Continuation of this week in the hospital and ER

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.

Needing to get my own Doctors degree..

No one gave me the memo that in order to be a patient that you needed to have your own doctorate degree. You are responsible for knowing which medicines interact with the other. You are responsible for knowing so much about medical jargon, the unspoken rules, the way it all works. My memo got lost in the mail somewhere. for If you only knew what I have been through with hospitals, doctors, rules, diagnosis, diagnosis taken back, added on. Medicines thrown out me, taken away instantly leaving me in a state of seizure like episodes. Young fellows coming in my hospital room.... not listening to a word that I am saying. That is because the 5 very young fellows and the attending doctor are all doing different things. One is texting the entire time and his phone was ringing off the hook. He was the same guy who came down in the ER to talk to me about being admitted into the hospital. He yawned the whole time and I could clearly tell he was gone. Body was there...but, gone. Then, one is picking his nails, one is writing notes, The attendee's eyes are glassed over from lack of sleep. And he sticks the youngest fellow in front of me and tells me how long it will be before I MIGHT be able to play with my children again. She said it would be hopefully in 2 years. I almost threw up.

I asked why my kidneys were on fire. They said that everything looked clear. The day that I left the hospital, I was bent in half from pain....crying.... no, let me correct that. I was screaming from the pain and the feeling that my skin was coming off of me, fireworks in my head, rocking back and forth. The doctor comes in and tells me that is how my life is going to be for a long time until we can slowly do "bio feedback" on my bladder and colon. I must have looked at him like an exorcist. The nurses were very upset too that they did not give me any pain medicine. Because one told me that she never saw anyone in so much pain and not have any relief.

The doctors felt that any medicine of any sort would interfere with my bowels. I said I understood, but, that my kidneys and my bladder were on fire and I need help. Again, they said everything looked fine.

I was sent home writhing in pain and rocking back and forth. Begging my husband not to leave my side. Because when you are in that kind of pain...you think you might legitimatly die. Because that is exactly how I felt at that moment. I made it home and that night as I was thrashing about and having what they call "tics" where you have no control over your facial muscles or hands or arms. My husband held me tight to help me but, I couldn't stop this seizure like episode. I never went to sleep. Maybe for an hour.

The next morning (this past Saturday), I was even worse shape. I did not know that was possible. I literally was on the floor rocking back and forth in a fetal position. I started throwing up bile and blood. My husband was gone and when he called, he got my parents to take me back to the ER. One that is close by.

They said I had a RAGING kidney infection, they treated me with kindess. They listened to me and helped me. It was a small local ER. Because the pain that I was in. Yet, these large insitutions (for the exception of Cleveland Clinic) come in with 10-15 people in any given day and all come through with their scripted words. Their words where of no warmth. No one listened. How could they pass a raging kidney infection? Funny thing is....while I was in the ER the Hospital called and said "oh yea, you have a kidney infection". They could have found that out in the hospital and saved me 4 days of complete hell. I am a number in the big instution. I have much anger and bitterness that I know I have to work through. I am working with someone on that.

I have much to talk about this last week. Will write more later.