Updated: Dec 2, 2019
It was the years 2009-2010 when I started to notice I was getting ill. I say it like this because NOTICE is the key word here. I am the type to keep going even when I am sick. I was too busy to take notice that I was not well. Yes, I hurt everywhere, yes, I was exhausted beyond belief, yes, my glands ached... but no time for Susie. You see I was running my own business, taking care of my mom who had dementia, my daughter had become ill before this with acute OCD, which almost killed the daughter I love so much. The economy sucked and we were struggling. My husband was an alcoholic and owned his own business AND I had to help with that. So who had time to be sick, "Not me!" I said. Well, one day I pushed too hard and my body pushed back.
It was Christmas time, my very favorite time of the year. I love it so much, ask any of my friends or family, I have decorations up from October thru January. Tree up by November 1. Ok say it, I am nuts. But to continue my medical journey I must set the picture. I was sitting in the parking lot of Walmart, with a short list of things I needed. I looked at the distance from me to Walmart's front doors. I truly felt sick inside thinking I could not do it, I was too exhausted. (What? Too exhausted? Not me!) But thinking of walking that short distance was way too much for me. As all "a" personalities know, you do it anyway. So, I did, I pushed all the way, not believing my body was warning to me. This is when I decided that maybe I should visit a doctor. Maybe it was not just stress related. Not that kind of exhaustion. So I went in, thyroid testing done as there is so much thyroid disease in my family, plus I had gained weight. When the results came back I was found to have severe hypothyroidism. After taking the thyroid meds, I felt a bit better but still had the aches and the pains. I also started having a, lets say it nice- a potty issue. I was afraid to be far from a bathroom. I got rashes all over my body, I itched, I was blotchy. So, I braved it and went to a dermatologist. Well, after a gazillion blood tests done, he said I was allergic to the sun, and more than likely had lupus. (I did have a positive ANA speckled pattern). This made sense to me as the sun was really never my friend. Lupus was pretty common I thought. It explained my joint issues and some of my other rash issues. Let me tell you about one rash. It was the whole back side of my body from feet to the waist, upper arms also. It itched so bad I thought I would die. It lasted from October of one year until spring of the next year with no relief. They would give me steroids, which would help, but as the steroids would finish the rash got worse again. Ok onward. So all this made sense to me. As this ended my hands started up. My hands had started to do magic tricks on their own. They would turn bright red, then blue, then white. "What the HELL do I have now!" I thought. My hands also started to get what they call "mechanic hands." People would stop me and ask what was wrong with them because there were plaques all over them and they were swelling up all the time. I could not wear my rings. My nose started to change colors doing the magic show too. Let me point out here, I had taken on a third job as a manager of a jewelry store which was very, very stressful and still taking care of my mom and alcoholic husband. I had also decided to take online courses into a medical field so I could work from home after retirement as I knew my body would not last much more after 62 being on my feet. (By the way when the course said, “Just 20 hours a week you can achieve a new degree in blah, blah, blah...") It actually took me another 40 hours a week to do the courses and get good grades. But I did it said this still "a" personality. Sometimes my magic trick hands would hurt so bad, I would cry from typing. So onward again...to the dermatologist I went! Up to this point I never ever went to doctors. Never called in sick in my life to a job. Well anyway back to the doctor I went. Now he said, "You have Raynaud’s disease." So, once again, I thought, "What is going on?" I was even doing my online classroom programs on the potty because I was so sick. My hands ached so bad I could not stand it. I hurt everywhere. HUM. So, I asked him to send me to a rheumatologist and he did. My new friend was Dr. Hermitano. Little did I know we would be besties before this was all over. He checked me out pretty well, looked at my hands, read my history and told me I had scleroderma not lupus with a lip biopsy. Well this is a scary diagnosis as I was told by my primary, "Be happy your not diagnosed with scleroderma!" (LOL). So, he put me on Plaquenil and another strong drug for my magic tricks. I do not recall the name. A few months go on, the Plaquenil helped the joint pain and the other prescription helped the magic tricks, but I now had new symptoms. I found weakness- a LOT of weakness. I could not pull myself up the outside steps to get into my home after work. I could not lift my legs up over a curb, so I would walk all the way around instead. I also had a hard time getting into my truck becasue my arms were so weak. So... on to my primary, who suggested depression meds. She knew what I had been going through in my personal life. I argued with her I was not a depressed person, there is something wrong with me. She then tested my feet and said, "Well do you want to see a neurologist or take the depression meds?" Thinking I would then agree to the meds verses the neurologist, I said ok I will do both. Well after the depression meds started, I was now actually depressed as I gained more weight, nobody warned me about that side effect! No wonder people need them. Gee. So now to the neurologist. Another bestie for life we became. She was very interested in my case and could see it was complicated.
By the time I saw my neurologist in 2010, I was now having even more weird issues: my balance was way off, my gait, my speech, I would lose the words for things calling a mirror a window, saying stupid things, my concentration was gone, my short term memory was shot. ( I use to brag about my memory I had often stated if I tell you I forgot something I am lying to you because I never forget). Well God got me for that vain remark. I walked like a drunk, I would walk into door frames, I had out of body type experiences, I would have seizure like activity without your normal called seizures. I ended at least twice in the ER with these symptoms as I thought I was having a stroke. One time my Raynauds was so bad the ER doctor brought in his students and other doctors to see the magic I could do, which made them worse as stress can also cause Raynaud’s to flare. Once I landed in the hospital for many days as they ran tests on my heart because of family heart history. The on duty doctor told me it was all in my head due to stress. You know what? I could almost believe that because my life was getting more stressed day by day. I went home feeling like a heel, only to be more stressed. It is a vicious cycle. Meanwhile the rheumatologist had diagnosed me with myositis which is an autoimmune progressive muscle disease. This was causing a lot of issues with the weakness I had and my walking issues. Then the GI doctor after a colonoscopy diagnosed me with a rare microscopic autoimmune colitis. Guess that was the mystery of the potty problem!
The whole time the neurologist is working on her work up with eeg, emg, nerve conduction tests, and biopsies on my nerves and muscles. Muscles confirmed the rheumatologists diagnosis of myositis as I had inflammatory muscles and nerves. But all this did not explain my cognitive decline. The eeg did show slowing on the left temporal front lobe. There was one piece of the puzzle. At this point before the diagnosis of HE, my neurologist told me to quit my job. Point blank she told me I could die if I did not. YIKES! Now I was stressed. This was June 2011 More to come...
By Susan Foley