Recovering From Cushing’s Disease

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Recovering From Cushing’s Disease

My tumor was removed on a Thursday, and I went home early on Saturday. I was surprised to be going home so early. I had only begun to be able to use the bathroom alone, and I felt very weak and groggy. My six weeks of recovery had begun. The nasal congestion had become increasingly problematic for me. I still wonder if I did not get a cold during that same time. I was so stuffed up, I could not breathe. I had to take hot showers several times a day just to get some steam into my airways. I was forcing up phlegm from my throat just to feel like I could breathe, all the while praying that the pressure from doing so was not going hurt something in my brain. I had been clearly told not to sneeze, so was it safe to struggle with all this congestion? All of this was very scary for me. I called the on-call neurosurgeon, but he didn’t seem concerned. My third day at home, I got the worst headache I have ever had in my life. This time, it did not seem to improve with medication. I might not have been worried if this had happened in the hospital. However, I was now at home, and out of nowhere, I was in horrible pain. I was certain that something was wrong. I called the on-call neurosurgeon at Hershey Medical Center again. He advised me to put a bag of ice on my face to see if that would help. I was irate. Was he for real? Feeling helpless, I put a bag of ice over my face, feeling certain I would be in the ER by the end of the night. I had visions of being life-lined to Hershey, wondering if my local hospital would be equipped to deal with my condition. Strangely, the doctor must have been right. Within an hour or two, I was okay again, and it never happened again after that.

I was off work for six weeks. I slept most of the day for nearly the entire six weeks. During this time, I would sleep in until 11:00 AM, have some lunch, and lay down for a nap by 1:00. My naps would last for hours. When I finally woke up, I could barely stay awake for dinner, and then I was ready to go back to bed for the night by 8:00. Nonetheless, I was eager to get back into good physical shape again. Two weeks after my surgery, I started trying to take walks around the neighborhood. I was surprised that I only made it for about two minutes when I had to turn around and come back home. I can’t describe how I felt during these walks. I felt almost disoriented in my head. I didn’t have a headache. I just didn’t feel right…kind of like I had been on a carnival ride, but not dizzy…just strange. I gradually built my stamina over the next couple of weeks. During the third week, I pushed myself to walk for 20 minutes, even though I collapsed for my nap as soon as I got back home. When all this started, I had planned to go back to the gym by the third week. I began to realize that wasn’t going to happen, and I was growing impatient with the fact that I had not lost any weight yet. I remember when I planned for all this time off of work, I had a long list of movies I planned to watch, extended family to visit and spend time with, and leisurely household projects I thought I would finally have time to do while I was off work. I could not believe that, three weeks into my recovery, I had only had the energy for two movies, no visits, and I had done absolutely nothing around the house. I was blessed that my family was so supportive. My children were relatively independent when they needed to be, my husband was very doting, and my mother-in-law, who lived with us, took care of nearly all of the general housework.

That third week, I began having the most terrible pain. It came out of nowhere, but everything hurt. When I got out of bed, I could not even stand up straight. It was like I had to straighten up in a series of effortful moves, like a creaky old lady who couldn’t straighten her back…for a few seconds anyway. My feet hurt like I was walking on rocks. My fingers were so tight and sore that I could not wrap my fingers around my door knob. I honestly had to use both of my flat palms to turn the door knob. These pains gradually subsided throughout the day, but never completely went away at that time. Each morning it started over again. Now, in addition to being severely tired, I wanted to stay in bed, just hoping to sleep through all this pain. My arm started to hurt so badly that I could not lift it. My daughter had to brush and blow-dry my hair. I needed help taking my shirts off. I couldn’t lift plates from shelves above my head. My husband would catch me yelping out during my sleep, only to find out that the blanket had fallen on my fingers or I had accidentally turned my arm in my sleep. Just moving was so painful. While these pains were always at their peak in the morning, they essentially started over every time I took a nap, or even sat on the couch for any length of time. I called my doctor, and was reminded that Cushing’s patients often feel worse before they feel better, and that my body was going through steroid withdraw. I protested that this didn’t make sense to me…that I was just now beginning to feel so much pain, since my steroid withdraw had begun three weeks prior. Blood work was done, and everything looked as expected, so I was left to wallow in pain. I took Tylenol sometimes, but I tried not to. I wanted to know when I was in pain, and when I wasn’t. I didn’t want to think I was better, when really it was just medicine masking what was still wrong with me. I felt like I was on a journey during which it was important for me to stay in tune with what was happening in my body.

Over the next two weeks, most (but not all) of my pains gradually decreased. I continued to have stiffness in the morning…especially in my fingers, and my arm improved very little. However, I knew I was going back to work as a kindergarten teacher in just over a week. I felt like I had to begin rebuilding my strength and stamina or I would go into shock when I went back. I tried to get up at a respectable morning time, and I tried to keep my naps less than two hours, yet was rarely successful. I returned to the gym, but I could not even look at people on the elliptical machines without feeling sick in my head. Instead, I started walking on the treadmill at a very slow pace. I remember feeling ill after ten minutes, wondering if it had even been worth the drive to the gym. Again, I went back to bed nearly as soon as I got home. I was so torn between forcing myself to be more active and the alternate of taking my last two weeks to rest and sleep all that I could. I needed to be ready to go back to work. I had really done a number on my once generous savings account by having to take four of my six weeks off work unpaid. I knew that when I returned to school there would only be two weeks left before summer vacation. I prayed that when the time came I could suffer through those two weeks, rather than lose more pay.

I lost my first couple pounds that fourth week…just two, but until then I was beginning to feel concerned that it just wasn’t going to happen. However, when it started, it happened fast. I lost anywhere from two to five pounds a week for months, and I was ecstatic as my face began to return. That being said, my face had been a Cushing’s face for so much longer than I had realized, that I had no idea how much more it was going to change in the months ahead. It was fun every few weeks to notice that my hump on my back was just a little smaller than the last time I checked. I remember how my husband and I chuckled when I could feel bone there for the first time in years.

I was right I when had predicted that those last two weeks of school were going to be rough. The children were so happy to see me back, and it felt so good to know how I was missed. Nonetheless, I think I barely made it through the days. I felt sick off and on throughout each day. I was so glad that most of the academic stuff was being wrapped up and we were entering the housekeeping phase of the end of the year. Things like field day, assemblies, movie days, and other special events took the pressure off. However, I had come back to report cards being due even though I had been off for the past six weeks. My substitute did a great job of having most things taken care of, but it was still a trial to pull everything together. Much of those last two weeks of the school year are a blur. I remember coming home each day, falling asleep almost right away, waking up to eat the dinner my husband had made, and going to bed for the night. I don’t know if I could have made it, if I hadn’t had the assurance of knowing that my time back to work would be so short. Once school was out, I went back to my routine of sleeping in, taking multi-hour naps, and going to bed early. My body aches, while less intense, still did not go away. I believe it was the beginning of August (five months after my surgery) before I finally starting being able to stay awake for most of a normal day.

On the up-side, the weight was falling off beyond my wildest expectations. The week before my surgery, I had weighed 152 pounds. I had set my dream weight at 130 pounds. It had been years since I was that size. Imagine my surprise when I stepped on the scale to find that I was 125 pounds by October! I had lost 27 pounds in seven months…six months really, if you recall that I didn’t lose any the first month. I had gotten rid of all of my clothes that were smaller than a size 8 years prior to my surgery, so I was scrambling to keep myself in decent looking clothes. Although I was still recovering financially from my time off work, new clothes were a non-negotiable expense. Believe it or not, I continued to lose weight. By spring I reached a weight of 115 pounds…a size 5! I do not think I have been that size since my first child was born, thirteen prior.

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