I believe the most painful time we experience after a life changing event is the moment it gets quiet. The friends and the chaos that first surround you disappear. You wake to the betrayal that the world kept turning and people kept living their lives. I remember the feeling of being overwhelmed by those who surrounded me, mystified at their ability to laugh and smile. I was trapped inside a rogue body that hurt physically and emotionally. I didn't recognize myself and retracted from my life. I didn't want to be seen, but felt hurt by the absence of my loved ones. It was a crazy time...I was crazy.
That was about three years ago. After being diagnosed with Hashimoto's Encephalopathy, I was admitted to the hospital and started on high dose IV steroids. Within three days, I had steroid induced diabetes and was insulin dependant. I went home on high dose prednisone which is the standard treatment. After three months, I had gone up four dress sizes, I had to start treatment for the bleaching of my bones, my ulcers had flared, had insomnia and many other complications from the steroids that changed who I was and how I thought. My doctors referred me to the Mayo Clinic for other treatment options because they were convinced the steroids were going to kill me before HE did.
I found the answer to the steroids in immune suppressive therapy. While not ideal this treatment allowed me to slowly return to my life. I was able to attend my daughter's choir concerts and my son's baseball games and practices. I was able to be present in my own life enough that I renewed old friendships and found new ones. I took up new hobbies and began exercising again. I even committed to running a half marathon in Las Vegas. It has been a roller coaster ride of promise and threat since then, but the one thing I stood firm about was that I would not return to the person I was while on prednisone. I would rather face illness than the darkness that time brought.
Back in May, I began to faint and have dizzy spells. While undergoing tests at a Cardiologist's office, I had my first relapse in six months. The positive note is that we learned a great deal. My heart skips beats due to a miscue from my brain. Then I get an adrenaline dump which increases my pulse. To compensate, the vessels dilate to drop my blood pressure. Since my base line BP is already low, I faint. My neurologist confirmed on Friday that this is all autonomic neuropathy. Blah blah blah...what this means is that they put me on medication to keep my blood pressure higher than usual so that when an episode happens, I keep enough blood going to my brain (always a good thing!)
Here is the catch, the medicine is a steroid. While cleaner than prednisone and a much milder dose, it still comes with insomnia, muscle pain and joint pain, immune suppression, and this week I have had to restart monitoring my blood sugars. We will know in a couple of weeks if I will have to return to insulin. Fear that the fatigue of a half marathon and traveling will create problems, I have withdrawn from the Vegas race. I was also informed that I should count my blessings that I am still allowed to drive. I am feeling a little overwhelmed...so I did what any super bummed woman should do! I signed up for a 5K obstacle race and a painting class that will really test my lack of fine motor skills!
