And It's About Time There Was Some Support For Cushing's!
I am 39 year-old single female that livens in Lexington South Carolina. I just moved here from Cleveland, Ohio a little over a year ago. My story is rather extensive but I will do my best to stay on topic and not totally confuse you. I was born in Titusville, Florida and raised in Vero Beach, FL until I left to go to school to Oral Roberts University in Tulsa OK. Before I go any further, I need to back up and explain a little physical history.
When I was 12 years-old, I was diagnosed with an very rare hip disorder called, Slipped Capital Femoral Epythesis. I also at this time developed JRA: Juvenile Rheumatoid Arthritis. I have had over 50 surgeries since I was 12 years old to the presnt. My first hip replacement was at 19 and I was the youngest person at that time (1989) to have the new uncemented version implanted. And here 19 years later the stem (the part that is hammered into the femur - has never been revised). I have had ball and cup revisions but on the all the hip is still maintaining aft 19 years - and that is amazing when you think that before the non-cemented ones came out the life of a hip replacement was 8-10 years....so I am making medical history!
During my college years and early twenties, I continued to have arthritic sysems and orthorpedic surgeries from left hip revisions to my first knee replacement in Tulsa OK in 1996. That knee replacement never really took well. I had many, many revisions of that knee in the first 6 years. I had a real problem with building up scar tissue so fast that they could not get me in to the PCA quick enough to keep the knee from eventually freezing up. After several attempts of trying to 'break' the scar tissue up while under anesthesia, they had to stop due to fear of actually breaking the femur. It always would up with yet another knee revision. I believe I had 7 revisions in the first 5 years.
In 1993, I had was diagnosed with an overlap of SLE "Systemic Lupus" with my JRA. I had a severe episode of where the lupus attacked my spinal cord and I had no feeling from just above the knees down in both legs. I was admitted to the local hospital and put in a severe rigid regime of high, high dose of steriods through the IV ever 4 hours. I entered the hospital at 130 pounds and 2 and 1/2 weeks later I was released at 250 pounds. I didn't even recognize the person in the mirror. With the arthristis and fibromylgia pain, the weight gain only made mobility all that much more difficult. I was dependent on a motored scooter for mobility. Once released frothe hospital with full feeling in my legs returned, I was still on a steriodal dose by mouth for months to come. It seems i gained weight no matter who little or how much I ate. And that was frustrating the the beginning of my weight battles. I have never been able to return to my college size 6 - 120 pounds.
In 1997, from all the steriod use, my right hip - the one hip I always called my 'good hip' because causing me great pain. Upon x-ray examination and a bone a scan it was determined that the head of my femur had osteonecrosis. Meaning the bone was dying from lack of blood flow from the high doses of sterioids that I have been prescribed over the years by doctors to fight anything from an astham attack to it being a treatment for the lupus. Usually with osteonecrosis they replace the joint, but the doctor that I was under at that time Dr. Livingson of Tulsa OK (out side of Dr. Lazaurs of Port St. Lucie, FL who was my very, very first doctor to treat me for the initial hip broblem) anyway Dr. Livington is an amazing doctor and he was to try a procedure that was not very well know. it was called a fibular bone graft to the hip. It is where they take the middle portion of the filbula (the smaller bone in the lower leg) and all the veins and arteries and they graft them into the head of my femur. They drilled a hole in the head of my femur and hammered the piece of the fibula into the head of the femur and hooked up the arteries and veins that were going to feed the new bone graft the blood it need to survive. Needless to say, it was a 13 hour surgeries, they could guarantee nothing, but to this day my right hip is the most pain free joint I have and all the x-rays show that that surgery saved my hip - to me it was a miracle.
In 2000, I moved back to Florida to be close to my family. In the first 2 weeks there, during the middle of the night, I must have falled out of bed and I broke my angle. Wound up in the hospital yet once again facing surgery to put pins in to maintain stability. By now my surgery were numbering in the late 30's.....with all I've been through ti is hard to keep count.
On July 19, 2003, I was employeed by the Press Journal as a Newspaper carrier and during the end of my route on July 19, I feel asleep at the wheel and hit a tree head on . My right foot my crushed underneath the brake pedal, my right knee was gashed open on the radio knob, by head hit the windshield and my forehead looked like road rash. In the emergency room the doctors said they had never seen an ankle that badly injured and gave me no gaurantees abou what was going to happen to this ankle. I was sent directly to surgery to try and piece the talus bone back together as well as the could. Since the ankle had ben so severely dislocated during the accident they had to sue pins and rods, and plates to hold eveything in place.
The next day after the accident, my body felt as though I had been throw up against a brick wall a few hundred times....I never want to experience that again. My ankle even though it was in a cast to keep it stable was still dislocating in the cast. The must have taken be back to surgery 3 times putting it back in place and then they decided to put a rod throug the bottom of my heal all the way up through my tibula to just below my knee to keep it in place. It was pretty weird when they took off the cast to change it and my foot laid on the table with a rod sticking out of my heal at least 4-5 inches...needless to say, I got a lot of doubt takes from people.I was in a wheelchair with NO WEIGHT BEARING on that right ankle for a year. The rod stayed in for 9 months. Once I was ready to begin walking, they ordered me a AFLO. It helped provide stability but that ankle was still very, very painful. Pain like I have never experience.
I went to visit a college friend in Cleveland, OH in the spring of 2004. While I was there I spiked a fever and had to go to the hospital. They determined from x-rays that I hd developed osteomalytis which is the most severe form of bone infection. So I knee going back to Florida after my vacation to Ohio that I would facing amputation just not sure how or where this was all going down.
My friend from Cleveland invited me to come to Clevenad and be evaluated by the Cleveland Clinic since it was like the Mayo Clinic in these area. So on faith, I packed up my apartments, gave away what I didn't take with me and within a 1 of having returned from Cleveland was back on a plane to move in with my college roommate and her husband. They were invaluable to me....they helped take care of me until I as was able to be on my own. My weight still continue to be an issue and fatigue was so overwhelming.
In June 2004, I have my 1st of 2 amputations on my right leg. My right leg had a knee replacement to begin with so they weren't sure how the knee replacement would hold up with a prosthesis. I did pretty good for about the 1st year, but then my right knee replacement began giving great pain and MRI and x-rays revealed parts of the joints had loosed and infection had set in. Doing a revision of a amputated limb was out of the question - it wouldn't have been rehabable. So the only other option was to do an above the knee ampuatation which was performed on Feb. 2005. A month later while recuperating, my wound was infected with a staff aureous and I was hospitalized the next day to wash out the joint and put on a pic line of antiobioics for 3 months.
The plan was to work towards learning to use an above the knee prosthesis, but it was a struggle for me and I have opted for using the wheelchair. It seemed that I was gaining weight for no reason even though I had no appetite or really didn't want to eat. I would go days without eating, but go back to the doctors to have only gained 10-15 pounds it was very discouraginjg. I was also struggling with sleeping. I dreaded nights and it was hard for me to go to sleep. It seemed like woke up so often and would just get up and go to the bathroom because I thought that was what woke me....but often times I would sit there and try and pee and only little spurts would come out. No matter how many hours I slept, I aways would wake up exhausted. I would find myself falling asleep at the most ackward times....and my car accident was one of those times I feel asleep when i shouldn't have and now I am paying for it.
During 2006, I worked at my church and was active, but I so was overwhelmed with fatigue and having no energy at all. I mean all I wanted to do was lay in my bed and watch TV or read.....falling in and out of asleep while I read or watched TV. I have no energy to do anything. Oh I so wanted to go out with my friend, but it took just great, great effort on my part especially since I was wheelchair bound. It took double the energy of a normal person. Emotionally it made me feel like I was the laziest person on the earth, I edidn't understand because in my heart I wanted to be out and about and doing something for me life. Anyone who truly knows me will tell you, "she is a self-starter and over eager to help where needed" that is why what I was feeling didn't line up with what I wanted to do and that was so frustrating. I could sleep for a whole day, but yet wake and feel like I had never even slept.
On Janaru1, 2007, I moved to South Carolina to begin a new job that fell through once I got here. Well, thank goodness I have family and friends here already, because that was the hardest season of my life. I knew something was wrong with me physically but I couldn't put my finger on it My period stopped completey for 8 months and for me that is so wrong, because I have been like clock-worth since my period started on my 13th birthday, April 9, 1983. Now don't take me wrong here...I enjoyed the vacation from my period!!! But it was definitely a sign something was wrong. The fatigue kept gettting more and more overwhelming to the point of I had trouble just getting my face off the pillow and getting myself dressed. Often times, I would find a reason why just didn't need to go and would stay home in the bed reading or watching TV. There were occassions where I would have to rise to the occassion so to speak....and one of those was I hated a dirity apartment so I made myself keep my place clean and laundry done. But didn't have an appetitte and eating was a chore.....I just don't like eating. I sometimes go 2-3 without eating (I always keeps fluids in me) but then when I would go back to the doctors, I would have gained 30 pounds - and i would think, "that's impossible!" Dr. Korman took some blood work to rule out Lupus and check my SED rates. Amazaing, my ana counts were negative so my lupus continued to be in what the doctors called remission.
Since I moved her in the beginning of 2007, I have put on almost 100 pounds and it seems so impossible to me and those around me. One night I was watching on the Discovery Channel Series "Mystery Diagnosis". These are stories about people that go undiagnosed for various reasons, but suffering silently while trying to find out what is wrong with their bodies. This one particular evening this lady told her story and the whole time she was telling her story and her symptoms, I thought that she was telling my story verbatium. I had all the signs and symptoms that she had. And the diseases that the finally were able to diagnose her with was Cusings Disease. After watching that program, I felt the first form of hope in a lone time. I called my doctor the next morning and told him I needed to come and see him today and that i would even take the last appointment and wait as long as i need to...that I wanted to see him TODAY.
I went that day, papers in hand that I had printed off the computer on Cushings Disease, handed him those papers and told him the story about the show I had watched and said, "This is what I have and i want to be treated so i can feel better." He said that this was on of the next things he wanted to pursue with me too. So he took some blood work and told me they would call me to come in when the results come in. The results were negative and I told the doctors that can't be...the has to be something else another test. He said sometimes the tests come back negative and you take them again in 2 months and they will be positive. So he took a different test that day as well as some other panels. They called me back in the office 3 days laters and said your cortisol test is negative, but that my thyroid levels were off and were off way bad. He said I have , "Hypothyroidism" and prescribed me some Synthyroid to take once a day. And the doctor said I should begin to feel better in a few weeks. That it takes time for the medicine to build up in my system. Well, it did give me a little hope, but something inside me knew this wasn't all that was wrong with me. But because the cortisol test was negative and the thyroid was positive, the doctor dismissed Cushings and didn't order any additional tests.
Even though I had been taking the pills for 3-4, I was not feeling any better and still feeling totally exhausted. So Dr. Korman sent me to Dr. Ghant for a sleep study. Dr. Ghant told me at the start of the appointment, "Suzanne, I read your history and the meds your taking and everything and I had decided based on your history and the fact that you are on so many drugs that cause sleepiness and fatigue that there is no way you could have sleep apnea. But upon seeing you get out of the car and doing my examination, I feel differently about you and it would not surprise me that you would have a sleeping disorder of some kind.
They did a split-sleep study with me so that I wouldn't have to come back the nex night. The results of the sleep study even surprised me. I do have sleep apnea and i do snore. During the 2 1/2 hours of sleep that they monitor me I had over 140 sleep apena events.....that is very high. Another thing they found out is the I take in air fairly well, but don't exhale very well.....which means my CO2 levels are very high in my system when I sleep. When you hear of a person that just simply dies 'peacefully' in their sleep and nobody knows why? Well it is because their CO2 levels got high and put them to sleep permanently. So that was a bit concerning, but hopeful that the CPAP machine will help make these adjustments.
My first night with the CPAP proved to me that it serves a purpose and in time as I adjust to sleeping with it properly, it is going to make a hugh difference. That first night I went to be and I slept 8 hours non-stop. I never woke up to go to the bathroom a zillion times like I used to do and when I awoke, I felt like a brand new person! I thought I had just experienced a miracle....probably was.
When Dr. Ghant was doing his original examination on my before the sleep study he told me a few things that were very very important: 1. I have very large tonsils that obstruct my breathing when I lie down. 2. He told me that he thought that I had other issues other than Sleep Apnea or a sleep disorder. 3. He asked me if I had every heard of Cushings Diease?? I then proceeded to tell him the whole story with Dr. Korman and his diagnosis of Hypothyroidim.. He asked what tests Dr. Korman had done to rule out Cushings and I told him he took 2 blood tests. Dr. Ghant was very, very surprised and concerned that Dr. Korman didn't do a Cortisol 24 - hour urine test. He said that that would be one of the first things he would recommend to Dr. Korman outside of the findings fo the sleep disorder.
Over this past weekend, I took my "collections" for the 24 hour urine and dropped my deposit off at Dr. Korman's office Monday, January 28, 2008. They said i should expect to receive the result in 2-3 which would Wednesday or Thursday.....so i am in anticipation. The hardest part of this whole process is knowing that you know that something is so very wrong and who don't know what it is or how to fix it. When you don't feel good and you don't know how to make yourself feel better that is the true definition of torture in my opinion.
Yes it has been a very, very , very long haul for me physically in my young 38 years and what is it that keeps me going on and on despite everything can be nothing short of a divine intervention. Don't get me wrong...I do have my days where I wish that I could just go to sleep and stay there in the pain free environment. But I guess God just isn't finished with me and I have to hang on to the fact that He is in control and knows me better than I know myself. I pray everyday for the Lord to send people my way so that I can have friends to help be a support to me. Like I said in the beginning, I am a 38 year-old single who lives alone. I would love to have friends that I could encourage and that they could encourage me when I am done.
I must admit that I am nervous about the 24 urine test results. Part of me is scared it is going to not be positive and I won't be able to treat me and get better. The other part of me is scare it will be positive. I guess if you all have been through it too......you totally understand the inner war going on right now.
Thanks so much for listening....I don't think I have ever sat down and written my whole medical history because as you can see, it is quite extensive and long. But I hope ya'll don't mind me getting it all out!
Thanks to my new friends, Suzanne
During the time that I am waiting for my results, I would appreciate any words of encouragement or ideas your might have for me. Or if you just want to become email pen pails, I sure would appreciate and would welcome it.
