Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Getting A Little of My Life Back

Four months into my new medication treatment and I am having thoughts I haven't had in years!

You know you are feeling better when suddenly you find yourself thinking, "I'm bored." 

For years the thought never occurred to me because I was too sick.  Each day was an effort to just get down the stairs, which required a rest period.  Taking a shower also required a rest period. By late afternoon I would start to feel a bit better, and would decide at the last minute what I was able to prepare for dinner for my family.  Dinner not only depended upon what was in the house, but on how much energy I had that day.  On a decent day (where pain was at a low buzz, and the fatigue was not the thick dark wall that threatened to slam down over my eyes at any given moment) dinner would be a nice meal, lasagna or beef stew perhaps.  On a not so good day, where the pain was just EVERYWHERE, and the fatigue felt like wearing a heavy coat of armor that I was forced to carry around, dinner might be sandwiches or Hamburger Helper.  No one complained, and it got eaten!  On a bad day, the pain would be so bad that the only thing I could think of to do was to take a pain pill and sit in a hot bath.  The fatigue would cause me to feel as if I was going to pass out if I didn't lay down!  There were literally times on those days that I could not sit myself up or move my body!  On those days dinner  would either be left to my husband to do, or a phone call to our local pizzeria.  (Again, no one complaining and everyone got fed).

But here I am in the fourth month of taking Xeljanz and I find myself making all kinds of crazy statements!  Like, "I'm bored" and "maybe I should try to work two evenings a week!"

Now, I've been here once before.  Back in 2009.  I got a taste of what a remission might feel like.  And within a few weeks I found myself all dressed up and in some office for an interview.  A job that I was going to commit to TWO evenings per week.  HOWEVER, in my excitement, I went against my better judgment and found myself agreeing to four evenings a week, which is what they needed, not what I needed.

I was SO HAPPY to have a job!  It made me feel so NORMAL!  I finally had an answer to the dreaded question "so what do you do for a living?".

I loved having a job!   Loved having a purpose.  Loved having the money!  But, it was only a month or two before the job that had made me so happy, began to wear me down.  By the second month my husband had to drive me to work, and then turn around and pick me up four hours later.  By the fourth month I had pushed my health so far off balance that I ended up in the hospital!  It took from April of 2010 until now to regain my footing!

But here I am, feeling better than I have in years, and getting pretty excited about it!  There are more useful hours of each day, and I'm truly getting tired of folding laundry and emptying the dishwasher!  I find myself once again contemplating a job.  Just a little one!  Just a mere two evenings a week.  (No, seriously!  TWO evenings this time).

I am having an almost constant inner dialog with myself.  Should I or shouldn't I?  On one hand, do I really want to risk the progress that I have made?  Do I want to chance having such a setback?  But on the other hand, I feel stronger now.  If I really stick to two evenings per week I would have much more time to recover between shifts.  It would make me so happy to feel needed.  And I'd have extra money to put away for our family to finally go on a vacation!  Or buy Christmas gifts!  (OR SHOES!)

So many questions... When you have an illness that is supposed to have remissions, what do you do with the remission part? And if you still have some not-so-good hours of every day, is it really a remission?  Or merely improvement?  And does it count as a remission if it is medication induced?

I've waited years to have a remission!  It's become a mythical creature to me, like a Unicorn! 

There was a time when I'd lost all hope that there would be a remission for me!  But here I am, improving!   

I'm excited about my progress!  Joyous even!  But I think the best feeling of all is that of HOPE!  If I can improve after all this time, YOU  could be next!  It could be any day!  Or the next new treatment you try.  Just keep believing!  Keep the hope and keep the faith!

Until next group meeting,

be well my friends!