Monday, December 5, 2016

Hope remains.

There have been times in life when I have felt true disappointment. Over and over again I sought out answers, direction and proof that what I was physically feeling was not a cry for help mentally. Over and over again I was left without answers, without direction and told to seek out a social worker. Even the doctor who was finally able to tell me there was “something auto-immune” going on would  refer to me as "mild" and the disease likely to "go away" despite me telling him how much my life has been affected and how much pain I am in. Maybe he felt his hands were tied. He wasn’t a bad doctor, but I think sometimes doctors get to a point where they feel they can’t go any further with a patient and so they don’t-even-try

Let me start 9 years ago. 9 years this month I felt a flu like pain come over me. I laid on my living room floor trying to find a position in which my body did not hurt. It was impossible. As I envisioned my body being taken over by the flu I thought this is temporary at least. Little did I know that night filled pain was an indication that my life was forever changed.
Doctor after doctor told me they could not find anything wrong with me. I looked good, I was young. “Go live your life. You have palpitations and a high pulse? Must be your hormones- you are a female after all. You have body aches? It must be fibromyalgia. You have stomach pain? Okay, you must have IBS.”

Some doctors went as far as to say to me I have "had WAY too many pointless hospital tests done for my age. Why was I having so many tests done?" Again and again I was told to "Go live my life."  
You see, the thing is, I was trying to. I wasn't asking for tests. I was asking for answers, I was asking for help. Each door I tried was slammed shut. I knew inside there was more to be found. I was determined to find it. But the road to answers was exhausting and wearing on my heart. I started to wonder if I was making it all up. If the pain, weakness and unending exhaustion I was feeling was just normal for this stage in life. But with the help of some very special people I was encouraged to keep searching, keep fighting for answers. But this time go big or go home.

 So I did & was accepted into Johns Hopkins Rheumatology department.  At first it appeared about the same. Same diagnosis. Same treatment. But a million tests to follow. And at first the results of those tests came in the same way too, all relatively "normal". 

Then it was time for the colonoscopy. The Dr said everything looked good. Of course it did,  I said. Why would anything ever back up how I'm feeling. 
Then a day later the biopsies from the colonoscopy were in. 
I pulled up the results on my tablet almost callus like expecting yet again, no answers. When I read the results I felt something inside I think was disbelief. It showed something?  I must be reading this wrong. I read it again. Collagenous colitis. Well there's something new,  a diagnosis I had never even heard of. 

I took this info with me to my next appointment with Hopkins. 
They haven't had a patient with that condition in years,  many years. 
Then came reviewing the blood work which all came in negative,  with one very big exception.  I have unknown,  unidentified auto antibodies. 

Um, what? 

Antibodies against my body that they have not yet given a name.
No one knows what it means. 
This is why no one could give me answers. 
All the years of nasty, cold and jaded doctors went rushing through my head. 
All the times I left long awaited appointments with such a feeling of sheer disappointment suddenly now all made sense. 
Even my doctor from Hopkins who already knew what I had was real and obvious from prior blood work said that for me, this must finally bring me a level of comfort.
Comfort yes. Comfort in knowing what my body was trying to tell me and then me trying to tell the world was right all along. It was not in my head. It was not a cry for help or an attempt for attention. It is all very real. A mystery still, which stings a little bit, but real nonetheless.

Now this leaves us still in a very big bucket of the unknown. 
They're unsure that the collagenous colitis is the total culprit for all my stomach issues, so they've already set me up to have a new highly sensitive 4 day stomach test to be done this month and to maybe meet with their GI specialists who have an special interest in people like me, a mystery. 

And so we wait. Wait for research to catch up with my body. Wait for someone to figure out what these antibodies really mean. But until then, they have talked of a monthly infusion therapy that insurance of course won't want to pay for, but its an option they are prepared to fight for. But at least there is now talk of treatment and an attempt to get me feeling less like I'm surviving the day and more like I'm living it once again. 
And if it doesn't happen, which she strongly thinks insurance will deny, 
my hope still runs deeper and further than what today's medicine can bring. 

1 comment:

  1. As weird as this sounds, congrats on getting a diagnosis of collagenous colitis. I have been on the same track as you. I have the "official" diagnosis of UCTD, but we haven't been able to find anything more specific than that. I understand how badly you must have wanted ANY diagnosis just to feel sane. I live in MD and have long toyed with the idea of contacting Johns Hopkins rheumatology clinic. Your experience may inspire me to finally get my medical records together and apply. Here's hoping your new discovery leads to improved health. :)