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.

Minute to Minute

One thing that I have learned over the last week is that life changes on a dime. Alright, we all knew that already...and I certainly saw that the day I went into the hospital. To clarify, "MY" life changes on a dime. This illness is volatile and keeps me on my toes. The way that my brain talks to my body is random. The way my body responds is as well. I can be walking down the hall, and then my brain forgets to tell my feet to move. Or my brain misfires, my equilibrium is off, and I bounce through the doorway and off the walls like a pinball machine. I try to use my hands, and I look like I am going through withdrawals. This part I handle with humor.

My blood sugars are still unstable which is making my insulin intake difficult. My thyroid levels fluctuate, which is messing up digestion, metabolism, heart rate, and blood pressure. Even my body temperature is goofey. One minute, I will feel strong...and the next, I barely have the energy to breathe. This is where I get frustrated. It is hard to make plans and be part of the world when you do not know how you will feel in five minutes.

I attended a funeral today that reinstated what I have been feeling in my heart over the last few months. It was a good reminder. We are lucky to have EACH minute, no matter what they look like. We have an opportunity to be blessed and to bless others with each breath that we take. Quit looking at the future and horizon if it means you have to take your eye off the present! Don't let guilt and other's expectations prevent you from living a life that makes you happy. Love others...and allow them to love you back! Lastly, my friend Art sent me an email that classically stated,"Even when I am in pain...I don't have to be one!" Haahaa I love it.

P.S. Jim Hatch...you have been able to make me smile since I was a little girl! I love hearing from you.

P.S.S. Karen...Thank you for your support and the support you give to Glenda.

Life back home

As many of you know, John and I have been back to town and re-engaged in our lives for over a week now. We were both physically, mentally, and emotionally exhausted. We had the weekend to rest and settle in before returning to work. Yes, we both returned to work on Monday.

I returned to the office to learn that my computer had a virus. I was comforted at the thought of doing some work from home, until I learned that the brief electrical storm that hit while we were gone, fried the modem at our house. I also had a new employee start on Monday who needed to be trained, and a brand new data base to learn. Friday, we woke up to the fact that our well was out of order. This was just before my 10 year old woke up with a bloody nose. How do you clean the floor, sheets, clothes, and child without water? Both wells (water and the faucet we called a nose) were resolved early in the day. We ended the day with my 8 year old in tears because his prize chicken had been mauled! Apparently, this is not what the doctor meant by "no stress."

So how does all of this factor in to encephalopathy? I had made great progress and was slowly regaining my energy. I had been able to stop taking my NPH insulin (daily long lasting), and had gone a week without needing my slide-scale insulin (the insulin that I take with meals as needed.) We staged down from 50mg of steroids to 40mg. I had muscle and joint pain, as well as some swelling and headaches. But this was much milder than I had anticipated. Unfortunately, despite taking two days to just rest, the stress and fatigue had caught up to me by Sunday. My entire body felt exhausted in a way that is hard to explain. Apparently, my pancreas was tired as well. My blood sugars soared near 300 which is the highest they have been. The tremors in my hands grew stronger, I am having scattered muscle spasms, swelling and weakness.

I am still waiting for the reports from the Mayo Clinic so that I can meet with a rheumatologist. We are praying that the report arrives in the next few days and that I will meet with the doctor next week. While the immune-suppressant drugs are scary and the risks of complications are so high for me, I am prayerful that they will be the answer to these set backs that I experience when life occurs.

One of the many lessons that I have learned over the last couple of months is how little control we have over our lives and circumstances. The harder we try to hold on to the reigns, the worse things become. While I may not understand why we are facing this illness, I do know that there is a purpose. I also have faith that the Lord will see us through and hold our hand until the end. This doesn't mean that we are not scared or that it isn't difficult. To be honest, if it were not for the two sweet angels I am blessed and honored to parent, I would curl up in the fetal position and refuse to get out of bed most days. That just is not an option. And for those who know me also know that just is not my style. I can get through each day by taking it one at a time...but sometimes I am grumpy! Sometimes I throw pity parties when I realize that I have lost my cheek bones but gained three chins. Then I remember that I am blessed and many people face worse circumstances.