The Waltz:one step forward, two steps back

I had planned on updating our blog once a week, but life threw a monkey wrench into my plans this week. Thank you for your patience!

The mailman brought me a large white envelope Aug. 17th with the words "Mayo Clinic" on the top. Inside was the full report compiled by the head neurologist. In the report, he states that he considers me to be in remission. Those words should be comforting, except that I am not symptom free. If we accept that I am in remission, then we have to accept that there was permanent residual damage from my last episode. It would also tell us that residual damage could be expected with each relapse. This left a sour taste in my mouth, but it was not the hardest part of the week.

After a full week of activities, Friday morning, my body was very tired! I didn't feel well when I woke up, and my blood sugars spiked mid-day. That evening, I was sitting at a friend's baby shower and I began to shake. The myoclonic jerks (similar to Parkinson's shakes) started back up. A friend helped me to the car so I could get home, but not before busting into tears. I have some amazing friends who were strong for me when I needed it, but I admit to feeling guilty about being a distraction.

By the time I made it home, the jerks were at full force. After consulting with my doctors, we all agreed that I did not have a strong enough immune system to subject myself to an emergency room or hospital. They increased my steroids to 60mg per day, which is higher than when I left the hospital last month. I was put back on bedrest for the weekend. The myoclonic jerks stopped by the morning, but now I am dealing with the aftermath of the inflammation. The disconnect with my feet and organs is presenting challenges.

The rheumatologist has been conferenced on my Care Plan and I am waiting to hear from them about when we will start the immune suppressant therapy. If I can relapse while still on a high level of steroids, then the chance of being able to come completely off the steroids is not likely without the immune suppressant therapy.