Frustrated

Well, I'm frustrated but persevering. Invictus and all that. Here is a summary of my physician situation as of this date:

I worked all Spring to get a referral to a Rheumatologist - because with all the various cascading symptoms it should be obvious to anyone that it is an auto-immune disorder. In May or so, I finally get an appointment for a Rheumatologist in OKC at OU Health. As someone with 21 years working for what turned into OU Health, I felt this was a great chance for someone to finally figure something out. Well, the week before my appointment is when my condition finally started affecting my muscles. I thought it was serendipitous that I had an appointment the next week, until I received a call to say the doctor wouldn't be in the office on my scheduled day. So, they rescheduled me for the first week of August.

The August appointment was mid afternoon. So, on the appointed day, my wife and I drove the 2 hours to Oklahoma City and went in for my appointment. Only to be told the doctor wasn't in and they had called me to tell me the doctor wouldn't be in. I received no such call, and thought they were talking about the first appointment. They weren't. I was crushed. But, they scheduled me for the following Tuesday at 8:30 AM.

So, the next Tuesday, my wife and I got up and left at 6:15 AM so we could be there at 8:30. The doctor was in. She was late, didn't really listen to me or my history and was not interested in my problems. She immediately said it was an orthopedic issue and to see an orthopedist. I insisted the problem was in my muscles not in my joint. She persisted and was quite rude about the whole thing.

I returned to Tulsa and scheduled an appointment with an orthopedist. Thankfully, I was into their office within two weeks. They scheduled an MRI of my shoulder which took another ten days or so. The follow-up appointment wasn't for another 3 weeks. When it finally came around, she said it wasn't an orthopedic issue (which I already knew).

So, I then have to wait around for my follow-up with the Rheumatologist. I thought sure now she will listen to alternative possibilities. I could not have been more wrong. She had not read my history I had given her on the previous appointment. She did not examine me physically. She insisted it was an orthopedic issue and said I was welcome to get a second opinion. Knowing how long their appointments take, I simply left.

I've made an appointment with my PCP of 28 years. It is Monday. I'm going to ask for his advice on how to proceed.

Physically, I'm not doing well. The pain has changed over the last several months. I no longer the constant pain I was having, instead I have pain upon flexion of my arms, shoulders, or pectorals. This pain, though, is intense. For example, any of the following cause level 10 pain that lingers afterwards: lifting my elbow to my side to where it is level with my shoulder, reaching down or up for something, flexing my pecs as if I was a body-builder.

The spread from my right to my left side and my pecs is concerning. The original article I read talked about how the muscles would tear in the final phase and how the patients would self-limit their activities. It also discussed how the long muscles (arm, legs, lats, pecs) all would continue working once attacked by this process but that the smooth muscles (intestines, diaphragm) would not. So, this will culminate in my bowels not working and/or me being short of breath. I don't know how long I have, but it is weeks.

I feel fortunate to have experienced as much life as I have these last 20+ months after I realized I had entered into the final major transition. I still believe I did the right thing in that hospital 28 years ago this month, when I used the diet coke to stop my polyuria and cause a pseudo-stroke which, in turn, caused my pituitary to take over the duties of balancing electrolytes. I would have died that day. I was saved by what almost seems divine intervention.

The fact that the singular article that would detail a temporary resolution to my problem was in the place where I had confined myself and that I would, somehow, find a way to replicate the results of an almost century-old human experiment still boggles my mind, but it is obviously true as it detailed everything that I would then go through as a result of the treatment.

It is equally, or possibly even more mind-boggling that the research was redacted from medical science and concealed. I can understand why - the outcome is frankly brutal and causes decades or symptoms with no clinical findings. Yet, there is some serious science involved. If the pituitary can take over electrolyte balance - including blood sugars, might someone not benefit from that? It is obviously repeatable. I did so. Yes, the right circumstances have to exist, but it is repeatable. This also means someone else, somewhere will accidentally create the same situation - and that person, too, will find a medical community unable to treat them and they will ultimately be written off as a hypochondriac until their death. I think if I didn't know what I have, I would probably be so depressed I would commit suicide, but I do know. I am right. I have experienced 28 years of this illness. I know I was prone to SIADH, I know the things I experienced were all real. There is literally no other explanation. When you have eliminated the impossible, whatever remains, no matter how improbable, must be the truth.