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“What you don’t know can’t hurt you”. That phrase has never passed through the lips of a Cushing’s victim! You haven’t heard of Cushing’s you say? Let me introduce you. I first met Cushing’s (formally) on April 24, 2000. I was laying in bed at the UCLA hospital; I had been in an automobile accident. When I heard the words “I know what’s wrong with you, you have Cushing’s disease” coming out of the doctors mouth, I had no idea what she was saying. As she continued, I slowly began putting the words together like pieces of a puzzle; finally a picture of the demon that had taken over my life began to take shape.
In early 1996 I began having some tingling and numbness in my right hand. I wasn’t too concerned about it since I had been doing a lot of gardening and I felt it could be related to that. After a few more months of this same problem, I decided to go to the doctor for an opinion on what could be wrong. I left the doctor’s office with no answer to my problem, just a suggestion that I try not to over use it. Over the next several months I noticed I was gaining weight even though I had not changed my eating or activity habits. I had always been thin even after having three children so I was pretty surprised about the weight gain. I decided to join an aerobics class to get a little more exercise but even after months of aerobics I hadn’t lost any weight; I actually gained some. By early 1998, my health was really starting to go down hill, the tingling and numbness in my hand before was now also in my feet and other hand. I had gained about thirty more pounds, my hair had become thin and I was losing the strength in my arm and leg muscles. The doctor’s office became my second home, it seemed as though I was there every other day. The health insurance I had through my husbands work was through an HMO. The physicians that were there did not stay long. I would have one doctor maybe two or three times and just barely get through all the paperwork and get started on my medical problems when there would be a new doctor replacing them at my next appointment. So I was pretty much spinning my wheels trying to get help. I had a barrage of tests done and yet there was never an answer for all my symptoms.
By 1999 I had become even more ill, weighing a whopping 90 pounds more than I had before. I had stopped menstruating some 8 months before. I had lost almost all of my hair and I could not sleep. One day I was having pain in my ear, as I frequently had before so I again decided to go to the doctor. Being that it was the weekend and the doctor’s office was closed I went to urgent care. The on-call physician asked me if I had diabetes, and being that I said I didn’t think so, he decided to check my sugars. At last, I thought, he had found the answer to all my problems, diabetes. I left there that day with a new hope, a prescription and a diet to follow. My newfound hope soon went out the window. With each following doctor’s appointment my medicine was raised, my sugars kept rising no matter what I did. I still wasn’t sleeping and I was weaker than ever. I was getting hair where I didn’t want it and losing it where I wanted it. I had one other symptom, one that I just could not deal with and no one could explain. There was this feeling of electrical pulses that would run up and down my body inside; this was a very uncomfortable feeling. One day at my doctors she blew up at me, yelling and cursing and saying, “you are either in my office every day or calling me every day” to which I retorted “then find out what’s wrong with me!”
I had just celebrated my fourth year wedding anniversary and my husband had bought me a brand new car. I should have been happy, but I just didn’t feel right. The doctor had put me on insulin some months back and she had raised the doses about four times already. I was sick and tired and tired of being sick, tired of being treated as if it was all in my head and scared to think maybe it was! In January of 2000, I came to the decision that if I didn’t find another doctor, I wasn’t going to get the help I needed and maybe even die. Though it was against my HMO’s regulations to go to another doctor without your primary care doctor’s approval, I did anyways. I didn’t know this doctor, I hadn’t even heard of him before but somehow I just knew that the name I was looking at would know how to help me. I made an appointment and right away he came up with a slew of things to check for. Some of the symptoms I had been feeling seemed to match those of panic attack victims; I felt it couldn’t hurt to see someone who specialized in the disorder. I also made an appointment with a psychiatrist for my depression. After about two meetings with a support group for panic disorders, I felt even more depressed because I didn’t have anything in common with the other people. One day I just couldn’t deal with it all anymore; I didn’t want to live. Luckily with my daughter’s help I was able to get the help I needed at the hospital. I spent the next two weeks in the mental health ward there. The stay there actually helped me. The drugs they had me on kept me from focusing so much on my symptoms and helped me get some sleep.
By the following month I had begun to feel a little better and was once again able to do some errands around town. One day I was on my way home from running errands when everything went black. The next thing I remember is hanging upside down in my “less than one year old car”. It was totaled but miraculously I had survived with a minor concussion, a severed ear, a few cuts, and bruises. I was transferred to UCLA to have my ear re-attached. I had been there less than one day when I learned the name of this horrible invader. I was referred to Dr. Martin Weiss of the USC hospital. After six months of tests and conferences, I had transsphenoidal surgery to remove the pituitary adenoma causing my Cushing’s Disease.
It hasn’t been a bump-less road back to normalcy. I can’t even remember what was normal for me. I still have a lot of health problems that are attributed to the Cushing’s. To name a few, I still have diabetes, but am off insulin, and have osteoporosis, high cholesterol and neuropathy in my arms and legs. While in the hospital learning of my Cushing’s, I learned that there was another tumor, a hemangioma, located in the occipital lobe of my brain. A year after my first surgery, I had this tumor removed. As with most surgery, there are certain risks and unfortunately, I lost a large portion of my peripheral vision during this operation, so I am no longer able to drive. I also have been diagnosed with dupytrens contractures of both my hands and will need to have an operation on both of them in the near future. The operation will not cure the problem but will help relieve the contractures.
I am non-the-less happy to be alive and I’m expecting my first grandchild in three months! I hope this account of my ordeal will help anyone who might be going through this themselves or their loved ones. Please know there is a light after all the darkness! So hang on and keep fighting. Don’t let anyone tell you how you feel! Make them listen to you and don’t stop until they do.
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