So, in addition to the no sugar, no flour experiment (see here), I began a new medication yesterday. This seems like a lot of change all at once. And change usually menas I have been feeling super rough, so experimenting needs to happen to find a solution to fix the rough and put a patch on it. But not this time. This time things have been fairly status-quo, well as status-quo as things go in my world. I've not been feeling bad. Actually, I've been feeling pretty good (relatively speaking). But that relative feeling of good can lead me to a place of complacency, where a good surprise dose of bad can sneak up on me and take me out for a few days. But not this time. Nope, I am in fighter mode. I am on a mission to find a solution that works (at least for awhile). I want to at least try and stop the damage I see getting worse every year this continues. And if something will help, I am on board! Let's try it. It's not like it can get worse, right?
Prednisone is the one medication that has worked over the course of the last 9 years (yep, I've been sick for that long...insane!). It was the medication that took me from thinking at 24 I would have to move home and be taken care of by my parents for the rest of my life to being able to know I would be just fine on my own, like a 24 year old should be. And it happened in less than 5 days flat! Incredible. But with that triumph comes some consequence. It leads to weight-gain (for reals), a roundness to the face (moon-face), facial hair (always attractive on a lady!), and other non-visible things like brittle bones, anemia and other fun things. So after 9 years and many ups and downs with that miracle maker it is time to see what life could be without it.
While in Seattle, my amazing doctor started to discuss the idea of Remecade with me. He is a crazy smart dude, with an incredible bed-side manner. (Loved him!). After some discussion and research, I got on board. I've been through every other treatment that should work, but they don't.(Hence why I am always described as a mystery by medical professionals.) The prednisone is the constant and winner when it comes to keeping the symptoms and damage of my disease at bay. But it creates its own damages. It was time to try something new (and maybe a little scary).
Then I moved.
And as any doctor who I have seen does, my new doc in DC needed to confirm that I actually have sarcoidosis, since I do not fit the mold at all. It was confirmed. Then she also suggested Remecade as a treatment plan. So, after much less effort to gain approval from the insurance company ( 4 weeks instead of 3 months), I began the Remecade treatments yesterday. After going in for my first treatment, I do understand why insurance fights. It's pricey and once you start, you always have to go. There's no stopping and starting this mediciation because once stopped the body becomes immune to it's power. (The body continues to amaze me!). And there's a lot of expense involved. You go to the hospital for the infusion. I didn't mention that this can only be administered via an IV in an infusion room. So, you have nurses, the room, the juices offered, the tylenol and benedryl (all at hospital prices). And that doesn't include the cost of the medication. It is mind-boggling. But I am lucky and have a job that provides health insurance. Insurance that took the information provided to them and decided while it may be an experiment, it just might work in the favor of their patients health. (Maybe a few calls from said patient in her sassy pants mode put them over the edge...).
Yesterday, I geared up and put on my big girl pants (as my brave friend Bridget would say) and went for my first infusion. I really didn't know what to expect. And while I put on a brave face, my heart was racing (and my blood pressure skyrocketed!) and I may have teared up a tiny bit. Anne, the Infusion Dept Director and her cohort Joanne immediately made me feel a little more at ease. They were kind and expertly inserted the IV (I always get nervous because I have wonky veins..of course). I was still a little nervous as I sat in the room alone and started the treatment. I have never been more grateful to "santa" for a gift than I was at the moment I busted out the iPad and watched a little Downton Abbey (thanks to my friends Emily and Samantha for making me wacth the season 2 finale, I am now hooked). So instead of being nervous, I relaxed with some apple juice and watch as the Lordship and Ladyship handled their random affairs. Before I could start a third episode, the treatment was over and it was time for me to head out.
I will return in two weeks for a second treatment, then again in 4 week after that. From there, if things go as planned, I will visit the infusion center every 8 weeks for a little visit with Anne and Joanne and continue to catch up on Downton Abbey.
I am not sure what the future holds and if this will be the thing to help my cause, but I am glad to be giving it a go! Fingers crossed.
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