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| Today is ...and it's about time there was some support for Cushing's! | ||
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Deb's Story...
Hi everyone, Here is how I got here, in 1992 I found a tumor in my left breast it was found to be benign and was removed. Around the same time the problems I had with my menstrual cycle since I was 17 began to resurface and I went to a gynecologist. I was told it was endometriosis even though it wasn't text book that was what it had to be .I was told I had a hormone problem and had to be careful with hormones thus making endometriosis treatment more difficult and the tumor was hormone related. We know now it was not. I was put on a low dose of birth control pill and took them for 6 months off for 6 months which of course made sexual relations more difficult especially in a marriage where I was not ready for children. In 1997 I was in a car accident and hurt my back it took 6 months to heal which should have taken a couple weeks and no doctor could explain it. I was shuffled from doctor to doctor to chiropractor to physical therapist. I was told it was in my head and no way my back still hurt that much after 6-8 months of physical therapy and chiropractic treatment. To top it all off I was being treated by one of the top spine surgeons in the world. The back never healed and only stopped hurting since my current surgery. After a divorce in which my counselor told me I was just depressed and all my illnesses were in my head (she was all for the loser ex-hubby. As I was not depressed and I had real pain) I pretty much resigned myself to living with pain until I moved to Austin in the spring of 2000. By July I was allergic to everything and was a human guinea pig for every allergy medicine on the market. I had never had allergy problems except for ragweed which bothered me about 4 weeks of the year. Now I have allergies 40+ weeks a year. The only relief coming in late January after “cedar fever” passes and in late march the molds and oak and elm start. I went to New Orleans for new years 2000 and unbeknownst to me there was a flu epidemic. A few days later my new hubby and I went to see a concert at a club that used dry ice to make steam. I started to feel bad and we got talked into going to a friends house afterwards. I started to feel like I had bad heartburn so we went home. A few hours later I was in the emergency room with blue toes, a 104 temp, and couldn’t breathe. I was told I had pneumonia. Then I was told I had bronchitis. Then I was told I had a mono type virus but it wasn't mono. This began a series of visits to the rheumatologist, the pulmonologist, and my pcp. I have been tested for every disease or condition known to man and everything came back negative. I was sick and couldn't get out of bed for 4 months. Once again I was told it had to be in my head and I must just have allergies and allergy/panic induced asthma. I was put on asthma and allergy medicine and told to go back to work. I have been 5'3 and a 100 pounds for 15 years up to this point. This is where I began to gain weight rapidly. Once again I was frustrated and spent the next 2 years on these steroidal meds. In January of this year my back started to hurt again. And I was gaining weight like there was no tomorrow. Again the docs said I had a bad diet and my metabolism was slowing down. I had acne, my hair was falling out, my face was puffy like a balloon. My once pretty face looked terrible. If you mentioned the word cold I got one. I stopped being able to sleep. I was breaking out on my shoulders and back, my nails got ridges, and everything and everyone set me off emotionally. I had asthma attacks for no reason and fevers. I'm a huge football fan and during the NFL playoffs my good friend and I were watching the games on a Sunday afternoon. I got pain in my back like I had never had. She's a masseuse and tried to work it out to no avail. That nite I ended up in the emergency room and saw an idiot doctor who told me oh it must be a muscle spasm. Go home take a valium and see a chiropractor. I told him I'd always been an athlete and this was no muscle spasm. He refused to listen and sent me home. Off to the chiro, who couldn't make it work. So off to my pcp again. He couldn't figure it out and sent me to a neurologist who took x-rays which revealed a broken rib, three herniated disks, and a tumor in my adrenal gland. He told me I had to have fallen to break a rib that ribs don't break on their own. He also told me that the tumor would be monitored by an endo who would watch it every 6 months and referred me to my endo. He would not get me an emergency appt telling me the tumor was benign and not an emergency so I had to writhe in pain another month. During the next month I had every x-ray under the sun and found I also had a second broken rib as well as osteoporosis. My knees and joints began to hurt but x-rays revealed nothing. We all know what was causing this, why didn't the doctors??? I was beginning to second guess myself and think maybe I was crazy. I would fall alot for no reason which would cause bruises that didn't heal. I was shuffled off to pain management doctors who are 2 steps away from your everyday street dealer. They liked to keep prescribing more and more pain meds. Dr feel good but not better. A month later finally I get to the endo who walks in and tells me I have Cushing's. It was about time someone had a diagnosis. I felt like the poster child with every symptom but the fatty hump. When I told my pcp what the endo thought he said no way he thought of that and I was negative. Can we say wrong. My endo and I then begin the dexamethasone testing which ends up about killing me. My joints were so bad I was wheelchair bound, couldn't breathe and was spiking fevers. I showed up in my endo's office in a wheelchair crying and was immediately admitted. The next day I had an adrenal vein sampling and my cortisol was at 625 on the left 79 on the right. A day later my adrenal was removed. Now I have a backwards sense of hot and cold, I have fevers, and excruciating joint pain. The last two weeks I'm nauseous and throw up alot (zofran is a miracle drug). I also have zero appetite. I force myself to eat once a day. We believe this is related to my crazy rollercoaster prednisone weaning. Today I had a decadron shot and we changed my prednisone levels to a very slow wean. I'm in the process of trying to get an appt at MD Anderson in Houston to have endocrinologists who work with alot of Cushing's patients and several on this board consult with me and work on the prednisone levels.
The good news is I have lost 20+ pounds in 6 weeks, my acne is
better, my back feels like its healing. Now it only hurts when the weather is
humid or wet. Hopefully soon the joint pain will subside. And I'm throwing a big
party when the right adrenal wakes up. That's my story. I'm so glad to have all
of you as a support group to learn and share. Thanks so much for having this
place you have no idea how much it means.
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