I have no memory of getting sick other than the horrible pain I had in both my feet for many months. The memories I do have are very vague, dreamlike, and extremely odd. I was on a ventilator for months then as far as I know right in to physical therapy. My fiance and family seem to have faint, blurred memories of this first part of my diagnosis and start of recovery. I was in a great rehab hospital for 6 months remembering only bits and pieces but definitely remembering the pain. I am, unfortunately, covered by medicaid in Texas and in March of 2012 was moved to a nursing/rehab facility. I never had physical therapy the entire 6 months I was in the nursing home. My muscles and tendons became stiff and I was only able to get myself home after my 15 year old daughter discovered a youtube video on how to use a slide board. I had to sneak the one slide board the home had into my room and with the help of a few loving and caring aids I learned how to move myself from chair to bed to toilet. I will say that I am still waking every morning peeking out from under my covers to make sure I am at home and not in my horribly beaten up nursing home room. My nursing home experience is another story best left for a longer post at a time it does not make me cry and paranoid.
I have been home..after demanding that I return home..since Sept.7, 2012. I've had only a few rounds of physical therapy due to my insurance refusal to approve more therapy. It's been a year long battle with insurance and lack of proper office diligence from my doctor to get any kind of therapy. I'm obviously very frustrated, terrified, and depressed that I am not one of the success stories of GBS.
I have so many questions I don't know where to start. At this point in time I am able to stand with a walker but, I stand on my tippy-toes. My legs are stiff at the knees and my ankles only bend downward. I've had a great deal of pain in my legs and hands but this past few weeks, especially this past week the pain in my legs is getting unbearable. My heart races and I feel panicked because I can find no way to stop the pain. And, it's difficult to describe. Somewhat between an ache and burning. To help ease the pain after taking my usual meds, I sit Indian style, legs crossed, on a heating pad leaning forward on my elbows. It seems a rather odd position but it tends to cut off the circulation a bit easing the pain and pressure. I do this for an hour or two just to be able to function the rest of the day. I despise sounding like a wimp. I have a doctors appointment this coming week but I'm feeling very uneasy about getting any results. I'm at the point of desperation. I can't resign myself to such horrible unending pain. I'm very scared.
I am a mother of two girls, one with several disabilities and care for my 80 year old mother, who, uses a walker..quite well at the moment. Are there advocates who help patients like me get through insurance problems and red tape, try to find a better plan, a better way to live and recover? What are the commonly prescribed medications to get through this kind of pain? Or, is this worsening pain normal during recovery? Also, I am slowly recovering the feeling in both of my hands but they seem even more stiff and painful than before. They are difficult to control. Can this be considered normal?
Please, any advice?