6/13/13

 

Lyme Disability Blues - Beginning the Journey

I highly recommend a journaling of your health history to jog your memory and to help chart your medical history for your application. If like me your memory is heavily impaired - check out diaries if you kept any - and correspondence if you save letters. Anyone beginning this journey ask for all records and lab work and file it. One tends to overestimate the reliability of medical institutions in saving records.

My mom told me that there is Samurai blood in my lineage. Im in sore need of that ancestral courage and discipline at this time in my life. As I wrote in an earlier blog, Jason Mraz has a song which I posted called Thius IS The War Of My Life. And it is the war of and for my life. I call on my ancestors to be my allies.

Back to the saga of my physical health (or lack of)…
 I’m writing this in part because I’m considering trying for disability - at the urging actually of a government employee who works in the field. I’m having a bear of a time trying to remember anything. The claims representative I spoke to is a sweetheart, helpful, encouraging… But I have NO memory. She said to just estimate …  Hahahahahah  !!! 
With how this disease has manifested in me - especially by decimating my memory that’s impossible. Really ! Even thinking of estimating I drew a blank.
My wonderful claims representative (she really is) said just start, you can go back & change things. But I was paralyzed by fear of screwing it up somehow, or , with my spotty memory - making it seem like I was making things up.
I called our local health center so I could get records to help jog my memory. Since my Naturopath estimates I most likely have been bitten multiple times, and have had lyme disease for a long time - I’ve strangely enough felt less worried about my health.
What !?!? 
No, really… For years I had one weird symptom after another and now I at least know why
 I always had the hardest time applying for any help of that kind feeling I should be self-sufficient. Even when I left my first husband, I told him “I will take our child and be responsible for her. Try make a good life for yourself and she’ll always be a part of I…  I didn’t see how a young man could support his own life and that of someone else - another household. We managed. He became a lawyer in Texas. Never did help me out, although I once did ask him if  he would now help me get some schooling so I could make a better living. There was a big silence and a change of subject. He did really help our daughter a lot after she got out of high school though so I’m grateful for that. He died in his fifties of Leukemia and I’m so sorry not to have seen him find love and a close relationship again before he passed over.

So, I called our local health center which I used during my years as a young mom and asked them for my records. The two doctors I saw are no longer there. One is retired. I asked if they still had records. You’d think I was asking them to go on an archeological excavation for prehistoric artifacts. I’m 63 not 103.  When the young woman called me back I was discouraged to hear she could only find 4 pages of what she thought were nurses notes - some of which were illegible.

I explained that I was considering applying for disability and had chronic lyme which had decimated my memory and that I had seen Dr. S who had delivered 2 of my babies. That sparked a personal connection as he had delivered her as well. “Oh maybe you know my sons ?…” etc. I didn’t do it in a calculating way. I’m just friendly and communicative. It sparked her interest and a desire to help, and she called back later saying she’d gone back to the basement of the health center and found 40 pages of records ! 
They’re quite difficult to read in many places and full of errors but there’s still a distinct pattern of anxiety, inability to breathe, insomnia, and painful joints and musculoskeletal pain.  In one place it says “denies migratory pain !  That’s how they record things denies or admits are terms used in the records for when they question you. Jeez Louise !!! I told them visit after visit that the pain traveled from shoulder to elbow to wrist and from one shoulder to another. I called that traveling pain “The Traveling Wilburys” You may remember that was a band with George Harrison Bob Dylan Roy Orbison & Jeff Lynne, Harrison’s co-writer.

It began with swollen painful stiff knees in 1994 and went on to having to have my knees drained several times - the senovial fluid tinged with dark red blood the second time.

It went on to hip and back pain ankle & foot etc. If that’s not migratory pain I’m not sure what is.

I called the Naturopathic Clinic where the Epstein Barr Virus and Fibromyalgia and Chronic Fatigue was diagnosed and the doctor is no longer there. I asked for contact info - called and she had no records from the clinic where I saw her. They had none of her records either. I do have some lab work papers in my own files. The Osteopathic physician I saw Dr. Woodcock from Bennington  is no loner there either. He saw me during the time in which I woke up one morning and couldn’t roll over in bed. I had to roll myself over by pulling on my nightgown and then sitting up and getting up was a slow torment. It just happened one morning and lasted for a long time. That’s why I was referred to the osteopath who gave me a shot in my spine, some adjustments and exercises  but nothing helped. I had to use a cane and I was only in my early forties.
I’ve been taking notes and trying to create a sort of map of my health history which I can then transpose to the application form.
I decided that this morning I am at least going to the application site and filling out my name and basic info. A dear lymey friend urged me to do this. I don’t know why but I’m afraid that being so inept on the computer sometimes I may get caught up in some error/electronic loop. What a wimp I’m being. I’m getting off right now and just starting it !