April 1, 2015... accepting the challenge

I have accepted the challenge to participate in the Fourth Annual Cushing's Awareness Challenge. This is a challenge for me to blog every day in the month of April. There are a variety of topics and questions that were kindly provided to give me some inspiration. April 8 is Cushing's Awareness Day and also is Dr. Harvey Cushing's birthday. So, Challenge accepted... here goes .....

My challenges with Cushing’s:

I have had many challenges as the result of having Cushing's. When I first noticed symptoms I was having, everything really happened rather quickly. I would have pains in my feet that made them hard to even walk. I started getting weak, aching muscles. Insomnia started to be a regular thing. Sitting and watching tv or reading a book I would suddenly break out in full body sweats like I had just run a marathon. I had trouble breathing. More frequent head aches, some severe Migraines. I would get so sick from my migraines that I would be vomiting. I remember one day I was going home from work and I had such a bad migraine I could barely see. I took all the back roads that were less traveled to be safer while I was driving. What was normally a 20 minute drive took me three hours to get home. I came in the door, went straight to my bedroom, and collapsed for the rest of the night.

Little things started happening.. like I would be checking books for damage at work and suddenly I couldn't hold onto the book. I would end up dropping it. Or I noticed that I wasn't as fast at checking things in as I used to be. My muscles were sore all the time. I saw floaties in front of my eyes. I was dizzy most of the time. And the worst of all was the weight gain. I had started eating healthier and working out because I was feeling pretty good about my prospect in life at that point. I was walking 4 - 5 time a week and eating lots of salads and fresh veggies. It didn't make sense. I was gaining weight very quickly. I gained over 50 lbs in about four months. I started going to the doctor then. I knew something was wrong. There was no way I could gain that much weight and not have some kind of medical issue.

I guess you could consider that my first major challenge... Getting the doctors to listen and take me seriously. My doctor suggested blood work to see if any abnormality could be identified. Labs came back with red and white blood counts off. They were "suspicious" but we would just wait a few weeks and then try again. Maybe my body was getting over some kind of infection that I wasn't aware of. So, we waited and retested... Same result... "suspicious" red and white count. They shouldn't be this off... the doctors words, not mine. But again we repeated the tests over and over and over again. My symptoms were still there. Gaining more weight. I was gaining from 3 - 5 lbs per WEEK. That's right.. not monthly but WEEKLY. The final straw came for that doctor when I went to her for yet more labs and I was expressing my frustration. By this point I had gained over 100 lbs in about 8 months time. I was morbidly obese and closing in on some major medical issues because of my weight. I knew I couldn't survive much longer like this. The doctor told me that I should be celebrating. At least I'd only gained 2 lbs that week. That was it for me. I went home, found the number for my dad's doctor, and called and made an appointment with him. It was several months out, but at least I would have a good doctor finally.

Going to my new doctor turned my life around. Dr. H is absolutely amazing. He suspected Cushing's from the time he laid eyes on me. We got to work with labs and a few days later I was being referred to an endocrinologist. Over the course of the next 8 months I would go through many horrific tests, try having needles stuck in your body, especially in your skull and they shoot electricity through them. But in the end, on October 31, 2012 I finally had a successful surgery and came out of it alive. I had many more challenges as we went. By this point I was not able to walk, I used a wheelchair to get around. I could not bathe myself, it was too tiring. I had to have help and then ended up taking a nap for 2 or 3 hours after because it wore me out so much. I couldn't do laundry, dishes, make dinner, or anything. I was pretty much bed ridden. I could sit up and talk, a little. But even that wore me out. I spent most of my time sleeping. It was so frustrating to me.

I was missing out on so much of my kids lives. From parent teacher conference to school plays and performances, I was missing it all. Sure, someone would record it for me... but let's not kid ourselves.. it's not the same. I was increasingly sick, getting new diagnosis all the time. I had spent a good portion of my time of 2012 in and out of the hospital for testing, a failed surgery, a successful surgery, and some various illnesses.

December 25, 2012.. Christmas morning and my kids, the devil, and I were all gathered in our living room opening Christmas presents. The kids were having a blast and very excited about the gifts they were unwrapping. I had unwrapped one present. Then, this feeling came over me and I knew I needed medical help. All I could do was look up at my so-called husband at the time aka the devil and say "Help Me."  He looked and me and ask what was wrong. I just kept saying "Help Me. I need help. Help Me." And then I passed out. 911 was called and the ambulance arrived. I have a cloudy memory of that. For the most part it felt like an out of body experience. Like I was watching my life play out in slow motion. I was rushed to the hospital. I have pneumonia, respiratory distress, and a few other complications. I was in the hospital for about a week to 10 days with that episode. I would say that I spent about 98% of 2013 in the hospital. No joke. I have the medical records to back me up on this one. Every major holiday, non major holiday, family birthdays, and even just your run of the mill days, I was in the hospital. All the nurses throughout the hospital at Cox South in Springfield, Missouri know me now. The only floor I haven't been on during this illness is the maternity floor.  Almost all the doctors and nurses in the emergency room there know me also.

I have gradually gotten better over time. Throwing the devil out and filing for divorce last year helped me so much. The divorce frees me up from that sick entanglement. I am rid of him. My health has gotten so much better since he left.  I now walk on my own, with occasional assistance. But I can walk. My kids and I walked to the park that about a mile from our house a few weekends ago. It was amazing. Had been years since I had done that. We played for several hours and then walked home.

I can do dishes, laundry, bathe myself. Still get tired occasionally, but am still able to stay awake. I'm just aware that I am tired. I have gained so many illnesses since being diagnosed with Cushing's Syndrome. And now, we test again. I have started having some of the symptoms again. Breaking out in full body sweats when I am just sitting and reading.  Sore, weak muscles. Joint pain. and worst of all... weight gain, AGAIN. I had lost a little over 100 lbs after my surgery and was almost back to my original weight. I was so proud of myself. Now I have gained between 45 - 50 lbs back. So, my endo is tapering me off my hydrocortisone. Then, after I am totally off of it for a week, we do labs to see where my numbers are. He suspects I might have another tumor.. here we go again, another challenge to beat.....