And It's About Time There Was Some Support For Cushing's!
My story would take days to write but I will try to shorten it. If anyone would like to e-mail me PLEASE do!
Since a serious car accident in early 2003, my life has not been the same. I went from being a total workaholic and one of those people who could do anything for herself, to being a dependant person in chronic pain and dealing with more doctors appointments in a few years than I had had all of my life. the very worst part? Knowing there was something very wrong with me other than the physical problems diagnosed from the car accident and having trained professionals (supposedly) making you feel like you are such a lowly piece of garbage that your existence is not even justified. Being told to your face you are OBESE and too fat and to go on a diet, you are not trying hard enough to get better, and the very best one IT IS ALL IN YOUR HEAD!
I went from being a very confident person to a person who hides in the house most of the time now. While in hospital out of province, in february of 2005, for an emergency kidney stone removal that had all infected here due to a blockage and I became septic with my white cell count quadrupling in less than 24 hours, I had to be rushed out of province
Of course in the ER I had screamed and insisted I was infected and needed cipro asap and had to have the stone removed; BUT I am not a doctor so guess I was right that time too. After 9 years of having the problems one would think the patient actually knew something but. I had had my last lithrotripsy a week before the car accident in 2003.
After I was stented, put on cipro and the infection started to clear I had to have surgery to remove the stone an intern looked at me and asked if I had ever been tested for cushings? Huh? what is that? I asked he said I had all of the classic symptoms. SO I started to research cushings and was pretty floored. That pic was me! The major weight gain, I no longer maintained muscle tone while previously I built and maintained muscle overnight, I had the famous hump, the hair growth, the bad bruising and not healing. pain all over, but I figured that was from the car accident and my many diagnosis of fibro, ripped this and torn that, whiplash, nerve damage, prolapsed discs, twisted spine, shifted hip and pelvis etc. I also had no energy at all and then would be like a gummy bear on speed for days. Pain all of the time and hot flashes! I would literally have sweat pouring off of me! Then I started to become really off with my brain function. I could not longer multi task and do 5 things at once. I couldn't concentrate or think and things like my previous work for accounting etc. just baffled me and I became more frustrated. I saw neurosurgeons, ortho surgeons, and physc.
The first MRI almost a year after the accident showed nothing. I had had thyroid testing and so many tests for the kidney problems. no one could figure out why I produced so many stones. meds didn't work to control it. Nothing was evidently broken so I was passed off time and time again. A physiatrist diagnosed me as having fibro and a very bad case of it. No treatment would be effective because my body was in such a mess. Physiotherpay ruined me for any hope of any chiro intervention etc. The physiatrist suggested I be tested for cushings as well. 2 months later I saw my first endro. He set up testing, the supression tests, bloodwork etc. I waited and waited. THEN he disappeared! I kept getting worse. My doc kept faxing his office for reports, no reply. Finally this endro was doing a clinic here in town and my doc got me in. I was no impressed and asked this endro where he had been? WHERE were my test results? etc. He became very annoyed with me and didn't want to answer any of my questions and refused to give me his new office address where he was working at a college down east telling me I was not HIS patient, he was just consulting! We had words to put it mildly with me telling him how unprofessional he was and also telling him this was MY life he was holding up for the past 8 months!
Then I asked him if I had cushings or not! Well yes, he said all of the testing shows yes, you do and my blood levels were off the board. I had already told my doc I wanted a new endro, one who actually worked and followed up on patients. I was referred to the endro group out of province. But last fall I started to have very severe sudden head pains that would knock me over. Nothing like any migraine I had ever had and after having a constant headache since the accident; this was much worse. I started falling and getting more and more "not with it" I was doing strange things like trying to cut things with a spoon. I went to my doc ASAP and he set me up for a cat scan. Then I was told I needed an enhanced MRI asap. I saw my new endro and she was a welcome change. She listened to me and treated me like a human, she didn't tell me I was OBESE or make me feel like this was my fault or that I was just lazy and useless. She said the first thing she looked for as a cause was a tumor. I was petrified. I had more specialized bloodwork done. She rushed the MRI so I only had to wait about 2 months. The MRI showed a tumor that had grown on the side of the pituatary gland and had pushed it into an upright position and into my brain. I was sent to see a neurosurgeon out of province and I was told it had to be removed asap, and that considering the size of it and also the stages of the cushings; they were shocked I had not been confined to bed extremely ill for a very long time. So my surgery was set for June 6th (2006)
we travelled out of province, my mother and her other half flew thousands of kms to be here and the next morning I went in to be admitted before 6 am and was told I had been cancelled due to an emergency during the night! They had tried to call me in ONTARIO . well they knew I was over there and had the number to the hotel and the cell number! It was suggested I stay over there for the week to see if they could work me in! No way, I was so disgusted I said no. The expense to stay over there and being on pins and needles was not in the cards. The surgeon agreed to release me and my surgery is scheduled for mid july (2006) as of now to try to remove this tumor and go from there I guess. BUT at least now I have a reason for some of the problems. Yes, technically it was all IN MY HEAD!
My advice to any of you don't give up on the fight. Insist, persist, scream, insult do whatever you have to do to fight for testing and answers. If you don't you will continue to go downhill and get worse. Sooner or later a good understanding doc will come along where you are not just a number but rather a human being.