The diagnosis.

"You don't look sick is the thing I don't understand." 

No, I don't "look" like I am bleeding out of my head and shoulders or that my body hurts all over or my head might just pop off at any moment. This is the truth.  I can understand that people around me wonder what is wrong with me when I say I'm disabled and they stare at me checking for wounds. Relating to pain beyond belief with no blood took me a long time to accept as well.

The questions for my doctors and from them were always ones that said "why is she in pain...what is causing the pain...and how do we stop it?" After seven years or so the answer seams to be just as allusive as the problem.

The consensus is "nerve damage...neuropathy". My nerves send pain signals to my brain from my neck, head and shoulders and muscle spasms develope in what they call the pain-spasm cycle.

Cycle meaning that one causes the other and the other feeds the one. I don't expect anyone, even my doctors, to understand the pain. Even after all this time of pain I am stunned with it's persistence some days and it (I admit) gets me down.

I want so badly to regain some of the physical strength that I was so proud of all those years ago. I yearn to be even just a snap shot of the strength that I was honored to have.

It was one day that I was driving to work, to a photography shoot, and was excited to meet my clients and take amazing images for them. It was the next day that I was not able to look at the road on my way to work because my eyes felt like hot needles were prying them out of my head. I was clueless to what this meant for my future. It meant that I would never....ever...be the same again.

I was so focused on my career then and taking handfuls of advil, asprin and alleve just to make it through the day. I wasn't aware of how much I was taking or how bad the pain was until someone pointed out the stash of empty bottles that had accumulated in my personals box at work.

When I think back on what led up to that moment in time when my body shut down and over a period of several weeks I went into neurological overload....I remember clearer now than ever the signs that I was in trouble and my body needed help.

My savior was a neurologist. He was caring and atentive and understood the importance of "quality of life". He tried so many different combinations of medications trying to still the muscles in my neck and scare the migraines away. The best he could do is exactly what he did. Still there became need for so many other doctors to step in and do tests and treat me for diagnosis as it came about.

First discovery: blood disease. Second: headache and migraines. third: neuropathy

All these treatments and not one of my doctors asked me how I was feeling mentally. Not at first. They all sent me for testing and ordered pills but no one knew that my sense of identity, pride and happiness were all crumbling away. After three years I was in full on depression about my situation. At that time my husband also seamed to be going through his own crisis. He was so supportive for as long as he could be and then when his personal battle with mental illness became to much to bear he became less and less able to be a part of my trips to the doctors and treatments and even just companionship.

I would look back into the very beginning when my pain started and within a few weeks of me barely able to make it to work I had suffered a near death experience. It had been an  anaphylaxis incident.  I would think "why didn't the universe take me then?" It was clear that things were only going to get worse with me being barely able to take care of myself and now my husband in some other world of his own. Yes, there were thoughts of death and many days of wondering "why me". There was also a new diagnosis to add into the three above....depression and anxiety.


Now, I look back and am glad I stuck it out but this really was just the beginning of learning about  pain and how it would integrate into my daily life . what would I do with it?