Here in lies why I am so bitter and jaded against the medical world. For the clear exception of a few of my doctors . My Primary Care, OB, and Gastro have been my strongest advocates. However, what I have going on is way beyond what they can do.
I might have mentioned that when I was at the Cleveland Clinic. There was a Gastro there that hooked on the fact that he wanted me to do this test. He said it is very rare. But, he had to check it out. Because he said that on a wing and a prayer...it matched so much of what I have. I, of course was thinking "whatever" in my head. Yet, another test.
This test is Porphyria. It is so complicated that I don't remotely understand. They are looking for acute porphria. And of course, only a handful in the ENTIRE country know how to deal with this disease. Only two labs in the country handle the testing. Having this disease is sooooo rare. But, I have always been told that I never fall into the "clinical text book." And guess what? My tests came back this week while in the hospital. But, they were from CC because it takes a long to get back. These were from the Cleveland Clinic. Many of the tests came back abnormal. Here I am again, rare. The doctor in Cleveland called my husband and said that the leading expert in this rare disease wants to take up my case. I am not sure where that doctor is in the world. But, he said it is very compelling that I have it. And there is a cure.
Well, being at the Univ. Hospital this week...they read the results and said " it is so rare, that we don't know what these results say from CC." They decided to ignore Cleveland Clinics findings and wanted to do their own. They discounted CC's test. And said they doubted seriously that I had something so rare. I just shook my head...
My advocate doctor always told me..." Going to different institutions....doctors don't like that and it is a pissing match" Instead of working together....it is quite the opposite. It is all about making sure they proved the other institution wrong. This is not made up. I have been in the hospital long enough to know what is/has happened. So, the Univ. Hospital said this week is "you have Chronic Abdominal pain". I shared with them my thoughts on making a diagnosis while only seeing me for a few short minutes and not looking at me as a total person, if you want to call it that.
That is another Oprah show. Really....I was shocked at myself for saying how I felt/thought with conviction and making sure they knew that if something happened to me because of their negligence that I will leave a letter documenting everything and I pray that the institutions who have put me on and off medicines so abruptly that caused me seizure like epidsodes. They forgot to see if the meds that I was on interfered with each other. I actually went into what they "call the name I can't recall storm" But, it makes a person feel like their skin is on fire, rocking, shaking, everything. NEVER, in my life would I wish that on my worst enemy.
Oh....I will talk about the things that have been so wrong in what has been done over the year or more.
So, who do you believe anymore? The CC doctor has factual information, enough for the leading, if not only doctor in the country to want to take me on. Because it is so rare. Then another institution that don't have their facts yet, but, have told me that it can't possibly be that.
They were only focused on one area of my body that has gone grossly wrong. The Head of GI walked in, we talked for 10 minutes and we have never met and he pronounced a diagnosis. "Chronic Abdominal pain" Putting me yet in another box. They did not care about the Immune Disease that came back so high at CC, nor the really off the chart labs for other things, nor possible cancer...nothing. It was like someone tapped me on the head with a wand after pulling a diagnosis out of a hat and declared it whatever he name he gave me. Which those records follow you everywhere.
As the saga continues, now we have the raging kidney infection undercontrol that a local ER took care of, which the Univ. failed to find and never acknowledged my pain. They called oh so non-chalantly to tell me about my kidney infection. A little too late, I am lying in an ER rocking and wanting to pull my hair out. The Univ. Hospital never said they were sorry for never listening or ignoring what I knew about my body. And here we are with yet another diagnosis that will take even more and more tests.
My mind has changed.....I am going to stop obsessing over the pain and the diagnosis(plural) and move on with my life. I don't know how you do that with extreme pain. But, I know there has to be a way to move on with whatever I have in my body. I have been in complete seclusion the last few days over everything. Too many things to talk about, to deal with.
All I can do is get up and try and put all of this out of my mind and enter the living world..with pain, or diseases or whatever the hell the doctors want to say. If I died tomorrow. I do not want to be remembered for just lying in bed for when it is time for the good Lord to take me.
I need help in getting my fighting spirit back. I pray for it. I pray that you will help me.