Wednesday, October 14, 2015

8 things I wish people knew about my disease

I saw this blog article on Facebook this morning, about some things people living with lupus think and experience, but that no one really knows about on the outside.  It spoke to me, especially during a time when I am feeling about "80% of my pre-disease self".  Many of these things really resonated with me, as lately it's been so hard to present myself as a happy, normal, working, vibrant person.  And then I thought of all of those parents and friends who love and support us with these realities in mind. As always, I am grateful for you.

Thanks for reading.

Feet in the Ocoee River, May 2015

Thursday, October 1, 2015

October 2015

Whoa. So it's been a few months now with some symptoms.  Now, I know that many, many people with autoimmune disease have symptoms all day long, all the time, every day.  And it's a heroic feat to simply manage those symptoms day after day, week after week, month after month... and on and on.

But I've had some issues since around June.  I think I've mentioned it, but my hair (what I had, which was a baby-quality head of hair and peach-fuzz body/face hair) all fell out.  Stark.  Like, my face felt like I had taken a razor and shaved it clean off.  Reynaud's kicked in during the month of May, and I even had an attack in the month of July.  July!  I had a sensation of throat swelling.  I started getting nagging injuries that wouldn't heal, my muscles felt heavy, and my joints were sore.  And then there's the general sense of feeling unwell.  It was pervasive.  All-consuming.  And very mood-altering.  (I'm speaking in the past tense as if it's all cleared up.  Not quite, but I have been feeling a bit better...)

I spent quite a bit of time and money seeing specialists (yes, my Rheumatologist actually had me see a Dermatologist... to tell me that I had alopecia... which I've had since I was 8 years old.).  I switched primary care doctors in order to get a better grip on my perception of control.  I went through weeks (no, months) of trying to navigate the system, figure out what I should do next, being told that no rheumatologist in town is accepting new patients, etc.  Feeling like garbage every day.  Finally, a bloodwork appointment rolls around.  And the biggest frustration?  My CPK was normal.  How am I supposed to validate my symptoms without a diagnostic?

I am either experiencing some overlap symptoms from related conditions (lupus, scleroderma), or I am having early signs of developing a more encompassing issue like mixed connective tissue disease. The most awful thing is that there is no way to know and/or prove it clinically.  When I told my doctor about these symptoms, he said, "How can you be sick? If you're sick, then why is your CPK normal?"  How do I respond to that?  I'm not sure.  Maybe it doesn't matter if he doesn't pile on the diagnoses... maybe he's saving me from having a laundry list of pre-existing conditions.  Would it matter in my treatment plan anyway, whether I was diagnosed as having "polymyositis" or "mixed connective tissue disease"?

I think I would like to switch doctors, but it's not as easy as it sounds.  My first choice isn't accepting new patients.  There's one more option in town at the local hospital.  What if it's worse over there?  She doesn't know my history or understand that I have to run. I have to.  If I submit myself to that process, and don't like where it's going, then what?  It's scary.

I have been feeling just a little bit better over the last week or 2.  I don't know if I'm just having a good couple of weeks, or if the symptoms are abating a little on their own.  I'm glad for a little relief, but there are fewer answers than ever.