CallaFirestormBW -> RE: Health issues beyond play (8/11/2008 12:12:52 PM)
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I have myriad issues related to a progressive, congenital mis-wiring of my immune system. Some of these issues result in mobility challenges and chronic, unremitting pain. Because the pain is neurological and systemic, in order to be able to continue to function, I have to choose to 'push through'. While there are treatments for chronic pain that can address localized pain (like low back or shoulder pain) with injections or local/intrathecal anesthetics, those are not useful when the entire neural net is involved. In addition, the disease manifests with skin problems (intractable neurodermatitis), problems swallowing, horrific short-term spasticity, and some memory-related and MS-type symptoms. In addition, the medications that are most often used to treat include heavy oral and injected corticosteroids, interferons, immune suppressants/modulators, etc., which have had an impact on my heart, my weight/metabolism, and my kidneys. For me, this means that some days, I am just plain -wiped out-. My first focus is on the responsibilities that I have committed to. I have a full-time job, and unless I am unable to move, I get myself up in the morning and go to work. Even when it is exhausting, I get a lot of satisfaction from continuing to be a productive member of the community despite my challenges. The company that I work for has been great about assisting with modifications where they can, which definitely helps. My Darling loves long shopping trips -- going out shoe shopping or wandering through town or the mall -- not necessarily buying, but just wandering around looking at things. It is frustrating for both of us that this is something I can no longer do with her -- on the positive side, our two grown girls have replaced me as the "Drag Darling Out Shopping Squad". She also loves to dance -- one thing I hope for is that at least one of the servants that we bring on board with us likes to dance and will be able to escort my Darling back onto the dance floor. For me, I can no longer kneel or get up from the floor, so scrubbing floors is non-existant for me (also things like scrubbing out the bathtub with the intricacy that I prefer -- you know... toothbrushes in the corners and all of that). I can also no longer stand for hours for the intricate pastry work that I used to do -- no matter how much I love it, after about 30 minutes, the pain becomes just way too much. Yes -- it impacts everything... but in the end, I get to choose whether or not I let something like this determine whether or not I am happy. Maybe, because I've lived with this my entire life, it becomes like a challenge to me to figure out how to defy all the predictions and have an incredible life... but that's my goal -- to keep myself, even when my body tries to define me. Calla Firestorm
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