Friday, February 19, 2010

A Neurological Mess
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Where do you go from here? All day as I laid on the couch and tried to recouperate from yesterday these words kept sounding out in my head....A NEUROLOGICAL MESS.... My new Neurologist told me this yesterday. In his view point I have Parkinson's, Epilepcy, Sleep Apnea, Movement Disorder Problems, along with type 2 diabetes and blood pressure problems, not to mention the Arthritis and bone spurs .The left side of my brain is blocking the right sides sparking and so on. He is a thirty year veteran in Neurology and most of that has been as a department head and he let me know up front he will probably refer me to someone else because I am over his head in problems.  I smiled and listened to what he said and I thought to myself.  Here we go again eleven doctors in five years.  Am I getting anywhere?  The advantage of this is, you become very good at judging quality. You see the newest of technology and your time becomes their time. There are some days I pray for no more doctor visits, no more runs to the pharmacy, no more illness...just quiet.

But then I return home and one of my kids has read my blog and posted a comment.  Someone has called and ask for help or information. Someone needed cheering up and I was able to make them laugh and everything bad seems to drift away to some unknown place. Me dealing with these diseases is not normal or maybe I am not normal.  My only concern now is please keep we walking. Fatigue is around every corner and depression could be his companion. Pills are my enemy in numbers and kinds. I look at them and try everything I can think of to get them down. Applesauce and cottage cheese seem to be the latest method I have.  I take a tablespoon of food with as many pills as I can put in there and swallow.  I am just trying to trick my brain into thinking no pills are in there.Most of the time it works This is where I am now, trying to trick my own brain into letting me live happily.

The better part is, there has become something so much more special in my life..For one my grandchildren sparkle on all sides. One is my grandson Ayden . He is rapidly passing me in motor skills and intelligence, but when he is with me he always keeps an eye on me and never puts me down.and if things get out of hand he will just come over and give me an unsolicited hug and kiss. You see he can crawl and run and I cannot.  He can lay and play on the floor, I cannot.  He has fine motor skills to open things and I have none.  But we have an unsurpassed love between us that all those diseases have not touched and the Neurological Mess makes no difference.

Where do I go from here, who knows. More advocacy work. More prayer for some cures. More letting people see me and realize my worth. Every patient who stays in the public eye keeps a thought of that disease in the mind of someone else. Every doctors visit I make and endure may keep my grandson from having to go to a doctor for this.  I don't know why I'm so blessed with all this but I believe it is to touch peoples lives and help find these cures. The only way I can help is through experience. I know first hand and therefore I can get on a "one on one" level to understand and help with the problems. No one has looked at disease this way. It has always been take a pill and come back if it doesn't get better and I'll give you another pill. After several kinds of pills the patient gets worse or better.  Better is fine, worse they give them more pills and usually pain takes over. This opens new doors to new pills and new symptoms and we are off into the crazy world of medicating illness, especially chronic illness. I will fight my Mess as long as I can and write all I can to save someone from ever having to join me in this Pokie

1 comment:

Anonymous said...

hi charlene,I'm Patty de Chile, remenbers,in the face book?
Sorry my english is bat,I woould like us to keep in contac,please I'mpatient of Parkinson 11 years,have 52.
Tell me abaout your disease
Concepcion CHILE

Today With PokieToo and Parkinson's and Acute RA Disease