Thursday, March 26, 2009

A frustrating and fruitless day

Today was so hard. A lot of that was due to inept and/or rude medical staff. Another part was some extreme emotional sensitivity on my part which is probably attributable to hormonal issues. I need to remember that due to my PMDD, I need to increase my dose of Klonopin during certain times.

The main thing that got done today was the appointment and testing regarding my recurring gallbladder pain. My fever was higher today, to the point that my eyes were burning and tearing up. So some type of infection is likely in progress. The doctor originally did not take me seriously, suggesting that I had possibly pulled a muscle in the area. But, after the research I did last night, I knew what to focus on to be taken seriously. I explained the localization of the pain and the fact that I had had hundreds of gallstones. He actually took me seriously enough to order an abdominal and pelvic CT scan with oral and IV contrast. He also did a blood test to check my liver enzymes.

The results of the CT came back tonight, after a pile of bureaucratic frustration. But the doctor came back saying (what else?) that nothing was seen on the CT scan that could be causing my pain, fever, and nausea. The only abnormality noted, which has also been noted in a previous abdominal CT is an excess of "waste product" in the colon. Based on my diagnosis of POTS, this is likely due to a dysfunction of the autonomic nervous system. My brain probably doesn't tell my large intestine to contract. This is a very common problem with POTS, and I am lucky it doesn't effect more of my system. However, this can only explain some mild "back-up" and bloating, no other symptoms.

I still have no explanation for the epigastric and right upper quadrant pain. And it is actually the dominant pain at times, which is astounding, based on the level of the rest of the pain in my body. I also have a level of constant pain in this region, which is just adding to my list of constant pains.

The fever is on day 5, and it's quite uncomfortable, because my eyes are burning and tearing up all of the time. This fever must be caused by something. I never get fevers!

I wish someone could just give me an answer.

If this pain persists, I will have to see a specialist. Hopefully, my former gastroenterologist will be willing to see me about this problem, and be able to diagnose and treat it. A cholangiogram would be useful, since it is a nuclear medicine test designed to image the functioning of the biliary system. An endoscopy would have to be the next step, to look inside and see if there's anything they can see. But that's only if a doctor is willing to see me. And then the doctor would have to take me seriously.

Unfortunately, based on my recent experiences, I'm skeptical that any of this will go smoothly, or that a diagnosis will actually be found...much less a treatment that resolves the symptom.

This is just not my main concern right now, and I'd really like to get it out of the way, so I can deal with preparing my body for a much more major operation, and treat some much more serious symptoms.

But my body seems to have other plans sometimes. Nothing ever goes as planned with this body. As a fellow chiarian has said, "When you hear hoofbeats, think zebras, not horses." If my doctors could just learn that I really am a zebra, and if it can happen to a tiny percentage of people, it's much more likely to happen to me than others, then I would get much faster and more effective treatment.

Actually, my wonderful gynecologist said something along those lines today. He said that I'll always surprise people and always challenge my doctors. He said that I've been surprising him as long as he's known me (age 16).

So, I'm exhausted and very frustrated, and the pain in my right upper quadrant is quite bad right now. But so is my headache and nausea...seriously.

Time to spend the night getting this barium out of my system...oh how pleasant.