And It's About Time There Was Some Support For Cushing's!
My name is Sue AKA SuziQ and Sue Ann. I've been married to this wonderful man, Donald since 1964. We have three adult children and seven wonderful grandchildren. My husband is a blue-collar worker for Federal Mogul and I am currently a warranty administrator for a small Lincoln Mercury dealer. We are located in Jackson, Michigan…
I'm a Cushing's Syndrome survivor and I'd like to share my story with you…
I had an adrenalectomy on October 5, 2000. My left adrenal gland and tumor were removed. The surgery I had was the Retroperitoneal Surgical Technique, which is a flank incision, where the surgeon removed my rib and then the tumor and gland. There were complications with the tissue and it took my surgeon almost four hours to repair the damaged tissue before he was finished with the surgery. My tissue, it just shredded as he touched it, kind of like wet tissues. The years of excess Cortisol were responsible. Pre op my body was producing 260mg. Cortisol daily, a small number compared to so many others, but a great deal more than normal.
At that time I had a high stress position, working 60/70 hours a week. Also, my mother had battled cancer for 8 years and we were nearing the end for her. 1990 was a mixed year for me emotionally and physically. I'd been plagued with back problems for many years and it worsened. After x-rays, my doctor told me that I had a degenerative bone disease and that I would end up crippled and in a wheelchair. My daughter got married, my first two grandchildren were born, and my mother had to give up driving. So every night after work I stopped to check on her and do whatever she needed me to do. At the same time my other mom (Don's mother) was having daily radiation at University of Michigan for cancer. It was a hectic time for Don and me and the stress we lived with was horrid.
In April 1991, after a four-week stay in the hospital, my mother's time here was about over. Yet still she clung to life. I finally had to tell her that I would be all right and it was ok for her to go be with the Lord. She smiled at me and was gone. That was the hardest thing I've ever done. By then I'd had several personality changes and had developed age spots and psoriasis. I'd been through so much that I believed all my problems were because of the traumatic life I was living.
My mother had not been gone a month before we were faced with the same problems with my other mom. By this time the smiling happy person I'd always been was gone and in her place was this tense, irritable, quick-tempered stranger. I loved my job, but in late summer 1991 I walked. My employer started screaming at me. No one had ever talked to me like that so I just picked up my purse and keys and walked out the door. That was not I. I didn't do things like that. Yet, that's exactly what I did. I went home and slept round the clock for three days. The night sweats, hot flashes and flushing started and because I was 45 I knew it was menopause. I started to gain weight. So, OK. It's my age and menopause. These things were suppose to happen in my mid 40s.
Don's mother died in February 1992 and was followed by Don's brother in April. Four days shy of a year and we'd lost three very important people in our lives. Because my father-in-law had had a severe stroke several years earlier we had to handle his finances and very soon I had to add my grandmother's finances to the list. It was not easy taking care of all these people year after year.
We had moved from a huge home into my mother's tiny house. I sat down with pencil and paper and drew an addition and we tripled the size of the house. At night I was so tired that I'd fall into bed and would sleep soundly. During the day, when not busy, I'd find myself sitting in a stupor, with my mind blank. I became quiet and depressed. All of a sudden I was shopping compulsively. I had to have large quantities of the things I bought…but I never used them. I'd have to have dozens of things, all the same size, brand, color, etc. I never used anything I bought, but you never knew when I might need them. Something else happened around this time. I started choking. I'd choke on food and beverage. There were times when I thought I'd choke to death. It really scared me.
In 1994 I answered a blind ad for a stress free job. You can't deceive knowledgeable people and within two weeks I was doing accounting and in a few months was sent to school to learn how to do automotive warranties. I loved my job. I had purpose again. I was happy. Then I gained more weight and became quite a contradiction. I became 'driven' to itemize everything I owned. I'd spend hours making lists. At the same time I'd throw my bills in a drawer and forget about them. I'd clean the sinks daily, yet my room had 3" of dust on the dressers. I started shopping again. Don had so many work clothes that I could have gone a month without doing the laundry, yet I did laundry every other day. So why did he need all those clothes?
In 1997 I fell at work and injured my knee. It took 4 months to heal. Nights sweats and flushing got worse. I began to drip with sweat. I lost control of my thoughts. Periods were erratic. Menopause. My skin dried out and flaked. I'd get itchy scaly spots on my arms. If I scratched them, they would turn red and bruise. My feet came out from under me one day and I flew across the driveway, landing on my stomach. It took two months for the bruises to heal. My periods stopped. Ah, ha. I'm done with menopause. Gained more weight and changed sizes again.
My back started to bother me again in June 1998. Next my shoulder froze and I couldn't use my right arm. Added an aching neck to my complaints. My beautiful head of hair was thinning. And I asked the doctor if anything that I took would cause my hair to fall out. No, nothing. Eventually I couldn't stand up straight, so my doctor sent me for therapy for my back. The therapist could help me gain use in my arm so therapy was added for that. And they gave me therapy on the neck also. Within six months I had most of the use back in my arm, my back was better, but not my neck. It ached all the time, no matter what I did. Headaches became a daily thing. I hadn't had headaches like this in years. I got skin tags on my neck and they irritated me as the seat belt rubbed on them. Actually that is how I noticed them. Looking at them in the mirror, I discovered my double chin. Carpal tunnel was added to my list of complaints. My hand and wrists throbbed constantly. Then I started to get the shakes. I was falling apart.
Look out 1999, here I come!! Slipped and fell on the ice and slid under my car, which was running. The exhaust was in my face and I couldn't move. It was 15 minutes before someone came to help me up. I'd landed on my left elbow and I swore it was broke, as I couldn't use my arm. It was x-rayed three times because of the shooting pains that lasted over a year. And I had an asthma attack to outdo all the attacks I'd ever had.
My face and right side had been going numb since fall, so in the spring I mentioned it to my doctor and he ordered a brain scan. Checked out ok.
Vision problems were next. The eye doctor found very little change. By then I wasn't sleeping and was suffering from anxiety. The doctor gave me Paxil and just kept increasing the dose as I kept getting worse and worse. I had a hair that kept growing on my throat. One day I got tweezers to remove it. While looking in the mirror I noticed that I now had three chins. How gross! Somehow I had to get this weight under control. My rib cage ached constantly and I decided it was nerves. It felt the same as when I'd had a nervous breakdown many years before. I remembered the feeling of hopelessness…so…that's what it had to be.
Over the years I'd slept less and less. At one time I'd sleep six hours a night, but by the summer of 1999 I was sleeping two hours a night, every night. Don and I went on vacation at the beginning of summer and when we got back, part of my world fell apart. My son and his wife were heavily involved with 'crack' and their situation worsened as the summer passed. I learned of the horrors they were living and forcing my grandchildren to live from my other son. I never heard from them and had no idea where they were or how my grandchildren were. I knew that I was very unhappy. And during this time, I lost 30 pounds.
At Halloween, I saw my grandchildren for the first time in months and I cried. Two weeks later, I heard about an attempted robbery and when the radio announcer told what had happened…I knew that it was my son and his wife. They were caught and arrested. When I saw Jeffrey for the first time in months, he was emancipated. And I cried. I love him. He is my son. Stress? You bet! Anxiety! Without a doubt!
It's 2000. I had two accidents where I fell frontward and hurt myself. My daughter thought it was strange, as people don't fall frontward. Well, I did. Not only that, but the bleeding wouldn't stop. Whenever I'd cut myself, even a tiny cut, it would bleed and bleed and bleed. Bruises? Now they were all over me and they just didn't heal. And I didn't even know how I got them! If I so much as touched my face, where I'd touch myself…blood vessels would come to the surface and they wouldn't disappear for days. I developed skin ulcers and my wrist area would have three or four all the time. One would heal, and another would take its place. My head was sweating worse and water would drip on my desk. It was embarrassing. Now I was napping every day around 11AM for 15 minutes. I'd just zone out. I couldn't connect two thoughts. I couldn't remember what I was doing. And the weight, it was so bad that I couldn't sit for more than 15/20 minutes at a time. If I had to get in a lower file drawer, I couldn't get up. I could barely walk up the front steps at home each night. And my breathing was so bad that I felt like I was having a constant asthma attack. Stress? You bet! Anxiety? Without a doubt!
I really believed that stress and anxiety were the cause of all my problems. I was worried over my son and his family, I was stressed, I suffered from anxiety and I overlooked all other symptoms. I had enough to worry about. I was assured that the bleeding was not caused by medication - just like when I'd asked about my hair loss. So, I was ok. Gained a lot of weight and couldn't lose it, but it would go away eventually. After all, I'd lost 30 pounds just a few months prior.
In June I was in an accident. My reflexes had slowed down plus I was having a hard time concentrating on things, including driving. I'd get confused. Sometimes I'd get to work or home and not even remember how I drove there. I would try very hard to concentrate on what I was doing. Sometimes it worked and sometimes it didn't. After that accident I almost had a couple other ones. I got scared, but couldn't figure out why this was happening. Also in June, my voice changed. I felt choked all the time, like a vice was around my neck. I started holding my side as it ached constantly, like something was pushing against my ribs.
One afternoon I took a nap and when I woke up my stomach peaked like a tent. On Monday I called and saw the nurse practitioner. She sent me to a surgeon for a hernia. The surgeon didn't believe I had a hernia, but ordered a CT scan anyhow. As Donald and I walked out of his office I was so excited because I wasn't going to have surgery. I didn't have a hernia. Hurray!! I was scared of surgery.
Within two days the surgeon had scheduled me with a gynecologist and an endocrinologist as the CT showed a cyst on ovary and an adenoma tumor on adrenal gland. He had also scheduled me for an ultrasound and MRI for these other physicians.
So I had the ultrasound and the MRI. The endocrinologist's office called me and scheduled a 24-hour urine test and a blood test for me before my appointment with him. They wanted that done prior to visiting him. I could handle that. 24 Hours…try Saturday, no big deal. By now I was a little upset, because it looked like surgery was the only option. But I was still optimistic. Well, fine, zip out the cyst and tumor. I'd be fine. Well, a cyst the size of an orange was the size of a grapefruit by the time I saw Dr. Farhat. He scheduled a complete hysterectomy, with the intention of removing the ovary and cyst only. OK. So, six weeks off work and then back-no big deal. I go to see Dr. Halsey next. Spent over an hour with him. Thought, great, he's thorough. This is good. I had filled out this 3-page questionnaire prior to visiting him. He studied it. He made notes. Then he asked questions. How long have you had the moon face? Moon face? I just thought it was because of the weight gain. What about the hump on the back? What hump? I have a hump? Never paid attention. And the weight gain. It's all in the abdomen. Sure. Thought that was odd, but I've always been different. How about the bruising and sores? Well, didn't think about it a lot. Did have blood checked for bleeding. And I've always bruised relatively easy. Red face? Odd, yes, but didn't think a lot about it. If I rub it the blood vessels break and bleed. That was because the blood was right under the surface. That's why I bled so easily and bruised so easily. Well, he told me he believed I had Cushings Syndrome and ordered the 4 day Dexamethasone Suppression Test The tests, of course, had to be delayed, as I had had a shot of cortisone two days prior for an asthma attack and that had to be out of my system. In order to do the tests and for the results to be in when he saw me again, my appointment had to be a month away. Whew!! Cure? Oh, remove the tumor and adrenal gland. OK. So two surgeries. I bopped out of his office. No big deal. Two surgeries. Ah…. Wonderful, wonderful computers and Internet services. Cushings? Of course, the first things I find are Cushings and dogs. Dogs? Well, look further. By the time I finished printing everything I could find on Cushings it was almost bedtime and I was scared to death.
In the meantime, my son and daughter-in-law were sentenced for the attempted robbery. Don and I had temporary guardianship of their three small children. And I truly don't know what I'd have done without my daughter's help. I kept getting worse and worse and it was not easy with the three little ones. My son received three years probation and an order to participate in Foote Steps Program (a 90 day in house drug treatment). My daughter-in-law was sentenced to a 30-day drug rehab. She walked off her program after two weeks and disappeared for another two weeks. She was subsequently sentenced to a women's prison for 18 months to 15 years.
I went to hospital for the hysterectomy, but surgery couldn't be done as I had developed a respiratory infection. Spent every day the next week at the doctor's office. Then I went back to work, sicker than ever. Finally I went to see Dr. Halsey again. The results of my tests showed that I was ACTH Independent and needed adrenal surgery. An appointment was scheduled at U of M with a surgeon. Dr. Farhat removed left ovary and cyst, by now the size of a small melon. The uterus and other ovary were ok so he left them. Four days later we went to U of M to see the surgeon. He was more concerned with why my GP and myself had not discovered what was wrong with me than with scheduling a surgery for me. He insisted I had to have striate and I told him I didn't. He had to look and see, as he didn't believe me. He would not schedule a surgery until he had my film. I told him he would have it the next day. He also told me that I was critical and it was imperative that surgery be done right away. So..ok..Why didn't he schedule it? Because he didn't have my film. It was on his secretary's desk the next morning by 9:00AM as we hand delivered it.
Two days later I had to see my GP. He asked about my trip to U of M. I told him everything and he got angry. I had been sent to this doctor with a diagnosis and what needed to be done. What difference did it make who discovered what? He asked me if I would use a different surgeon if he could find me one. I needed the operation NOW. Also, I should mention something that was very important about my health and Cushings. First of all, my GP had retired after selling his practice to the one I have now. My current GP would not have a clue as to how I looked before Cushings as he'd only been my doctor for three years. And, I lost 30 pounds in 1999. People with Cushings DO NOT lose weight. But I did. And that alone would make a physician rule out Cushings.
We met the next day with Dr. Casey. This surgeon had never operated on a Cushings patient, but he knew about Cushings. He knew what he had to do. We walked out of the hospital, confident that this surgeon was going to cure me of that wicked, wicked disease. My surgery was scheduled for the following Thursday. Time was of the essence. I called U of M to have my film sent back to Foote Hospital. The film was still on the secretary's desk-two days later. Surgery needed to be done right away, yet my film had not been looked at yet. Goes to show… The Tuesday before surgery I almost died. Spent the evening at the emergency room where I was given excellent care. Thursday October 5th was surgery………..
Ah, recovery. An interesting event. It lasts anywhere from two months until two years, or more. All patients are different and all endocrinologists are different. Do not use any one person's recovery process as gospel, only as a guideline. Please!! There are many drugs used for Cushing recovery and the dosage from one medicine to another is completely different. My doctor is using prednisone for me. I came home from the hospital on 40 mg. Within one week I was on 30 mg. And steadily dropped. He told me that the lower I go, the slower I go. We are addicted to the cortisol, and like an addict, we have to be weaned off from the drug.
Almost immediately I could sleep. After two years of sleeplessness, I was thrilled. The horrible rib pain took a few weeks but it finally went away. The choking was gone within two weeks. The edema started to clear up right away and my blood pressure dropped to normal within a month. One thing I've found to be true with me is that MOST of my symptoms seem to be going away in reverse. By Christmas my moon face was gone. Within six months the hump was gone. For the first time in two years, I was actually cold and needed covers. I can climb stairs. My knees are healed after 15 months.
I'm not going to make light of recovery. It is not easy. The leg and knee aches are horrible and I still have them, only they are not quite as bad now as a month ago or the month before that. Six months post-op I could finally squat. The weight? Everyone wants to know about the weight. I've only lost 30 pounds and 20 of that was before I came home from the hospital. I still have a lot of muscle weakness and it's very hard to exercise, but I try. I had a panic attack two months post-op that put me in the hospital. My last asthma attack was in January 2001 and I have not used my nebulizer since February. My lungs are clear.
My son took his program to heart. He has shared so much with me these past few months, more than I would ever have dreamed possible. After all these years I've heard: "You're my mom and I love you and I can trust you with my most intimate secrets." He rediscovered God. My daughter-in-law talked her way into a 'boot camp' program and was released in February 2001. The courts gave her the children in May 2001. The next week - she violated her parole and used drugs. She was sent back to rehab for a month. My son was sentenced for OUIL in mid June and was sentenced to 6 months in jail. For probation violation the judge was going to put him in prison, but his lawyer and probation officer convinced the judge that what the other judge had given Jeffrey was sufficient. Alcoholism is a sickness and it's a long road home. He stayed sober for 9 months. Hopefully, next time is forever. And he did not use drugs. I was so thankful for that. The children…they are with their other grandmother, and they are safe. All three children are older and wiser and know a better way to live. It will not be easy to force them to live as they did before. Jeffrey and Shirley are getting a divorce and when that chapter closes, maybe he can get on with his life a little easier.
My cortisol level was checked the first of June - 11.1. I'm well within the normal range and I'm happy about that. I want to be honest. Complete recovery does not happen for everyone. If I'm never to be completely well, that's ok. A comfortable recovery would make me happy. There are a lot of people do recover completely and can move on with their lives. But I don't think you can ever forget Cushings. A disease that is capable of changing your life physically, mentally and emotionally does not go away overnight. And the support we need is not what you can find from just your doctor, your family and your friends. I can truthfully say I would not be where I am today without the additional medical knowledge I've gained from the Internet. And even more important yet is the support I've found from the Cushings support bulletin boards. The people I've met…the true caring, understanding, and sharing that I've found….well, let's just say that I couldn't have made it….I just couldn't have made it. I felt so lost before I found all these wonderful people. The opportunity I had to actually meet people who had or have Cushings was very touching for me. And now I'm part of an awesome group and will continue to be here for others. I Will Always Be Here For You…God Bless…
The last time I tried to wear this jacket was shortly before my diagnosis, in the spring of 2000. At that time the jacket lapels were 6" from meeting in the center, leaving me with about 8" from being able to button it. I tried it on in the spring of 2002. As you can see the lapels will now cross to the center of the opposite breast.
Click on the images to view fullsize.