Tuesday, September 24, 2013

A new illness, and a perfect day.

So, it's been awhile since I've written and I feel the need for an update.  I believe the last time I wrote I was still in basic hell.  I was in bed about 22 hours a day.  Thankfully, that has ended.  My migraines have improved drastically with daily opiates and new preventives.  The choice to move to daily opiates was a big one.  It felt like giving up on standard treatment in a way, but then again, it didn't feel like there were many choices.  So in the end, it seems to be working.  My headaches are a low level everyday still, and they spike to true migraine still on a regular basis, but I cherish that low level headache time.  I consider that a big improvement.

In the meantime, however, about a month ago, I began having pain in my hands and feet on a daily basis.  I saw my primary care physician, and after some blood tests, we discovered that I have an autoimmune disorder and I was referred to a rheumatologist.  We don't know which disorder I have, because there are many different autoimmune disorders, but once I see the rheumatologist, she will narrow that down and give me a diagnosis and start treatment.  I can't wait for that.  I just want to be treated and feel normal again.  Since I have seen the PCP, the pain has spread to other parts of my body, so I have general body aches all over daily.  I am ready for that to stop.  When I have that pain and a migraine, it just adds insult to injury, you know?

So, anyway, I want to tell you about my perfect day yesterday.  It was so nice.  I woke up at 8 a.m. and felt good all the way to bedtime at 11 p.m.  That hasn't happened in SO long.  I just ran around, got some errands accomplished, shopped, visited friends, went to a Democratic Women's meeting, then out with friends--I did SO much and felt great through it all.  It was wonderful.  I can't remember the last time I felt so good.  My body aches weren't even that bad, and my head didn't bother me at all.  It's just almost impossible to explain the giddiness I felt last night over my great day.

I wish I could say today has been so great.  I am afraid today is back to real life, complete with a migraine, full body aches, and emotional swings....  I think yesterday was just a carrot representing the life I want to have, dangling in front of me just out of reach.  But surely I'll get there, right?  If it happens once, it surely can happen again.  At least that's what I am holding on to.

Thanks for reading.


  1. "Welcome" to the world of autoimmune diseases......sorry you have to join us!!

  2. Just reading this gives me hope. If you can have a perfect day with migraines and and autoimmune disease, then surely I can with "just" the migraines. Thank you. Thank you for putting this out there.