Healthcare Reform: Don't Get Sick

I am back to life.  Back to running, back to energy, back to myself.  I had a flare in the 2nd half of 2015.  While it wasn't physically debilitating, it presented some interesting symptoms:

• All of my hair fell suddenly fell out.  I've never had a head of hair due to alopecia, but I have mostly had baby-quality hair that came and went, as well as body hair.  It all came out suddenly this summer.  Nose hairs, the little hairs on your face, everything.
• I got face markings: a rash that went from my forehead down the sides of my face and onto my neck/chest.  I also have redness and red spots on my knuckles.
• My voice got hoarse.  
• I got overuse injuries that wouldn't heal: a shin splint, my inflamed IT band, and one thing after another.  My body couldn't heal itself from the everyday wear and tears.
• I had an overwhelming sense of unwellness.  I didn't feel like myself, didn't have my normal energies or interests, and in general, didn't enjoy being inside my own skin.  

Somewhere around Christmas, I noticed that my face markings faded just a bit, and the body aches/pains subsided.  I've got the faintest traces of peach fuzz on my face when I do an extreme close-up look in the mirror.  I still have the face/neck/chest markings and knuckle rash, however, as well as a little of the voice hoarseness.  Fortunately, this is cosmetic.  Most importantly, I feel like myself has returned.  I feel well and happy, which is a huge relief.  I hope it sticks around.

Here's what I think happened:  Miraculously, I never suffered muscle weakness.  Instead, I think that the Polymyositis turned into Dermatomyositis.  What I felt was a flurry of increased autoimmune activity while that was going on.  I'm just glad it loosened its grip for the time being.

Although a blow came today with a call from the new rheumatologist's office.  I had been struggling with my current rheumatologist, who seemed to have some trouble helping me navigate this flare.  I experienced quite a bit of frustration with the way that it was handled.  It also turns out that he is dropping out of my insurance network, so the breakup had to happen anyway.  There are 4 rheumatologists in a 2-county area here.  I've already burned through one.  I went to the next 2, who are in the same clinic.  After establishing my primary care physician within their network, I learn that they have a 2 year waiting list to get an appointment.  Uh.  What?  I am blown away.  1) I am scared.  What are we supposed to do in the meantime?  What if I get sick again?  I don't know what to do next.  I can't keep navigating a system like this.  2) Why in the hell couldn't they have told me up front that it wasn't going to be an option?  I have been trying to switch rheumatologists for 10 months now.  The first attempt took 6 months, and I got a straight-up rejection.  Not taking my case.  This last attempt chewed up another 3.  More pointless co-pays that are going to result in rejection. 

And once again, I am lost at sea.  I feel absolutely helpless.  

Sitting duck.

Autoimmune face

My face is on fire!  I don't know if you can see it in a picture on the computer.  My face has been red during this "flare", particularly my cheeks and a swath on my forehead/eyebrows/eyelids.  It even feels hot to me, like a sunburn.  And acne!  Nice bonus symptom, there.  Just in time for the holidays!

Too much information:  no nose hairs mean constant nasal drip. Constant nasal drip means painful, crusty nose!

What the.  Seriously.  My freak show of a body keeps the fun coming!

Low-grade flare symptom #12: red eyebrows/lids & cheeks, and scaly, flaky acne. Gross!  

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

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.

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...

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. 

Summer or leave it

Hot and hot.  That's how I feel during summers.  I don't know if this a thing, but I feel like my health blips always come in the summer.  Is that common?  It's never anything drastic, just an increased feeling of difficulty.  My IT band injury always acts up in the summer. I'm more fatigued in the summer. I could probably take a nap every day after work if I let myself.

I'm up to 5 miles of running since being down and out with another IT band flare-up in May/June. Whatever I did to get back to this point, I hope I keep it up and keep this thing moving in a positive direction.

Running near the Ocoee River in May.