This is beginning to turn into a theme, much like my life has been for the past several years. Every few months things take a bad turn. Doctors usually are rendered clueless and boggled that something is happening again. They begin to search for answers, each time thinking we are getting closer and closer to the key that unlocks the mystery of me. I am always filled with this false sense of hope that the key will be found. I am starting to learn I need to find my hope elsewhere.
I saw my rheumatologist yesterday. I really love the doctors I have on my side. They are all bulldogs. They are all compassionate. They are all grounded. I filled him in on the information I got from my GI doc. I always bring paperwork and lab results so that all my doctors are on the same page and have accurate information. As he looked over it all he just kept saying, "hhmm curious........interesting..........hhhmmm curious." I laughed because that is the way I am feeling. But he is the doctor, he should know more. I decided it is time I really start advocating for myself.
I am tired of seeing doctor after doctor. I travel up to 250 miles for these appointments on some occasions. I wait in the waiting room for 20 minutes or more. I sit in the exam room for 15 minutes or so waiting to see the doctor. The doctor comes in (whatever specialty) and does his work. That usually takes only 5 to 7 minutes. They sign a refill prescription and schedule a follow up appointment. Usually somewhere in the appointment the overlapping symptoms and such are discussed. Often times the doctors question each other or say what they'd do differently had that been their specialty. Never do these doctors talk to each other. So, yesterday I requested that my rheumatologist get on a conference call with my primary and gastroenterologist to bounce ideas off each other. I would like them to come to a consensus and work together. He had no qualms about it, so I felt successful. One step at a time.
Rheumatology is a specialty that is difficult. Often times people are seen by a rheumatologist with very vague symptoms that other doctors have ignored or brushed aside. With this knowledge, I asked. I asked all the questions that eat away at me at night. Not one doctor has flat out told me what they are looking for or what their brain tells them when they see my chart. They keep me on a need to know basis, and apparently they do not think I need to know very much until they have certainty on their side. "What could this be? What would the immunologist be looking for? What do you think is going on?" He answered. "I'd look into MEN syndrome which is multiple endocrine and could cause a lot of these autimmunities you have. Possibly Schmidt syndrome. It's hard to say." I was pleased he had a thought. I was pleased to know he was not clueless. The answer was still very vague, but there were words I could take and research. That's what I did.
I will not bother you with the definitions or explanations of these syndromes. You are more than welcome and capable of looking them up yourself. I will educate and speak more on them if a diagnosis is made. Ultimately, what I got from my conversation with the rheumatologist was similar to what I have gotten from several other doctors in recent years. Yes, we are coming up with answers, but we are treating what we can treat. We cannot replace anything or reverse or cure anything. Quality of life is what it is. I have been told to prepare my family that things will get tougher. We are doing everything we can do.
One step at a time. Each flare up gets us closer and closer to the full picture. I believe with each hurdle I am learning. I will come to a place where I can accept and embrace the totality of it all.....someday.
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