Wednesday, August 26, 2015

Ok, so what was that about?

That last post came out of nowhere, right?  Well, so do autoimmune symptoms, sometimes.  It's really hard to draw the line between the 78th day of a bizarre symptom (just some abnormality that is ok to remain unexplained and probably goes away on its own) and the 79th day (when you decide it's an autoimmune thing and start to panic).  The big difference is that when you're in "ok, it's autoimmune and time to get help" mode is the DOCTOR PARADE.

I have come to hate the Doctor Parade more than the symptoms themselves.  For example, if I point out that my alopecia has become the most severe that it's ever been, and that it happened fairly quickly, I will get referred to a dermatologist, who will tell me that I have alopecia.  Great, thank you.  Repeat this sequence with the rest of the symptoms, and we're finally ready to address this as an autoimmune issue.  Like, 2 months and $1,000 later.  

And what makes me feel powerless in this situation is that I DON'T KNOW if this is the normal or correct response when I show up in the rheumatologist's office with a few new symptom flare-ups.  Do I seek a second opinion at the risk of delaying treatment even longer and complicating things even more?  Can I even handle one more specialist appointment without completely losing my mind?

Thought much appreciated, folks.  Thank you for reading...

Tuesday, August 18, 2015

But you don't look sick...

... which is the 5-word summary of life with Autoimmune Disease.  No, fuck that.  AI doesn't deserve capitalization.  It's not fair.  I have been feeling symptoms since late Spring, and I'm finally starting to crack, mentally and physically.  Not a flare, just a slow burn of symptoms that have ground me to a halt.  Not a literal halt, work is fine and activities of daily living are intact.  Symptoms started in late spring when I got injured (again) with IT band syndrome.  I started getting Reynaud's hands in May (May?!).  All of my hair fell out, and even small peach fuzz on my face.  I have a lump in my throat that is noticeable when I swallow and talk (I don't know if that's thyroid or just some esophagus swelling).  I have dry nose and a weird rash around the edges, and my lips are dry scales. My back tingles often.  And all of that is livable.  (Except the IT bands.)

This picture is dated May 1 on my phone.  May!  

But the mental effects are something like this:  

1) I am not myself.  I don't feel sick, but I also feel a distinct departure from my well and true self.  AI is as much of a robbing of your identity as it is a disease.  
2) With that, I transition to the sideline, the bench, of life.  I have 2 parallel lives... the one that I should be living, that I would be living.  And then the actual present.  The one where I lay low, put things on hold, and wait for time to pass. 
3) Not wanting to be around others is a hard thing to explain, but it's a palpable symptom.  I don't know what it is, I just don't want to engage. It just isn't me out there.  I can't explain it. 
3) My own head is a chasm of emotion, self-pity, fear, and desperation.  It's too big in there, too deep. I am completely self-obsessed.  It's hard to think about anything else.  
4) I'm not fatigued, like tired or sleepy. But there is a kind of fatigue present.  Fatigued of AI, I guess. 

I have to give up my spot as a pacer for the Memphis marathon soon.  I haven't done it yet, I was trying to delay as long as possible with the hope that I might bounce from this in time.  I'm trying to reconcile from being heartbroken over it, and then getting a grip on myself and putting it into proper perspective.