Monday, November 23, 2015

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 face and acne!  

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.

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. 

Tuesday, July 21, 2015

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. 

Saturday, December 6, 2014

St. Jude 2014

Marathon weekend! This year did not disappoint. I was ready for a good event weekend, since last year's was cancelled due to an ice storm (!). I was on the pace team at 3:45, so I had a little bit of nervousness leading up to it. 3:45 means that I have to train, and then pray for light winds and a temperature under 65 degrees.

Making some new pace team friends at the expo.
Got into town on Thursday and did pacer booth duty at the expo. Had dinner with my ultrarunning friends at Wiseacre taproom and then Cafe 1912 (when did Memphis get so hip?), and felt so at home. I love this weekend. 

Friday saw an absolute monsoon. It rained all day, hard. And thank goodness, I'll take it. It kept us inside and rested, and got the heck out of town in time for a dry, yet cool and cloudy marathon day. 

My best childhood friend had a 9-year old son who was running his first 5K, and I wanted so bad to see him on the course, but it was too chaotic and crowded around Autozone Park, where the pacers were meeting. We took a quick photo, stripped down to the necessities, put on cheerleader faces, and walked out to the corrals nice and early. It gets real pretty quickly in the corrals, as you realize how much of a target you are. People start to gather around you... most want to talk, want a course preview, what your favorite marathon is, where the toughest hill is, etc. It's tiring to talk so much and be a social facilitator before you even start (in a good way, of course!). Some runners just stand there and look at you, which I find to be even worse. Their eyes are pleading, "no pressure, but I'm scared out of my wits right now and I need your help to do this huge, life-changing thing that is going to hurt so much and we have no idea what is going to happen, but please... just, please." 

The weather was perfect. Low clouds, cooler than expected temperatures, but not cold. Some wind, but the way that the course is laid out meant that it was only in your face about a quarter of the time. Brian, Shannon, and I ran together the whole time. Shannon was an alternate for  a range of times, but somehow everybody turned up healthy, so we had an extra, and we were a great team. Aside from having to briefly stop the runner traffic for a house fire on East Parkway (!), the day was smooth for us. We were a little ahead of pace, but the runners who had settled in with us seemed able to push ahead when we started to slow down to get back to pace. Inspiration can be found in many places, but one sure way to feel the best of life is to watch somebody push outside of themselves to meet a finishing goal. When we finished, I felt a sense of mission accomplishment, and I know that my partners shared that pride. 

Thomas got a great pic around Mile 23. I had a quiet period in the middle of the race, but perked up in the later miles.  

At Wiseacre for the second time in 3 days.

Went back to Wiseacre and Bosco's (again) afterwards and shared stories from the day with my friends. John had BQ'd, so he was happy. Miranda had finished her first marathon, and Scott took 20-something S-caps.  I love this.

My parents were in town, and I saw them for dinner on Saturday. Went to CTK for church with my best friend and her family, and then to their house for her son's birthday party. Said goodbye to my parents and headed back towards midtown, where everyone was at Lafayette's Music Room for what turned out to be an out-of-this-world show from a local brass band. Seriously, Memphis is happening, y'all.  It was one of those weekends that I didn't want to end. So good to see old friends and make new ones. Until next year...