And It's About Time There Was Some Support For Cushing's!
Wow! I am so glad to have found this site. Now, I truly know I am not crazy. There are others out there
Here is my profile: 29 yr old, female, native american, 258 lbs,5'4",diagnosed May 2006, surgery July 6, currently on 13 medications daily
*some symptoms I'm sure are due to side effects to the medications I am on
OK, so you want to hear my story? Yes, I still have a story to tell.
Like all the others I'm not sure exactly when it all started. My neuro-surgeon says I could of had this microadenoma in the Pituatry gland for yrs. (He also said that a lot of the tumors are so small they usually aren't detected by a MRI ) Now that I have been reading info on Cushing's disease I can think back and relate different episodes to this disease
I was just dx May 8, 2006. For the past 5 yrs I have been to every specialists. I feel like my profile of docs is longer than my personal phone bk. Every dr wanted to put me on a pill for that symptom. I currently take 13 pills a day some even twice a day. Even w/my insurance coverage this ends up being $200/month. Then I pay $25 co-pay each time I see a dr Of course they all want to follow up on their specific prob I honestly was seeing at least one dr every other wk before being dx w/Cushing's. No one wanted to look at the "big picture "
Finally, w/me being persistant and the help of my friend and her dr friend we were getting close. They suggested I see an OB that specialized in PCOS. She immediately said that was indeed what I had, PCOS She then proceeded to treat me for that, perscribing yet another pill, extreme exercise regimen, and diet (Everything that I have already tried and failed ) In addition she also ordered a 24hr urine for Cortisol and see her bk in 4 mos Very discouraged & depressed after leaving there b/c I guess I was hoping for a majic answer. Not exercise, diet and another pill. I had diet, exercised religiously for 1 full yr and had only lost 30lbs. Gained it all back and a whole lot more. Did the 24hr urine and yes!! it came bk high. Something was wrong w/me!
Some how my Nephrologist rec'd the results before my OB (the one that ordered the test)& suggested I do the low dose dexamethasone test. My OB called and said they were working me up for Cushing's. I did the test and my Neph. referred me to and endo That was on a Weds. I think. That friday I got more ill than usual. My cousin (a nurse) stopped by after I got home from work to visit, called my mom (a retired nurse) about my situation. They tried to talk me into going to the ER. I was tired of going to the ER b/c w/all my past experiences they would just deny that anything was wrong and then I would feel crazy AGAIN. I was so miserable I gave in
This time I insisted on them keeping me until they find out what was going on. (Hint: Best way to get into to a room during busy time at ER crap your pants and vomit all over yourself-works everytime ) I told the ER dr I was being worked up for Cushing's and actually had appt w/endo on Mon I gave him the run down of my symptoms and med. list. He reviewed my lab work up & said looks to me you have Cushing's. You are very sick. Yes!!! someone finally believes me, if I wasn't so doped I would of cried. I was admitted for 3 days for Urosepsis which came from a horrible bladder infection, apparently the infection traveled to my bloodstream. I was pumped w/lots of antibiotic. Monday morning I went down for my MRI yes, they found something. Along w/my brain they found a microadenoma-small tumor on pituatry gland. How could something so small reak so much havoc on my life. I was discharged & went over for my endo consultation
She assured me that it is Cushing's we were dealing with. I love her she gave me a diagnosis & we could proceed to treat. She said that I should feel like hell. Cushing's patients are very sick people Thank you Lord!! Once again I'm not crazy She was very cautious before proceeding straight into surgery she wanted to confirm everything so we did more blood/urine work up. She wanted to make sure this was the tumor causing Cushing's & that their weren't any more. Since the rest of my body had been recently scanned, at this time she didn't feel more imaging was necessary. It took about 2-3 wks to do the additional testing and get the results. She finally confirmed that microadenoma was the culprit. She gave 2 options-Mayo Clinic in Rochester, MN-which my insurance would not cover and we can't afford traveling expenses, or find Neuro-surgeon here that can do it. I immediately went upstairs to Neuro ofc to seek appt His sec. informed me he was booked out until Aug. Using my pull as an employee there & a call from a dr friend, pleaded to get in ASAP. She took down my symptoms and proceeded to say "is that all" hold me back. "Is that all?" Isn't that enough? (Refer bk to my profile) She then said "He may not want to take this out since it is so small " I said he will take this out. I had a consult booked the following week. Anxious on setting up surgery date he could only tell me that he hadn't performed one of these surgeries in 10yrs and then proceeds to explain the biggest risk in doing this type of surgery is getting it all on the first try. Thanks for your honesty but I will go elsewhere. He then gave me a name of a Neuro at another hosp. that has lots of experience w/these. Every one seems to be on vaction this time of yr. Don't they know I'm sick. Finally got in to see this dr a wk later. By now my quality of life has really deteriorated. The illness has taken over no matter how strong I try to be I can't seem to overcome these symptoms.
I consulted w/Dr. Chicoine on 6/7/06 He really seem to sympathize w/me, but I don't think his nurse had a clue. He wanted to do the IPSS to make sure the tumor was on the right side like the MRI indicated. I was more frightened by this procedure than the actual surgery. This was set up for the following Mon. Then the dr. left & the nurse started to set up the consult w/ENT and surgery. She comes bk to tell me consult will be 7/11 and surgery TENTATIVELY set up for 7/27. I then lost it. I told her there is absolutely no way I could last that long. Every day was becoming more and more of a struggle. I couldn't work, my Family Medical Leave was running out, paid sick bank and vacation time would be gone even before I had surgery, I can't enjoy life, can't take care of my home, can't play or take of my infant daug. She said she would talk w/dr and see what they could do. Later that day she called & they were able to go w/another ENT and surgery was later confirmed for 7/6/06. Thank God, but I still wish it could of been yesterday. My FMLA has run out though and I am going to be short about 2wks pay barring in complications from surgery and recovery. The dr says I shoud be in hosp for 3-5 days and recovery is about 2 mos. I'm also fighting w/ins to cover at 100% since there really wasn't dr at my hosp who had experience in performing this type of surgery. What else do I need on my plate?
I am very anxious but nervous about the surgery. I know its all in God's hands. I pray that his plan for me is to do well during and after surgery. I pray that I no longer have any of the symptoms anymore b/c right now it is so difficult to deal w/each day. Each day I wake up thinking I will feel better today. Duh I'm not going to get any better until I have the tumor removed. Why is it we are suppose to be happy to go to heaven but yet so afraid to die. I want to enjoy my husband, my daughter, my family and friends. I want to live life
I am writing this b/c even as I am still reading through all the bios every one is unique and I can relate. It's kind of like therapy or a reality check. I hope giving my bio will answer some questions or help someone else like they have done for me. One of the hardest things I am having a time w/in dealing w/this disease is the "outsiders " They just don't seem to understand. I still feel that some of my co-workers, friends and even family don't get it or like myself need to be reminded. They think b/c i slept all day yesterday that I should be refreshed and ready to go. Nope, the next day I sleep all day again, literally. Only to get up to go to the bathroom and eat.
I am frustrated that it took all this time, energy, and money to be diagnosed. I just have to concentrate on getting cured and not look back on the past. You know your body. I kept being passed off because everything that was happening was due to my weight they say. Be persistant and you have to be your own advocate. You are not crazy
Thanks to all my family and friends for the help-monetary donations, house cleaning, listening, dealing w/my moods, cooking meals and most of all prayers. Thanks to my husband, Duane, for being there for me. After all I'm not even sure he knows the real me we have only been together for 5 yrs. He's in for a treat!