Coup

I have not written here in a long time, and that is because I have been busy trying to fight back the coup that my body is staging against me. Apparently it does not appreciate the governmental system of my body, but since this is not a democracy but a monarchy (I am the Queen in charge of this vessel) it is just going to have to deal. Since October 23 I have spent 22 days total inpatient in two different hospitals and countless days undergoing outpatient testing. So far I have received the brilliant diagnoses of malnutrition and failure to thrive, which I believe are a given since I have lost over 25% of my body weight since October 23 and certainly can not intake enough of anything to get the nutrition I need. However, without a cause that is clearly defined on their testing (and dysautonomia does not cooperate like that) the doctors refuse to do anything other than monitor the weight loss and provide some supplements. I am also going to be receiving PT and OT services since the malnutrition triggered rapid, progressive muscle weakness and worsened the ataxia. My two new escorts are my wheelie walker for very short distances (about 100 feet or less) and my wheelchair for anything longer than that. I think they sent over a child sized wheel chair because while the seat is perfect, the leg supports are too short if I put my legs up any higher than down at 90 degrees (which is uncomfortable) even on their longest extension. So my wheels need some adjusting (also, a seatbelt would be helpful to keep me from falling out of the darn thing, especially when other people are driving it). I have not been able to teach since October 22, and I miss my kids beyond what words can describe. I knew that I wanted to teach special education since I was in sixth grade, so for me it is not a job so much as a dream and a purpose. To not be able to do so right now is frustrating and disheartening and painful. I want to be there with my kids, celebrating each victory and encouraging them to go beyond all expectations set for them and being creative until I find a way that works to teach and provide the information as well as allow them to communicate understanding. I detest being stuck at home (literally since I can not get down or back up the stairs), primarily in bed. I would most likely throw my TV out the window if I could do so as I by nature am not a huge TV fan (I happily went all summer without access to a TV) and after two months of this I have far surpassed my tolerance for it. I normally can not go more than a day or so without getting outside, yet I have been outside once since December 12 and that was for the ambulance ride home- stir crazy? I can only tolerate foods that are totally smooth and pureed, which means I never want to see or eat another mashed potato as long as I live once I am better, nor do I want to look at infant rice cereal. I can, however, offer recommendations on stages 1 and 2 infant food which is an odd skill to have. I am working with my home health care nurse to arrange for me to travel to where my family is while I recover, for accessibility reasons (I swear this house is trying to kill me - throw rugs, a bathroom that the walker only fits into sideways, hallways too small for a wheelchair, those stairs), safety reasons (probably not a good idea to leave a somewhat fall prone klutz with a walker home alone all day), and my willingness to ask for help (I live with amazing friends, but I hate asking for help and would rather go without or risk hurting myself than be a bother). So it looks like within the next week I will be home, surounded by my family and constantly having to remind them that medicine has never found nagging to be a cure for anything. :)
Anyway, I have not forgotten this journal but I have been engaged in medical combat with a firmly entrenched resistance force. I do have a CaringBridge journal that I started to help keep my family and friends updated, especially while I was in the hospital but I am continuing it. The address is http://www.caringbridge.org/visit/bethanysummer if you want to check that out in between entries here.
May 2009 bring us all health, safety, joy, providence, and abundant love!