Leaping in to March

      I’m sharing my house with a 15 year old….I’ll leave it in the middle whether  it’s a blessing or not! It sure is entertaining though! My girl was born on Valentine’s Day so it always is a bit of an extra special day for her.

     This is just about a whole month without too much arthritis hustle. Sometimes there is the occasional “extreme fatigue” period, battery is empty and need a weekend to be recharged. That’s about it though. I’m keeping my fingers crossed…

     Even the nasty Humira shots are beginning to get somewhat easier; last one went in without shedding even one tear.

     March first it is time for her bi-annual eye exam at the ophthalmologist, full dilation and check. Hope everything will be clear. There should also be a Hospital visit for a check. Hopeful we can finally stop prednisone, but not convinced until the doc actually speaks those words.  Pretty weird to be able to go for just a check up, no treatment or nothing!

     March is Juvenile Arthritis Awareness month. I’m working on getting “my” run organized….slowly but surely things are starting to come together. Have been communicating with The Arthritis Society and they have been helpful, just a few things I want to work out yet! Will have an online pledge opportunity for those of you that are interested in sponsoring us! Will post it as soon as it is set up.

     Going to be a busy month, but it will be good! We are experiencing a bit of winter at the moment, I can’t and won’t complain about that, given the extreme soft winter we have had so far! Now here’s to hoping the snow will be gone by March 22^nd when we are having our run!

  

 The extra day 2012 offers us, our rare leap day, February 29^th, is also Rare Disease Day. Many auto immune diseases are on the list of rare diseases. Thought I’d point that out to you!

     Have a wonderful March, Spring may be just around the corner!

Joint Forces

    Okay…now the focus can shift a little bit, with the holiday season out of the way and no more frequent trips to Calgary. I’ve been thinking for a long time about organizing an event where I could raise some funds and some awareness at the same time, for Juvenile Arthritis. The thinking stage has passed and now I am actually organizing a JA walk/run hosted at the school that my kids attend.

    It has frustrated me immensely that there is nothing out there for kids with JA. No options for them to meet peers, exchange experiences, forget about their never ending struggles for a bit and just have some fun for a change. So many juvenile diseases have advocates and opportunities, not JA though. The public awareness about juvenile diabetes, epilepsy, Crohn’s disease, asthma etc. is much greater than for JA. I’m not sure what the reason is, maybe it’s just not sexy enough, maybe it’s because there is no famous face to it, honestly, I couldn’t tell you. It is because of the lack of awareness people often don’t understand the seriousness of this condition. I will keep trying to change that.

   Even after contacting The Arthritis Foundation I found out they really didn’t have anything for our youth in their program. Sure, they have information, brochures, educational programs, but most of them are focused on adults. I was quite shocked to find out there is nothing out there that helps kids who are dealing with this crippling disease every single day of their lives, nothing that lifts their spirits, nothing that recognizes or encourages them in the battle they are battling.

    Research is important, but seeing my child with a smile on her face is important too. So, Mohammed decided to go to the mountain. I’m currently investigating if The Arthritis Society is willing/able to offer camps, day trips, events etcetera for our youth, if funds can be raised for that.  I want to work hard to raise money, but I also want monies that are raised directly benefits our kids. Hopefully The Arthritis Society is willing to designate funds raised specifically to towards that goal . If that’s not achievable, I am investigating the options of setting up a charity event at the Alberta Children’s Hospital Foundation….we shall see!

   In the mean time, we ARE organizing that walk! We set a tentative date for March 22. My girl decided to do a presentation and we are planning to do an assembly. I’m exploring some options to get some T-shirts printed and looking in to incentives for the students to raise some pennies! We’ll probably be setting up an on-line fundraise page, as well as the old fashioned pennies and quarters. I’ll keep you posted; hope to find out more soon! 

    In the mean time; this is the logo I designed for T-shirts, pretty cute huh!

...Out With A Bang!

    Another year coming to a close…and what a year it has been again. We’ve had a nice Christmas with our family and now the wait for the new year is on. Time for a fresh start!

    A couple of weeks ago my daughter and I went to the ER so she could administer her second dose of Humira in a safe environment. Despite the fact we “ran in to” a very rude and blunt nurse, she gave herself a shot and there was no reaction this time around. The first time around must have been a fluke, or her blood sugars were too low, I don’t know, I’m just happy she was ok!

    So a new chapter has started. I’m keeping my fingers crossed that this will be her miracle drug! The last day before our break we went to the Children’s hospital for another treatment. After a visit from the rheumatologist we learned that this would be the last IV! That was great news. I can’t say I’m upset about the fact we don’t have to do the monthly trip to Calgary, 15 months has been enough! Also, since we now started a new drug, we can stop giving her the chemo. My girl was excited to finally see some things go instead of being added! Next clinic visit will be in March…wow, can’t believe we get a break for 3 months!

    It was a big burden, those IV’s every month, but it also has given her a year where she was able to undertake more than I have ever seen her do in the past. It has boosted her self esteem and has empowered her greatly! I’ve “secretly” watched her, when she was playing volleyball, excited, being part of a great team, being normal. I have to say that I was quite emotional at times. For her to be able to take part the way she did; that was priceless and that is something no one can ever take from her!

    Wow, 2012 is just around the corner…I’m getting old! I’m quite excited to see what the future holds for us. We’ve seen a lot of misery happening around us, I’m hoping this New Year will be an opportunity for many to start fresh and optimistic.

    From my house to yours: wishes for a happy, healthy and prosperous 2012.

Good things are going to happen; stay tuned!

Ugh....

    Well, I guess we should start with the good news!

    My daughter’s friend has found her missing sister. We are so happy she is found safe and sound.

    My daughter had her IV again last Friday. The doc was happy with how she was doing so lowered the dose. Hopefully she will do well on this lower dose. If she does do well, the next dose can probably be done orally so NO MORE IV’s….potentially, keeping my fingers crossed.

    Last week my girl was supposed to get her training from a nurse to start Humira. The nurse had to cancel due to bad road conditions, so we rescheduled for today. I was a bit apprehensive about it since she has now been without a biologic for a week and a half.

    Nurse showed up and prepped my girl.

    Unfortunately it did not go well; she had an allergic reaction. The nurse told me later it was almost an anaphylactic shock. She was dizzy, lost her vision, her throat tightened and her chest felt tight. She was as white as a rag and had cold sweats, all of this with the needle still dangling in her leg. Luckily she never really lost consciousness, but it was close and pretty scary.

    As you can imagine; she’s quite shaken up by this all (and so is her mom). It also means that we will not be using this drug again, so, once again we are looking in to other alternatives.

Another day in the life of…..

    Really ready for a solution right about now!

November News

    Wow, time flies! We are in November now and today I woke up to our first day of snow. There has been a white day before this one; however we were in sunny Mexico so we missed out on that!

     Overall my girl has been doing quite well. She has been playing volleyball hard and she was able to play most games. The last few weeks she has had to sit out some and also had to stay home for a day or two since her energy was gone.

    A lot has happened since my last post. First of all, my girl got approved for Humira, using their compassionate program. We are going to start November 17. Hoping this will be the one for her! She had another IV treatment done; we are almost ready for the next one, next week! The Doc told us her joints are looking the best they have in a long time so that’s exciting! She is wearing contacts now and she looks GORGEOUS! So far she is tolerating them well and only once did she sleep with them so far!

     School is going well and both her and my son are having a great year. In social studies they were learning about the Canadian government and for their final project they made a rap about it, it’s pretty cool, they posted it on YOUTUBE, check it out! http://www.youtube.com/watch?v=qxKcHF-Zv4s

    With Volleyball they made it to the CWAJHAA (what stands for Central & West Alberta junior high Athletic Association…..I think!) so we have a few more exciting weeks coming up!

    We just came back from our little get-a-way; we went to sunny warm Mexico. It was relaxing, rejuvenating and definitely planning on doing that again! Mazatlan is where we went; the Emerald bay, pearl of Mexico, and beautiful it was. Enjoyed a beautiful catamaran trip to an island, where we had a fantastic lunch and had the best fish I ever ate, horseback riding (sort of!) and an exhilarating “Bananaboat” ride! Went zip lining, an experience that was both unforgettably beautiful and an adrenaline rush! We rode a Mexican limo and visited a tequila distillery. Swimming in the ocean, finding seashells on the beach, lying under a palm tree looking at the coconuts, enjoying the food and the good natured people….yup, life is pretty good! And then you come home and the next day there is that fluffy white stuff on the ground; reality check!

                                               View from my deck chair!

               The reason these rock formations are white is bird poop....honestly!

    My girl took her last (ever?) Enbrel shot in Mexico. Next week she will be trained for Humira. I’m expecting it to be similar to the enbrel shots, we shall see! Added bonus for her is that this one only has to be administered once every 2 weeks instead of twice a week. Flu shot coming up and IV too. Hopefully after this one we can start weaning her? She’s currently on 5mg of oral prednisone, with a bit of luck we can be done it by the end of this year, and then, fingers crossed, getting rid of the IV’s.

    On a concerning note, we found out while we were in Mexico that a former student of our school has gone missing.  My daughter is close friends with this young girl’s sister and we are very concerned about her well being. I will post a link, please check it out, hopefully someone will recognize her.

http://www.albertapolicereport.com/2011/11/09/rcmp-ponoka-investigate-missing-person/

    Please keep your eyes open for our friend. 

full throttle!

Another visit to Calgary lies behind us. So far it doesn’t sound like we will be able to stop with the infusions, but joints are clean and look the best they have looked in a long time AND we can go down another mg of prednisone, 5mg a day now. Also the lowest it has been in 2 years. Hope we can get over this crucial point without any flares!

About her treatment plan…we’re playing a bit of a waiting game at the moment. What I posted in my last post isn’t current anymore!

My insurance company has denied my girl for humira and remicade but has approved orencia for her. Doc thinks humira would be the best way to go, so now we are in the process of trying to enroll her in to a compassionate program. We shall be patience and wait and see what the future brings! 

Probably a good thing we have no clarity yet because we won’t be able to start before we’re halfway through November, since we have our little trip coming up! (Insurance will not cover pre existing conditions if they are not stable for the past 90 days or have had any changes in medication for this period of time…oh the joy of figuring this all out!)

A successful visit to the dentist also is in the past! Boy did she ever worry about that, but she did great and now thinks she was worried for no reason! Remember that for next time, girl, will make life a lot easier for you! (even a simple cavity can not be filled without some anti biotics in her system.)

   

Both kids are off to a great start of the school year. My son has to get used to the routine of junior high. Sometimes it is tricky for him to organize his brain and all the new steps and routines are hard for him, but he’s trying really hard and I’m super proud of him. My daughter is excited for her last year at this school and is already thinking about her farewell. Can’t say I’m equally excited about that, but I guess it’s all part of the process! 

Volleyball season is in full swing again and both kids are involved. So far so good and I’m extremely happy my girl feels able enough to participate the way she does. Keeps me running around like the Tasmanian devil but I'm excited to be doing that! We’ll just grab what we can for as long as we can!

Ophthalmologist gave her the green light for contacts so we have set up an appointment with the optometrist to get that done. I love the way her glasses look on her, however, she has such gorgeous eyes, I believe they don’t need to be framed by them!

Next treatment in a week or 3, flu shot coming up and keeping fingers crossed the busy season will go by without flares! There was a bit of complaining about being tired and drained going on for a bit, but I’m just going to ignore that!

We’ve had a gorgeous fall so far, with temperatures high above seasonal. Now here’s to hoping the snow will stay away for a month or 3 (who am I kidding!) so the drives back and forth to Calgary will continue to be “relaxing”.

To be continued!

Summer mode off, Fall switch on!

Wow, can’t believe Summer is coming to an end! Tomorrow my kids go back to school, they’re both quite excited! They’re lucky little stinkers since I have been back  a week already! We’ve had a bit of a slow start to our summer, weather wise, but the last few weeks have been nice. Tomorrow it’ll be raining so a good time to get back in to the routine!

Looking back on the summer, we’ve done a lot and it flew by. Last week we went for our semiannual check up at the ophthalmologist, all was clear so that’s good news! Next day it was off to Calgary for another treatment. Mentally she's doing great, physically we're not quite where we should be, considering all the medications she's taking.

In the mean time my daughter was denied for Humira ( I don’t think I feel too bad about that!) and a week or two later she was approved to start with Orencia. This is another biological and is given intravenously. Not sure when we will start this, her doc was not available when we went for her last infusion, so we’ll find out next go around.

We have a little family get a way coming up the beginning of November and we need medical insurance for that. Especially with my daughter being immune suppressed we can’t take any risks. A clause in the policy states that pre existing conditions have to be stable and medication changes cannot be done 3 months prior departure in order to be eligible for coverage. Another reason to hold of f the new meds for a little while! The things you have to be aware off when dealing with chronic conditions!

Went for a refill of our prescriptions and the pharmacist did not have all that we needed. He found a solution but told me the whole drug shortage thing is really starting to become an issue. I truly hope we won’t get in trouble at some point; with some drugs it’s just not safe to stop them from one day to the next. Keeping fingers crossed.

I’m glad to see my kids so excited for this new school year to start and hope it is going to be a fantastic year for them. Feel excited myself too, always love seeing the eager little munchkins coming in to their new classroom with backpacks that look bigger than they are, wearing their pretty new outfits! Let’s see what this year has in store for us!