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Three Days of Hope

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 do a biopsy to determine if you have lymphoma."  Lymphoma?  You're talking to me about cancer and I came in here for a swollen gland?  I thought you were going to tell me to get my tonsils taken out! Now I'm dying! 

Thank God for two things, 1. Doctors are rich, and 2. Toledo is cold.  My  next appointment was with a different physician because the first doctor was off to Tahiti or somewhere equally ridiculous, and I was handed off to a more approachable, female doctor, let's say, more on my level.  Why was I glad Toledo was cold?  Honestly, I wasn't, I hated Toledo, HATED, Toledo.  But we had an awesome 6 foot snow drift that hit and I was frozen!  And it showed.  When I said it showed, I meant literally.  This doctor asked me if my fingers and toes turned white when I got cold.  "UH, duh, it's cold."  All my life when I got cold my fingers went numb and I thought it was normal.  Nope. It's something called Raynaud's Phenomenon and it happens to people with autoimmune conditions; sometimes on its own, but typically as a secondary condition to something else.  A breakthrough! 

It wasn't a great breakthrough, I moved later that month back home.  My time was up in Toledo; God knows I had no interest in staying, but I also had no plan on what it was that I DID want to do, so I came home.  But I had to keep going to the doctor.  I found a local rheumatologist and transferred my records and continued here.  Later that year I was diagnosed with Mixed Connective Tissue disease.  A common diagnosis when the doctor tests you for multiple conditions, gets multiple results, and just can't quite narrow it down.  They know there's more than one, they just don't know what ones. 

With autoimmune diseases, there are so many "crossover symptoms" and so many symptoms that come and go that it truly is hard to pinpoint a specific condition early on.  Typically, a person seeing a physician for a diagnosis will see anywhere from 3-6 doctors or specialists over a period of five years or more before getting an accurate answer.  This was certainly true for me.  I saw four doctors before my diagnosis was made clear and it took a total of four years.  I am a true statistic.  But I hope to break some of the others I've read over the years!

The day that I was diagnosed is a day I'll never forget.  I actually found out a few days before I went to the doctor.  See, people who know me will already know why.  I am a fanatical researcher.  I have to know everything about everything I have my hands in.  And when I was told I had an autoimmune condition, well, off I went.  In all those years though, I never came across any information on scleroderma, until a few days before my diagnosis.  To be fair, the doctors assumed I had lupus, and it was all they discussed for a long time.  So it was all I researched for a long time.  There were symptoms that made sense, sure.  But it didn't click.  Those were the "crossover symptoms" I mentioned earlier.  The day I found "scleroderma" in a book I was reading, though, it clicked.  I just knew.  It was, however, only one paragraph in one book that I had ever found.  But now I knew what to look for.

Funny thing though, the doctor called it "limited scleroderma," and I couldn't ever find it in the books.  So I read what I found.  The depression overtook me.  I was going to die.  Ten year prognosis, I read.  Sixty percent chance of death, I read.  Kidney failure, I read.  Heart disease, I read.  Suffocation, I read.  On and on, I read.  My marriage was consumed, my life was consumed, my medicine cabinet was consumed.  I wrote my will, my living will, my final wishes, my healthcare POA, my financial POA, I just knew this was all going to be me.  I was in and out of doctors and hospitals and in pain and suffering and losing my mind all at the same time.  Then I remembered, this isn't me.  I don't fall apart.  I'm stronger than brick walls I have encountered.  What am I doing? 

So I took hold, and I moved on, and I learned, and I conquered.  And 12 years later, I'm standing, still learning, moving, fearing, but still living.

Why do I say three days of hope then?  Recently, I went to a new doctor.  When I told him of my diagnosis, he refuted.  He doubted me, outright.  He is a specialist at the #2 hospital for my condition in the country.  He tested me top to bottom and said he's sorry that someone told me I had such a morbid condition without any visible evidence to propagate such a diagnosis.  And for three days, I had hope that he was right.  I was angry.  For three days I mourned a life I gave to a disease I didn't have to; I mourned so much that I had lost.  But for three days, in my head, I had hope of a normal life that I was getting ready to live, for the first time, as an adult, with no boundaries, as soon as he calls me and confirms my last test result.  And then he called.

"I can see why he gave you the diagnosis that he did now," he said.  Crashed, straight to the ground floor.  But I wasn't done.  I got my explanation of "limited scleroderma" finally.  How it's much more rare than regular scleroderma, why I couldn't fit the mold before, why the information is harder to find, why I don't look like the others.  Why it's harder to treat.  Ground floor removed, black hole inserted. 

Most people die from scleroderma because of pulmonary involvement within ten years of onset.  Let's see, when did they say mine was blocked?  Was that 6, no 7 years ago?  Fifty percent, right?  And there's nothing you can do to stop it from progressing either.  They won't transplant it because it'll just happen again.  Three days, I thought, maybe I'm just overweight, that's why it's hard to breathe.  I can exercise this off of me now! Hooray! 

I had my throat stretched once, and the doctor said I'd have to have it repeated throughout my life because of my condition.  My food won't move down through my esophagus on it's own; it's too weak.  I have to take medication.  For three days I thought, it was a fluke, I just had indigestion.  I can probably take something over the counter now and be fine.  I can probably eat all of the raw vegetables I want. 

I wrote my will, at 25 years old, and while I will never wish facing your mortality on anyone, for three days, I thought, at least that's over with, at least I know what that feels like and it's done.  I faced the holy grail of morbidity and I won.  Three days grace I had at my fingertips, and then they went numb. 

Though I know there are millions of us who face autoimmunity every single day of our lives, and we are a community who help one another, lift one another up, fund raise and support each other in groups and galas, newsletters and homes, each one of us go  home every night, and face a battle alone, as a patient, in our own heads, in our own bodies, that we cannot articulate to anyone, even though we know others understand.  Sometimes we feel stark raving mad; other days we even forget we are sick at all.  With this blog I hope to articulate some of those things we forget, some of those things we are ashamed, some of the things we try not to say, for fear of ostracizing ourselves even more from you, because even though we feel alone because we see ourselves as different from you, we want nothing more than to be close to you, and feel the same as you.  Understand us, by allowing us comfort in explaining ourselves to you. 

Thank you. 
   






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