Friday, April 13, 2012
I have always considered Friday the 13th lucky. Had the best times going out in my 20's and 30's on Friday the 13th. Today I had an appointment with my specialist. I woke up and was not happy. I have been deteriorating. No one wants to talk about it, even me but I see the restriction in my movement and have begun feeling weaker in my left leg and my right hand. I didn't want to go because unless it's something wildly experimental with side effects like blindness, stroke and death, I am always told there is nothing you can do but try to live a healthy lifestyle. I am lucky to live and work in the NYC metro area as I have access to excellent care. I have been being seen by one of the best specialists in the world (literally) for my condition. However, last time I saw him he was pushing the drug trials and not acknowledging my acupuncture or zumba or my wish to continue to dress the way I want (ok kitten heels now) He had a fellow that I had seen for two years. She understood that there was more to me than disease, that I had to keep what made Suze Suze, like my clothing, my heels, my life. And everything that happened wasn't always the disease or condition. She has started to practice there so I switched.
She has always encouraged the Zumba. Well, guess what I found out today? Almost 4 years into this hellish journey. If I exercise regularly, like every single day, and keep on walking as much as possible, I can slow this thing down. I can still build muscle even in the bad areas because I still have muscle there even though it's very very weak. It was something that I had felt instinctually but she said it. She said I had to! Why wasn't someone so clear 4 years ago? And believe me, I have seen all kinds of doctors and specialists. Their take, stay healthy and you are doing so much better than so many other people and for you it's mild. Please don't get me wrong I am very grateful. Some of the original thoughts were cancer, brain tumours even advanced syphilis (lol!) And as to mild, it's easy for them to say. I used to easily walk a 15 minute mile! Last Friday I was struggling to walk in my own home.
I am glad to have my instincts validated and will work like hell to save myself.
Another good thing, I can participate in a study but this one isn't about drugs. It's just to establish what this does to people. It will help advance science. What's wonderful is I will get a free MRI. I need one and my insurance really doesn't cover it. It took me two years to pay off the diagnosis. And I'll get a blood test. My insurance doesn't cover all my bloods anymore. And they'll pay me for my time. How good is that?
I know SP is going to be vital in my recovery. Yes, I am using that word because now I know that I really can, I really will get stronger.
I have great tools here to help me. I love the exercise videos and tips. And then there are all of you who have sent me such strong messages of support.
I am grateful and I am having a wonderful day.