Choose My Battles

Thursday, I met with my primary doctor, and after re-examining me, she actually apologized as this whole "unsolved health issue" has been going on for three months. She said she feels she has "let me down." She asked me, "Have you ever seen that show House?" comparing my mysterious case to a TV show.

I didn't know what to say. Was my suffering a form of entertainment?

Nevertheless, she took thorough notes and promised to send them off to the insurance company, as short term disability was my only source of income at the time. I checked later with the company, and her information was not sent in.

I called her office to leave a message indicating how frustrated I am at this point. Luckily, my contact at the insurance company stated she will be paying me through this week. I have been in constant contact with her, she knows I'm not one of those people "faking it." Still, she has to update my information periodically because there is no diagnosis yet.

Since I still have not been able to take a full in-breath without pain in my back since December, I asked my primary doctor to be referred to a Pulmonologist. I was frustrated that I actually has to ASK at this point, and it wasn't done for me.

Friday, I was seen by a rheumatologist in Portland who had practiced at UMass Med Center and went to Tufts. Needless to say I was very impressed with him. He spent over an hour with me.

The last rheumatologist in Lewiston spent a total of 7 minutes in the room with me, barring any in-and-out time and joking with office staff. I actually had to ask him to examine the specific sites on my body that were swelling. Because all the tests came back normal, he lumped me into that category that has no specific tests called "Fibromyalgia," which is a type of arthritic condition of the muscles, diagnosed by 11 tender points by The American College of Rheumatology. I feel sometimes this is a "catch-all" diagnosis for some doctors when they don't know what is going on with their patient.

I don't doubt that I have some tender points, but I have had restrictive lung issues since December and swelling in the lymph area as well as the hands. My hair is falling out and my face is swelling. As my primary doctor said, as well as the Tufts rheumatologist agreed, "it does not present like fibromyalgia."
I was diagnosed with it several years ago and it is possible it flared from the illness and all this stress, but in my opinion, it is not the cause of the acute symptoms I am having and have presented with when I became ill.

This Portland rheumatologist suggested I go back and review what the first symptoms were, which started in the lungs. He brought up sarcoidosis, and said that he had a patient whose CT scan came back fine, but when he pressed from a bronchioscope, they found granulomas (tiny inflammatory cells) in the lung aveoli, which caused impaired breathing, as well as inflamed lymph. Sarcoidosis is another autoimmune disorder, and 90% of the patients show symptoms in the lungs and lymph. Funny enough, my step-brother was just diagnosed with it last year and went through the same cat-and-mouse chase with the doctors. They thought he had lymphoma too, at first.

Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease that can affect almost any organ in the body. It causes heightened immunity, which means that a person's immune system, which normally protects the body from infection and disease, overreacts, resulting in damage to the body's own tissues. The classic feature of sarcoidosis is the formation of granulomas, microscopic clumps of inflammatory cells that group together (and look like granules, hence the name). When too many of these clumps form in an organ they can interfere with how that organ functions.

Friday, my blood was taken for the 8th time. This time for my ACE Level, to screen for sarcoidosis. They also tested my CPK and CRP levels.

So, next appointment is with the Pulmonologist... doctor number 9. Ugh.

Well, I've been running a fever all weekend with some sort of flu on top of what I have, and now it's turning into another sinus infection. I just had sinus surgery last September. I think my system is just a bit down... Just a bit.

But what is really cool is that Friday evening, I went to a Shamanic Drumming Group, which was a shamanic celebration of the New Moon. It was the second time I'd ever been to anything like that. Since my Reiki Master/Teacher Peggy, is also a Shaman and a Shamballa Teacher, I decided I should go. Heck I need all the healing I can get right now, and traditional doctors aren't doing too much for me at this point!. Peggy introduced me to a few people who are also alternative healers. Funny is that my hands feel a bit better today so I took that chance and decided to WRITE!

Look at the power of shamanic healing!