My hands are committing treason today and doing their own thing, but it has been so long since I have been able to share. I placed my laptop on a table at a local coffee shop this morning. I ordered a scone and large coffee, looking forward to a relaxing start to my day. Within seconds, I tipped my cup with a rogue finger, but luckily, it just wobbled and corrected itself. I took a deep breath and opened my scone. After a few bites, I looked on the floor and realized that it looked like a child had been eating in my spot, then realized the mess was all my own.
I began this blog two and a half years ago as a method to keep my friends and family updated. It soon became a tool to express my feelings about my disease and current methods of treatment. One blessing, I had hoped for and was given, was that I would reach other patients or family members with Hashimoto's Encephalopathy. I recently received a comment on my last blog from a daughter of a HE patient. My heart aches for the pain she experienced, but I also rejoice in and am comforted by her sweet words. After all, there aren't swarms of people wearing support t-shirts or wearing ribbons for HE. Lisa shared her father's experiences with various treatments. That is why I do this.
As many of you know, I first experienced mild symptoms (headaches, anxiety, difficulty with speech, hand tremors, and thyroid dysfunction). I was hospitalized after starting to experience what was initially referred to as myoclonic jerks. High dose steroids stopped the movements. I had mild stroke-like symptoms for a few weeks, and then my only symptoms were from medications. Complications from the steroids sent us to the Mayo Clinic searching for other possible medications. After a relapse of myoclonus, I began Cell-Cept. This allowed me to taper off the steroids, stopped symptoms, and within a year, I was able to discontinue the insulin from the steroid induced diabetes. Nearly two years later, I began to experience tremors, poor motor skills, memory problems, and headaches despite the addition of Clonozapam. My doctors and I agreed that the benefits from the Cell-Cept no longer out weighed the risk factors.
My immune system was fully suppressed for nearly 3 years. Now that it is awake, it has started to attack the lining of my stomach and intestines again. The tremors and muscle spasms now include my heart, creating arrhythmia's. I had originally been told that a pacemaker would be in my future, but I was told at my last visit that this may not be an option. My Cardiologist is concerned about the complications my auto-immune disease would create. He prescribed a new medication for the rapid heart beat I experience occasionally, but I have not been able to take this due to periods of time when my heart is slowing down too much.
My Neurologist increased my medication to slow my tremors and aid with pain they are treating as fibromyalgia, but is common with HE. However, I have been having trouble with it interfering with my work and need to drive.
I have begun to have dizzy spells after standing for an extended period of time. This is most likely related to the low heart rate, but it could also be a result of my disease, blood sugars, or my medication.
On a positive note, I was picked up by my husband's insurance during open enrollment. This will mean we will be paying more than last year, but the benefits will be much better. It is also less than what we would be paying if I had stayed with my own private insurance which was going to increase this month.
Other than the dizzy spells, chronic fatigue, muscle and joint pain, arrhythmia's, and roller coastering blood sugars, all is well on this end! I am taking my kids camping this weekend and I turn 34 in two weeks. The holidays are approaching and I still feel blessed amongst my frustration.
