Facing Autoimmunity Alone

Some days it's just the pain.  Today, if it weren't for the pins and needles rushing through my finger and toes, I wonder if I would know I was even awake.  Some days you just feel empty, drained, completely nonexistent.  I have no idea why.  I just know it when it happens. Last night, the arthritis in my toes kept me awake until almost 2 am.  I work at seven.  You can imagine the amount of sleep I have had.  At some point, you have to medicate yourself just to go to bed.  Which makes it worse when you try to get up and become the functional person you are required to be for the day.  Go to work, go through the motions of a capable human being, doing your job the correct way, not wanting to put your head down at your work station, and just give in to it all.  It's the hardest thing I do some days. Not giving in. Your skin is the largest organ of the human body.  And ours, as scleroderma patients, hates us.  It attacks us at every turn.  People laugh when they come to my

Raynaud's Phenomenon (though I don't find it phenomenal in the least) is a condition that is defined as constriction of smaller blood vessels in response to extreme cold.  I find this definition to be slightly inaccurate.  Most people don't find holding a bottle of water "extreme cold."  Most people don't find changing out of their clothes to take a bath to be "extreme cold."  Most people don't find cutting vegetables, getting into the refrigerator, or catching a cool breeze to be "extreme cold."  But my fingers surely do.  In fact, I would go so far as to say, a more accurate definition would be, Raynaud's Phenomenon is a condition that is defined as constriction of smaller blood vessels in response to a lack of extreme heat.   There, that works for me. Some people probably think I jest; in reality, Raynaud's probably saved my life, or at least, extended it.  When I was undergoing testing to find out exactly what it was that

I think I love Rocky because there are so many identifiable moments throughout the series between his fight and my own.  We both grew up poor.  We both grew up uneducated.  We both grew up knowing we were meant for one purpose.  And we both exhausted ourselves trying to accomplish our goals.  Though I never knew glory or fame, true love or immortalization in marble, and though I never got my title shot, I fought for it.  And when Rocky falls practically lifeless in Moscow to his knees, I felt it.  One of the most unbearable symptoms of most autoimmune conditions is chronic fatigue.  Let me break that down for you.  Chronic-persistent, continual, uninterrupted, unending.  Fatigue-exhaustion, extreme listlessness, bearing little to no energy, lethargy, burnout.  Still, all of the synonyms, definitions, descriptions under the sun can't prepare you for the depth of the feeling of actual fatigue.  Right now, the only thing I want to do, is lay down on my floor and breathe.  I don

It's stunning what can be held within a day.  Moreso, even in three.  Everything changed.  From death to life, and back again.  Seventy two hours, I made plans to live.  Then lost it all.  At twenty four years old, I was living in my second apartment in Toledo, enjoying a lazy day, lying across my black leather couch, doing nothing but holding a cat.  Typical of me.  I felt a lump in my throat, seemed odd, because I hadn't been particularly sick lately, or felt as though I might be anytime soon.  No one around me had any complaints that led me to believe anything was going around either.  It was May, and though it was Toledo, we weren't buried alive in snow or feeling frighteningly frigid temperatures.  Well I was in graduate school, so I had insurance, I had a doctor on campus, and I had time.  Doctors are anything but tactful when it comes to breaking news to a patient.  Direct and to the point.  "Tiffany, we need to run blood work immediately in case we have to

3 a.m. and here I am, awake, and dealing with an illness no one knows but me. At least that's how it feels. I'm reading through medical journals about treatments and driving myself mad over what is to come for me, knowing none of them can predict my future. The one thing I can tell you, that any dr can tell you, about scleroderma, every course runs a different route, so no ones race is the same. Hooray. I try hard not to be pessimistic about the whole thing; I have lived ... longer than some, and lived a better quality of life than a lot of the people I've met with the disease. This past fall at the gala in Columbus, I actually felt out of place. I was the only "patient" there you couldn't tell had the disease. Scleroderma is very visible; maybe that's why my most recent dr was so confused. Maybe that's why he gave me false hope. But the visible part I take with me, at home, every night behind closed doors. The restless nights, the coughs,