It is now, April of 2011, one year and one month since I had a tumor removed from my pituitary gland. My hump is gone, my face is thinner than I ever remembered that it was, my facial fuzzies are gone, regular deodorant works just fine, I don’t lose hair in the shower, and my blood pressure is amazing. I don’t get bruises like I used to, and my least favorite but most indisputable sign of improved health is regular periods. It occurred to me recently that for the first time in seven years, I could have more children if I wanted to. I came to the conclusion that I did not want to repeat that journey, but I am grateful that my children were born when I was young, or I would have been stuck waiting until my late thirties to be a mom. I have also lost another strange symptom. I say it is strange because I have never seen it on a published list of Cushing’s symptoms, and no doctor has confirmed it to be related. However, my hands used to shake intermittently every day, and it happened more frequently and with more intensity as my disease progressed. Amazingly, this shaking was a regular occurrence ever since I was a teenager. Even more amazingly, my hands have not shaken one time since my surgery. That means I could presume that I had my tumor since I was sixteen years old…all the while seeming perfectly healthy for nearly a decade before I even began to suspect a problem. Since my surgery, I have had three clear MRIs, and I have been cleared from further routine MRIs pending continued “normal” blood work. I put quotes around “normal,” because my adrenal axis has still not demonstrated recovery, meaning I do not produce enough cortisol to keep me safe and healthy. I rely on a bottle of synthetic cortisol every day. I will never forget when my medication went on manufacturer’s back order. I had to travel to neighboring towns, three months in a row…taking the last of what each pharmacy had on their shelves. As I began to worry about the continued difficulty of obtaining my life-sustaining medicine, I began to feel fearfully vulnerable. I realized that if there were some great catastrophic emergency like an earthquake, or if I got lost in the woods, or some other crazy event; that I could potentially survive the event, and die if I couldn’t get my meds. I know that sounds dramatic, especially since I later found out that prednisone could perform the same function. Nonetheless, I began to contemplate life and death more in regard to my medicine than I did in regard to brain surgery. Thankfully, after a few months, my cortisol meds became readily available again. In my mind, I will not consider myself cured from Cushing’s Disease until I no longer need medicine to stay alive. I know that there is a 90% chance that my pituitary/adrenal axis will recover. However, I know there is a 10% chance that it will not. Each testing time, I feel more and more normal when my meds are tapered for the test. I am currently waiting for blood results as I type. At this time I have resumed my 10mg dose, waiting for the call. I was pretty sure my results would be good this time, until yesterday when I felt that yucky feeling in my head again. It was as though I could feel every step I took inside of my head. I took a little extra cortisol (above my 10mg dose) to feel better again, longing for the day that I can just wake up with the hormones I am supposed to have.
Another lingering effect from Cushing’s Disease that I may or may not live with forever, is osteoporosis. Imagine, 33 years old and diagnosed with osteoporosis. I wonder: if I have it now, how weak will my body be when I am 50, 60, 70 or older? I remember how I cried when I heard this. I never cried when I heard I had a tumor or when I was told that I needed brain surgery. Regarding the tumor, I only felt relieved and even excited. I was going to be fixed. This diagnosis was different. I felt like I could never be normal again. Could I still go to the gym? Could I wrestle with my kids? Might I fall down the steps and break my hip like an old woman? Things didn’t look better when I began to read about the medications for treating osteoporosis. In fact, I grew even more infuriated. I was diagnosed in April of 2010, one month after the FDA issued severe warnings against using popular osteoporosis medications unnecessarily. They were thought to cause increased risks of certain kinds of fractures and severe bone pain. It made no sense. It sounded like the meds could cause exactly what we were trying to prevent. What did it matter if I was going to fracture my femur instead of my hip? Besides, I was having enough pain already. My shoulder and fingers will still causing me daily pain. Why should I take pills that would cause severe bone pain too? Anger boiled inside me for all of the doctors who knew I wasn’t getting a period for all those years. I was in my early twenties at the time (young and clueless), and I had not taken the time to understand how all of my hormones worked together and how this would affect my bones. However, my doctors should have known. When they said it was okay, I trusted them. It was their job to protect me. How could I spend the rest of my life wasting away, while they never even prescribed calcium and vitamin D? I am not sure if it would have mattered, since I think my issue was not lack of nutrients, but rather an inability to absorb them. Still, I felt those people had cost me my life as I knew it.
After much research I found a few articles that indicated the Cushing’s patients could experience improvement in symptoms of osteoporosis. My hope was that I could experience that recovery without medications. It made sense to me. My body could now absorb calcium and vitamin D (and who knows what else) properly for the first time in at least seven years. I reasoned that the human body is constantly rebuilding and repairing damaged cells, so why not my bones? Now that my body was not working against itself, perhaps time to grow might be all that I would need. I opted not to take osteoporosis medications, at least for now. I have to wait one more year (two in total) for another bone scan to see if any positive change has occurred. In the meantime, I have continued to go to the gym and do what I have always done. I figure my body’s capability for doing what I do each day is no worse than it was the day before I found out that I had osteoporosis. Besides, I know that weight bearing exercise can help a body grow stronger, and that is exactly what I need. I have gradually resumed doing all the things that I read that I should not do, like jogging, jump roping, and playing tennis. I even roller skated with my kids a few weeks ago, after sitting out of several parties. I felt stupid, knowing that one fall could change my life. But at the same time, I felt liberated, like I wasn’t giving up my life yet. I did fall twice, and I jumped right back up without any trouble. I am not sure I would do it again, because I felt like a nervous rebellious child inside the whole time, envisioning myself having to explain why I made such a stupid choice, envisioning trying to chase kindergarten kids around on crutches. However, for that one night, I am glad I did it.
My arm is mostly better. Before it was all said and done, I learned that my real problem was in my shoulder. I was given a steroid shot, and several months of physical therapy. While I improved enough to brush my own hair, I still experienced sudden severe pain if I moved my arm the wrong way. I eventually gave up physical therapy, and I think that was what has helped the most. I wonder if my shoulder didn’t need rest more than therapy. I continued to include shoulder exercises in my routine at the gym, but only once or twice a week for a few minutes instead of for an hour at a time. I still have occasional quick, sharp pains. However, now it so infrequent, I feel certain that this will not be something I will have for the rest of my life like I had initially feared after a year of pain. My fingers are the same way. They still don’t seem to bend the whole way as soon as I wake up. However, now, by the time I walk to my bedroom door in the morning and reach for the door knob, I can wrap my fingers around, and by the time I walk down the hall, my fingers feel perfectly normal.
I have one more strange thing called “Raynaud’s Phenomenon” that is new to me this year. When my fingers get cold, two of them turn yellow and somewhat numb. It lasts for 5-10 minutes and goes away. There doesn’t seem to be much that can be done about it. I am not sure if it is related to Cushing’s Disease or cortisol or anything else I have been through, or if it is just a coincidence. Doctors are not suspecting any link. Nonetheless, I always wonder if everything that happens to me physically might be because of Cushing’s Disease or adrenal insufficiency (lack of cortisol).
Speaking of that wondering, I even worry that my Cushing’s Disease is back every time I feel any of the symptoms that were part of the Cushing’s Disease package. For example, I have been having trouble sleeping off and on for the past two weeks. I am wide awake until midnight, even though I get up at 6:00 AM. I have woken up a few times in the middle of the night. My back was hurting to sit at the table this evening, and I remembered how it used to hurt before I knew I was sick. Worse yet, I had trouble buttoning up my new pants last week. When I looked in the mirror, by belly was popping out and the slim me that I had gotten used to seeing, seemed compromised. I weighed myself and was 118 pounds. Small yes, but still 3 pounds more than I had been the week before. What if my tumor was back? Would I have second surgery? Should I just quit my job and enjoy my life while I still have one? Why did I give away all of my size 8, 10, 12, and 14 pants! I crawled into bed trying to remind myself that I had just had a clear MRI this month. I fought off the urge to remind myself that my original tumor had supposedly been unidentifiable on the MRI prior to my surgery. I tried to recall if I had a period this month, but I couldn’t remember. I had stopped keeping track after a while…how stupid in my condition. To my relief, I woke up in the morning back to my normal size, and looking good in my jeans again. I chalked it up to being bloated. I guess that happens to normal women. It was just another example of how Cushing’s Disease will never leave me completely.
Some positive things have come about from my experience with Cushing’s Disease. For one, I treat my body better than I did as a teenager and young adult, and probably better than I would if I had never had health problems. Healthy diet and exercise have become a habit for me over my years of struggle. Additionally, I have become more proactive and responsible for my health. While I am grateful for doctors and science, and I know I would be dead or dying without them; I have learned that I know my body. It is no longer enough for a doctor to tell me what is and isn’t wrong with me. I know that just because they know more than I do, they do not know everything, and that it is my obligation to look out for myself. Just because a doctor doesn’t know what is wrong, doesn’t mean nothing is wrong. Finally, I have learned that I am vulnerable. I know that doesn’t sound like a positive thing, but I guess it can be. I know my health is not guaranteed, my time is precious, and there are a lot of things in life that aren’t really that important.