And It's About Time There Was Some Support For Cushing's!
My Life with Cushing's
Please forgive me if I jump a bit, but this is going back a long way, with a fuzzy memory. The first time I heard the words Cushing's Syndrome was in 1996. I was at my yearly ob-gyn checkup and had decided to my doctor about some concerns that I had. I was having migraines, which I had never had before. I was worried that at 32 I was going through menopause. I had hot flashes, mood swings, irregular periods you name it. Well, my doctor said based on family history I was too young for menopause. I knew it was time to tell her this because my husband, Gary, had noticed the mood swings that I worked so hard to hide. I was continuing to gain more weight every year, a battle I had been losing for about 10 years. I had to have my hair processed, permed or colored, just to give it any type of life. I really thought either it was menopause, or I was losing my mind.
My doctor had already checked my thyroid and any other things she could think of. She had ordered a CT scan for the migraines, which had not reveled any problems. She referred me to Dr. Katherine Wilson, a local endocrinologist. It took 6 months to get in to see her. And she really didn’t seem to think that I had Cushing's, which I knew almost nothing about at that time. I was very skilled at hiding my symptoms as far as appearances, and so I did not look like what she expected to see. She looked at an older photo and did comment that it was difficult to see my ears any longer. She scheduled lab work and a follow up appointment.
The history on file was that I had had irregular periods in the past, elevated liver functions, the beginnings of diabetes, moodiness, fatigue, and waking during the night. One of the items that really stumped her was the fact that I have severe psoriasis, which standard treatment of is to use steroids. So how could I have that and Cushing's? I had pneumonia in 1990, and mild asthma since then. Also, she noted that I no longer drank alcohol. I had to stop, because whenever I would have a drink, I would almost immediately start sweating buckets. She did acknowledge that I had numerous symptoms of Cushing's, but did not seem convinced that it was the problem.
Well, the test results pointed to “probable Cushing's”. I was referred to Doctor Wm. Young at the Mayo Clinic in Minnesota. While my husband and I were dealing with this, my father had been found to have liver cancer. It had progressed beyond most treatment. So, we kept my problems quiet for as long as we could. I was to see Dr Young in December of 1997. In October of that year, my mother passed away. It was assumed to be an aneurysm.
I went to Minnesota the first week of December. I went alone, as Gary could not get the time off at work, nor could my brother. My father was too sick to go also. Of course, the first day started with all the tests. I also met Dr. Young. He is a very good doctor, but would not say anything about possibilities without the results from the basic testing. Mayo is an amazing place. I felt like I hurried just to sit and wait. Dr. Young gave me information about Cushing's. I had not been able to find much at all about the disorder. I was eating lunch in the cafeteria and reading the information when I come across the part that this can be fatal. Talk about scared out of my wits! I had not heard this anywhere. That night I called home to check on my father and told my husband what I had learned. But if treated, it might not kill me.
The results did not say conclusively that I had Cushing's. I was finishing a collection when my husband called at 4am. I knew when I heard the phone and looked at the clock, my father had passed away. The clinic arranged for me to drop the sample off at 6am and I headed home. I was to stop the oral contraceptive that throws off many of the tests, and the clinic would set up follow up appointments with me in a few weeks. Some friends and family were worried about me being alone for the 8-hour drive, but it was very therapeutic. Gary went to help my brother with the arrangements in my absence. My stepmother didn’t wait for me to get home to help plan the funeral.
A few days later, at the visitation, as I was hearing condolences, Gary was cornered by my close friends and relatives. They wanted to know why I had been to Mayo and the results of the visit. He had to explain over and over about Cushing's. He was so supportive. I was trying to not sweat like a pig, while looking like one and standing for 3 hours straight, shaking hands and saying Thank You over and over.
Things were getting worse, fast. It seemed that my body was giving out on me when I stopped the birth control. Muscle weakness and my back was a mess. Without the hormones from the birth control, Cushing's was wrecking me. I had the extreme muscle weakness, the back problems, and more migraines everything seemed to be crashing around me. I was working in a high stress, 60 to 70+ hours a week job and could no longer keep up with my past pace any longer. When I look back at the fact that I thrived in that environment, it had to be the cortisol driving me. I lived to work. We had no children, just the two of us. We discussed children, had thought I was pregnant once, but false alarm, so no real decisions there as of yet. Every day was a battle to get through. I had constant insomnia and could not physically take a nap. I let people friends, family, everyone slip out of contact, due to embarrassment of my appearance and general state.
I was looking for any type of information on Cushing's, and there was not much out there. The best I could find was a few pages in the Harvard Guide to Women’s Health. Nothing on the web under a search for Cushing's either. I can’t tell you how awful and alone you feel, not knowing what exactly you are trying to cope with, and not finding anyone who knows much about it or any information about it.
After waiting for Mayo to call and set up my next round of appointments and not hearing anything for 5 months, I called them. My file was put in the wrong group and therefore, no follow up happening. They scheduled me to come up the next week. Gary took the time off of work this trip and went with me. And the testing began again. The results were beginning to point towards Cushing's. But the CT scans still reveled no abnormalities. They attempted an MRI on my first visit, but after being shoved into that tube 4 times, I told the tech to let me out, I couldn’t do it. Now I have never been claustrophic before, but I had my first panic attack in the women’s locker room that day. I now have them in crowds sometimes; it is another left over from the tumor. At this point, they decided I should have the petrosal sinus sampling. This procedure, if you don’t know, is to see which side of the head the tumor is on. It was an extremely long procedure! And you have no modesty afterwards either. You are exposed from the waist down to the legs. And I know that there was a shift change as well, because the tech assigned to help me and check that I was doing ok was different than the one I started with. It was interesting to watch on the monitor, until I was told to stop so they could go into the head. 8). And of course Cushies bleed and bruise so easily, they had a very difficult time stopping one of the openings from the catheters. I almost had to spend the night at the hospital. And for those of you who have this done, get a hotel room (if you are out of town) on the first floor, or one with an elevator. Stairs are a real pain after an IPSS.
Any way, I made it through and they located a tumor! I was so thrilled to find that I was sick, not crazy! That was something that Dr. Young commented about, that Cushing's patients seem to be overjoyed to be ill. But it is the battle to convince others that you are ill that makes a diagnosis a victory. So we came home over Memorial Day, as the clinic was closed anyway. When I got the phone call that I could either schedule my surgery for June 1st, or the 23rd, I said the 1st! I didn’t want to wait any longer than I had to, in case I chickened out! Anxiety was becoming a common thing in my life.
So we returned to Mayo the next week for pre op and surgery. With Dr. Young, we worked to establish a timeline and estimate how long I had the tumor. We estimate at least 13 to 15 years. I had some hair loss when I was 20, but I had also changed shampoo at the same time, so I thought that was the cause. I remember that even
as a teenager, I bruised and bleed easily. I just figured it was because I was a Klutz! At that time, I had begun the steady increase in weight also even with constantly watching what I ate, and trying to be healthy. I think I tried every weight loss plan out there, and some more than once. It was surprising how long the tumor had been there, and how long I had covered the problems up to the world.
I had transpheniodal surgery on June 1st, 1998. It seemed easier than the sinus sampling. Poor Gary, he had to sit alone and wait for the surgery results. I think he had the hardest part. They had forgotten to give him the updates on how things were progressing, so after a few hours, he finally cornered someone to find out. Then he had to make some calls to let the folks at home know how I was doing. I remember waiting to go into surgery, and one of the techs stopped to tell me he had been at my sinus sampling. I wanted to crawl under the gurney! Being the size that I was (325 lbs+) I wanted to crawl in a hole! Then I remember waking up and being so cold! So Cold!!! I hadn’t been cold in so long! And this was bitter, bone chilling cold. Gary was holding my hand and sounding so relieved to hear me complain that I was cold. He stayed for a while, and then went to eat dinner and go back to the hotel. That night was awful. I had diabetes insipidus, and had to urinate all the time. There was still a catheter is place from the surgery, first time for me. And I felt as if I could not go, so finally they removed it. But I was constantly up and down to use the potty chair. Not the most fun I have ever had, let me tell you. The next morning I was doing better and was transferred from ICU to a room. I was not as badly beaten looking as I thought I would be. I walked the halls, and worked to recover enough to be released from the hospital.
The next fun steps were to have the packing removed from my nose. It is more uncomfortable than painful, due to the pressure release. The worst is the fact that after the first one is done; they still have to do the other nostril. And the splints…. let me tell you, I have never seen my husband as amazed as when the first one was removed. His eyes looked like they could pop out of the socket! He told me that the splints were about an inch wide and about three inches long that they had removed from my nostrils. Now wonder it was so very uncomfortable. And another time of, do one and wait for the other. That done, I was released to go back to the hotel, where I slept the entire next day. I also had my first period the second day after surgery, my first in 6 months. First surgery and now this……what fun! I was a bit concerned and called Dr. Young’s office. He was actually excited and said that it was a good sign. Yeah, sure, I feel like crap, and now I have my period! I was not excited! The Friday that we were going to get to come home, I had my final check with Dr. Young. He told us that the reason the tumor never showed up on any scans, is due to the fact that the tumor had mashed my pituitary gland to the point that what they thought was the pituitary was the tumor. It was the size of a large grape! They had not removed the pituitary, with the hope that it would begin to restore itself and begin to function again. The big question we had was if I would ever be able to become pregnant, as that was something that I was asked if I planned to do, so that they would not remove the entire pituitary unless absolutely necessary. We were told that it was very doubtful that I would be able to conceive. And now that I have PCOS as a result of this, it is about 99% improbable that I could become pregnant.
Ok, so I was not in the fast lane for starting a family, but dang, tell me I can’t have it and I want it all the more! Suddenly I was crushed! And I think Gary was too, although he sure never lost it then. We then came home and I started my tapering off the steroids. This was not the best experience either. I was told that I would feel “crappy” while doing this. Well, Crappy for Cushing's is not Crappy for the general public! We feel awful; so how much worse is crappy??? I found out. I was in a hurry to get well and get my life back. At this time, I had not heard that recovery is slow, and usually most people have to alter their lives to adjust to their capabilities. I wanted “ME” back, and fast. So I decided to take this as fast as I could go. Like everything else, I was even competitive in my recovery. In September of that year, I went too far. I dropped too soon, and thought I had the worst case of flu like illness ever. Body aches and all. I had a check up the next week, so I waited it out. And I got my butt chewed out by my doctor at my checkup. She told me that I could have killed myself by doing this! Killed myself!!!!!! What the heck, all I wanted to do was to get this over and done and get my life back. I was miserable, trapped in this body that did not feel or look like mine, tired, sore, depressed, and in general, fed up with the whole situation taking so long. So, between my husband and my doctor, I followed all the instructions, and if I started to feel bad, I upped the dosage for a while, and tried again.
It took about a year to get off the steroids, and I was still irritated that I was not feeling better, doing more, and in general, who I was before all of this. I was still having hot flashes, you know, the ones were it could be freezing and you have BUCKETS of sweat running down your face. And the weight was not going anywhere either. And I still tired easily and my back was a mess. If I would lift something too heavy, or even just twist it funny, it would send waves of pain up to my neck. I was still having migraines, actually I still due, but not as frequently now. And I was still depressed. I am lucky enough to have an endo who does listen. She put me on anti -depressants, and they do seem to help. I can go for a while without them, but not for more than a week or so.
We had started to pursue adoption, another long process. And it had numerous ups and downs. And at this point, we were looking to move back to Decatur, to be closer to our families. I think in case this ever came back, Gary didn’t want to be far from some help and support. I didn’t either. I was not too upset to move back. And I had been thinking of a career change too. I was tired of selling my life for a paycheck. I had no off time, as I was on call and if my boss was out of town, I had the cell phone and beeper for the district as well. I had missed the promotion that would have been mine, because I was recuperating and the powers that be didn’t think I was up to the task. And nothing seemed to be on the horizon anytime soon. I was to be promoted into the spot of my district manager, as they wanted him to move to a bigger area, but his wife didn’t want to go. So I felt like I was at a dead end. And if we were going to start a family, there was no way to do this with both of us working retail manager hours.
To make a long story short, we were about to give up on the adoption as it had been over a year and still no real progress. We had heard about children, and actually met 2 sisters that were choosing between us and another family that didn’t work out either. I can only guess that God wanted me to go to the absolute lowest point possible to appreciate the great gift I was going to receive. My son, Christopher! I was at my desk at work, when my husband called and told me to call the caseworker; she had a placement for us. So I called. Ann told me about a 7-day-old little boy, and all the background of prenatal care, and birthparents, and then asked if we were interested. Well they have to disclose everything they have, which is overwhelming…as to the effects it has on the child. I couldn’t reach my closest friend and support, so I called the next person I could even talk to about this, my sister in law. I told her all the details, and asked what she thought. She told me flat out to call that woman back and tell her yes, we want him. So I did! Then I spent about a half hour, sitting at my desk with tears, before I even got up the nerve to ask my supervisor if I could talk to her in private. She was jumping up and down, practically screaming for me when I told her. I know the people in my department though I had been fired, because we came out and went to Human Resources. And I was still crying, not bawling, but just constant tears….
That was on a Thursday, Feb 1st. we picked Christopher up at the agency on the 3rd and the adoption was finalized September 2001. So now, I am working on getting stronger and losing the weight, and have pursued solutions for my severe psoriasis so that I can be the best mom I can. I am still not the person I was 15 years ago, and I still mourn that loss, but I am trying to rebuild with what I have left, accept who I have become, and put the experience to use in some way. Nothing happens without a plan, we just don’t always get to know what the plan is. And as for the saying that whatever doesn’t kill you makes you stronger. Well, every person going through an experience like Cushing's and living to tell about it, they have got to be the strongest people in the whole world. Because it is a daily battle, and just because they say I am “cured” due to my steroid levels, there is no real "cure", as we all know these tumors can reoccur over and over.
And to think, I had not really met another person with Cushing's until 2000. I had gotten an email from a woman in St. Louis, MO and we had been corresponding. I had come across some message boards from Cushing's, and was reading a lot and posting a little. I still do that on the Cushing's-Support boards too. Then someone writing a book about Cushing's contacted me and they want to have me fill out a questionnaire and have permission to use some of the postings I had made in the past on the message board. WOW, someone actually interested in what I had to say. This was so exciting…to be involved in something that could be useful to others dealing with the illness and looking for answers, or support, or to find that they are not alone, so I said sure! Next thing I know, I am going to Missouri to meet some of the people I had been corresponding with. And now, I am involved in a wonderful organization that is working to let people know about this awful illness and how to catch it before it goes so far that you just can’t recover your life back afterwards. I don’t know as much about all the aspects of Cushing's as I would like, and that my memory will even store these days. But if we make a difference for others and can prevent some of the suffering that they might have otherwise had, well then it is not be for nothing that we lived to tell our tales.
And life goes on……………………………
