Monday, December 9, 2013

A Tangle Of Thoughts

In and out of hospitals, seeing different doctors, bickering amongst ourselves, after finding proof of a diagnosis that makes more sense has been a relief and a source of anger.

Anger for the last two years as things would get better, worse, surviving, dying, thriving...

Then is all repeats itself.

My GI issues have always been prominent. The fact of the matter is there are too many cooks spoiling the broth, finding a flavor that is distinctive but repulsive.

After some frantic digging, some changes in specialists, new tests to explain the incongruities of old ones there is now something much more solid.

-Misdiagnosed: many food allergies to find there is only one allergy (seafood and fish...a bit more than moderate reaction.

-Misdiagnosed : AAG. This same hospital that ran this and the allergy panel has conveniently mispaced test results. I have POTS. Whether the AAG even existed I do not know, as this only third course of IVIG I have been finding more normalcy but yet in a fit of rage...

-Genetic Testing:  Having a few very real prominent things shw up (namely HSP, or Hereditary Spastic Paraplegia, as well as some very abnormal ranges and micro-deletions that could mean ANYTHING or nothing). I have fired my geneticist. I am still on the supplements as there is something wrong, but whatever it is, it isn't some sort of mysterious, elusive, dramatic saga of living with rare disease. In all reality, the muscle atrophy is attributed to a confirmed (I SAW THE TEST RESULTS THIS TIME) diagnosis that would have gotten worse if a new GI hadn't caught on as we were all scrambling for answers...

After biopsies (if I updated every time I have a test, or a series of tests, then this blog would be all about that. Since I am not a "patient" and refuse to be identified as such), my first colonoscopy, and an endoscopy there is now a diagnosis that makes sense, a treatable one that while on one hand I was already on several medications and treatment course is somewhat similar, but on the other hand is at what I call the "sit over by the pond" time (the only metaphor I can think of about quiet reflection and just being aware and letting go of rage and confusion by surrounding myself with the intensity of Life in general) I feel ready to let it go.

People make mistakes. Doctors don't always communicate. One single test result, that now have since been repeated, as have others, has left me in a spot that is hard to figure out and how throwing darts in the dark and making assumptions without question has produced.

How to live up to my own dedication to Thriving Anyway even when feeling this betrayed, humiliated, and angry in the face of medicine.

I have found out that this whole time, my GI tract has suffered needlessly and this disease progressed further (though not unmanageable, where I find relief). I have been shoved from one doctor to the next, I have been told that I would die, and I know that this isn't over.

I find hope now not in the name of the dysfunction. I find hope in that in science and in medicine is not where wellness is to be found. You don't go to a hospital to get better. You don't take medication to find cures. You don't find your doctor for reassurance and serve him or her royally as one would a deity.

All you find is another person. All you find is a team member or as someone who is wasting time diving down the rabbit hole once confronted and never to be found. And in the end, it does not matter.

In the end, I have found wonderful people online, who fight the same as I do. The fight is the same whether illness is in your life or not.

If someone insists that 2 + 2 = 5 for long enough you learn not to question, but merely accept.

Here is the true answer:

2 + 2 = 4

Severe autoimmune dysfunction + wasting time + asking questions = a real diagnosis backed with hard science.

I have moderate Crohns disease

There is so much now t reflect on. There has been a huge shift in how all of this is viewed. Like when I fist got glasses as a young child. All that was blurry became clear, and it gave me a headache.Things were to bright.

But I had to get used to it. I adjusted.

Things took on new shape. And in learning that less is more, is finding that life with a chronic illness leaves no sure thing for this reason:


Not because of being ill...but because living life holds more mysteries than answers. In growing, we shirk off labels in order to be who we truly are.

All of us have a name.

All of uss have a story.

All of us find ourselves trapped and alone at times, only to find as we flip the light on in the darkness there are still our same treasured ones, waiting eagerly to still share themselves with matter what.

Can any man grasp the depth of this?


And that's what makes this life so truly meaningful. We will never understand many things, but all of us know love, know quiet sources of glee after camping out in the fury of Nature's moods to still be greeted with the warmth and life of the sun again every time.

Here is another chapter.

Now in order to find what is next in the story of all of our lives, we must turn the page.

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