I hadn’t realized how Hurricane Sandy affected me. I thought I had sailed through the chaos unscathed, considered myself quite lucky. But, six months later, I had gained a lot of weight. After all, I rationalized that, I deserved to pamper myself with ice cream, cake and cookies. I was quite fearful and was still crying at the drop of a hat and needed comfort food. I think I was clinically depressed.

I was getting huge and worse, my progress was at a plateau. I was withdrawing more and more. I had to do something! A friend suggested a book about controlling blood sugar through diet and exercise. Although, the book pertained to diabetes, it made a lot sense regarding my efforts to re-grow the myelin on my nerves. It gave me a direction. Immediately, I swore off all processed foods, sugar, juices, sodas, and white and whole wheat flour. I bought chia seeds, nuts, quinoa, flaxseed meal, berries, steel cut oatmeal and stevia sweetener. I concentrated on what I should eat, not what I shouldn’t eat. Concentrating on a high protein and complex carb diet, I began losing weight immediately. But the amazing element was: my neural pathways were connecting at a greater pace. I was building muscle faster and stronger. My physical therapist noticed the change at the onset, asking me what I had done to make such a noticeable change in my recovery. I bumped up the amount of fish oil I was taking, added a time released B-12, and tripled the dose of vitamin C and water, water, water. A year and a half later, it is still working for me. My left leg which several doctors told me may never again work – is awake! The myelin is growing back and I am concentrating on strengthening the muscles as they begin to neural fire. For the past four years, these muscles did not get the message to move and they are like wet linguini but, the muscles are there and getting stronger. For me, this was an immense turning point in my recovery.

During the months at the sub-acute facility, one of my physical therapists introduced me to Russian stim. This is a high frequency electrical charge which is administered by electrodes to my muscles. The electrical charge makes my muscles contract a bit. This is not the tens stim which is used for pain; this is much stronger. We started out using the stim at the facility at its maximum strength on my legs. After I left the sub-acute, a dear friend gave me a smaller, portable version which I continue to use. My current pt advises me where to place the electrodes to benefit the area I am currently concentrating on. I have used it on my back and gluts as well. It is easy to stim while watching tv and I think it has helped.

One of the other best suggestions that I followed through on, was to get a good physiatrist. At some point, I realized I wasn’t necessarily a sick person but, a recovering person. I didn’t need a neurologist who shook his head in verification of Guillain Barre. I knew what I had. I needed people to help me get stronger. I needed someone to get me the correct braces and wheelchair, work with my pt to move me to the next stage in gaining strength. I switched my mindset from victim to athlete. This sport required me to focus on obtaining goals every day, every week, etc. I taught myself to mediate in order to relieve the stress during my plateaus and renew my priorities.

I left the hospital with a device to blow into (it has a long complicated name, I call it something else), moving a little ball to strengthen my lungs. Well, it was gathering a lot of dust and most of the time, I couldn’t tell you where it was. My pt kept urging me to get it out and USE it. I hate that thing. Last Christmas, I asked for an inexpensive flute. I am not trained to play the flute but the fingering charts are on the internet as well as enough sheet music to keep me satisfied. In playing the flute, I must sit up and use my lungs. This is not about the music for me; it has certainly helped my trunk strengthening. Although it is hard to hold up that flute and get out those notes, it is more fun than that contraption the hospital made me take home.

After my arms were paralyzed and my hands were just waking up, my fingers were too shaky to type on the keyboard of the computer but, against all logic, I could draw. It wasn’t great but, for some reason my hand with a pencil in it made it steady. The more I drew the better and easier it got. Several months later, I had complete control of my arms, hands and fingers. I have always painted with oils but when I got sick, I was advised by several very knowledgeable people to give them up. I had painted with acrylics before and knew I hated them. I never painted with watercolor and didn’t know how. I fought with both these mediums until I am finally getting more comfortable with them. The “Daisies” painting was my first success with painting with acrylics. This is a large painting which made me sit up, stretch and reach up – it was fun therapy. The white of the petals are washed out this photo, there is actually more depth in the original and I learned to “like” acrylics.

The main theme of this entry is, to keep working at this. I have been told too many times by too many “professionals” that, most people with Guillain Barre as bad as I have it, give up. Give up?! Oh yeah, what then? Hope I don’t get worse? Or, should I just sit around and wait to die? Yes, I hate it that, I can no longer run on the beach or go skiing or walk up steps. I need to use what I have at the moment, try to do something I didn’t think I could do, learn new things and be flexible. This is a long, hard struggle but, what seemed impossible to accomplish last year is easy this year. In the beginning, I couldn’t wait to be able to go to the bathroom on my own; it seemed almost unachievable. Now, I can do that with ease plus vacuum the house, do laundry and the dishes, cook and take care of myself for the most part. Be creative; learn something new and reinvent a new you.