Long Haul

December already….and this is only my second blog post of the year.

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!

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!

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.

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. 

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. 

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.  

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.

In the mean time: have a wonderful December month and may the new year bring nothing but good!

Summary

First blog entry of 2015, wishing you all a healthy and happy year!

The Holiday season was a nice break to recharge and we were all spoiled pretty good!

I always love it when routines turn to normal again though, I thrive best with a regular routine!

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!

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.

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!

Trying to accurately remember all we are going to do:

• 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.
• 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.
• 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.
• 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 for success as possible,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. 
• 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.
• 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.

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.

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.

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!

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!