing Prednisone….not saying that out loud though, I might be jinxing it!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div>Anonymoushttp://www.blogger.com/profile/15972078466295881442noreply@blogger.com0