26 February 2009

What's in a week?

A week ago today, I got news that rocked my world. In only a week, a very short week, I have started to come to terms with what this means for my life and that I have to start making tough decisions.

I never came out and said what I was diagnosed with last week. Mostly because I did not understand what was going on. So here it is, the short and sweet. I have:
  • Juvenile Rheumatoid Arthritis (and was diagnosed at the age of 3)
  • Lupus (officially diagnosed last thursday)
  • myopathy (officially diagnosed last thursday), which is a neuromuscular disease in which the muscle fibers do not function for any one of many reasons, resulting in muscular weakness. In my case, my immune system is compromised and is attacking good muscle tissue. Good news is that it is only affecting leg, arm, liver but not the kidney, lungs or heart. So it looks like we caught it early! YAY!
  • and some sort of thyroid issue (unofficially diagnosed last thursday), causing me to feel as if I am going through menopause. Hot/cold sweats are no fun!
With the JRA, I have lived through many a flare up and have functioned as a normal human being hiding the illness as best I could. There were days I had trouble walking, driving, using my upper body, but there was always a work around or maybe it just took me a bit longer. But let's just say I never let it be an excuse. I tried really hard to not let it prevent me from going to school, playing with friends, playing sports or working. I think mostly, that attitude was fostered by my parents and my brothers. They made sure I always felt normal, never felt left out and could try to be/do anything. Thanks fam! But with all of these new UNKNOWN, SCARY TO ME things going on, I am afraid that attitude may change. I mean, I am going to have to take days off for drug treatments and that scares me. I really do not want to GIVE IN to the illness. But maybe, just maybe, I just need to look at it in a new way.

The new drug regime:
  • high dose steroids - can you say side effects and its only been a week! Crazy hunger, random anger (but holding it in check), the shakes and today my hands swelled up, making it difficult to hold a pen. And I am going to be on this indefinitely...
  • aspirin - really not worried
  • plaquenil - been on before not worried
  • Rituxan - which is a drug primarily used for treating Non-Hodgkin's Lymphoma (NHL) and in smaller doses RA. This is the drug I am worried about. It targets the CD20-positive B-cells and is supposed to work well, if it works. It is a chimera antibody (both human and mouse) so there could be rejection issues. But it's still a scary treatment, where I have to go into an oncology clinic and get infused with the drug over a period of 6 hours. Good news, I only have to do this twice. Great news, if it works I will see results n 4-6 weeks!
So in a short week, I have "come to terms" with my illness, accepted an agressive drug treatment plan, made an appointment to find out what is with this thyroid problem, and have a scheduled appointment with an oncologist. This statement freaks me out, I have an oncologist. Weird. But these docs have been administering this drug for a while and they are good at what they do, so why settle?

There are still a million and one little details to figure out and organize, but I think that with this weeks progress, I may get a few hours of uninterrupted sleep tonight.



  1. That's a lot to digest. Lupus is teh suck.

    This might not apply to you. But the way I learned to look at things is that I can do practically anything, I just can't do everything AT ONCE. Almost like my day has 20 hours, or my week has 6 days. The rest of the time I'm not going to be very productive. So I can't pull tricks like working insane hours, going without sleep, and still keeping up with my hobbies and/or social life. If you've been pushing yourself a lot maybe you're used to not having to make those kind of tradeoffs.

    So you can probably do what you think is important and valuable, but it'll be harder to prioritize and realize that some less important things are going to be junked. The biggest deal almost always ends up being work. Around here, everyone wants you to work 97 hours a week, and it can feel unfair to other people to "slack off". Once you subtract those 97 hours, you need a heck of a lot of Sheer Will to fit in the rest.

    People at your job are obviously cool with you dealing with your health. I hope you can avoid feeling bad that you're still falling short for them. Younger people work crazy hours because they want to Advance and be a team player they think it'll look bad if they don't come in late. But people tend not to expect those with other responsibilities (i.e. parents) to work so much. It's really noticeable at places I've worked that parents are expected to be unable to work sometimes, and the extra work tends to be thrown at non-parents. They accept they have other things in their life. So the younger people actually kind of get exploited. FIGHT THE POWAH!

    (Wow this was a total soapbox... but I guess I had to go through the I'm-going-to-work-less-and-be-chill-with-it bit).

  2. Excellent comments by IanM; as one of the people at work, I fully support your #1 priority being your health! I think certain life circumstances, such as parenthood, are better understood and more public, and therefore given a free pass to work less. But that doesn't make those circumstances any better a reason. Everyone's got their stuff to deal with, some more, some less, some just different, but each of us has to be the boss of our own priorities, because only the individual can really know what their own needs are. I'm proud of you for having done that -- you've done so much for others, for the company, and now more than ever you need to focus on yourself and let us focus on you too.

  3. Thanks IanM and MKT! I have been really blessed by my peers at work. They have all made it clear that I need to focus on me. It is a nice relief to have that support at work.

    I have always had a great support group with family and friends and this week all of that support group has really rocked! So a BIG THANKS to EVERYONE!!!!

  4. What a lot to deal with...But remember, if some down time now to treat yourself and figure out what these diseases respond to means feeling better later, then downtime now is the responsible thing to do!

    Also, I'm always down for zombie movies and knitting. :)