After six years, one would think dreams about my beloved career as an administrator of a science research unit would fade. But, a couple nights ago, the siren song of dreams beckoned. In it, a colleague phoned and asked me to lunch. Once I arrived it was to find a panel of faculty; some I knew and some new to me. The purpose of the lunch was to ask me to return to work to lead the administrative efforts for a new institute. I smiled politely, feeling my usual mix of frustration and invisibility when someone means well but doesn't seem to see “ME.” {That is the wheelchair, the chronic pain, the cognitive decline, the shortened life span, and all that goes with progressive forms of MS} As is the nature of dreams every obstacle I raised was met with well-thought out answers, "we have already spoken to your doctors and arranged your schedule to work from home," "we are hiring an executive assistant to be your eyes and ears," "we don't want what your body can do, just the knowledge and skills that you possess." The overriding theme was that they first saw me as a person with valuable skills and abilities and second as a sick disabled woman whose needs could be managed by administrative steps.
Reality is a much different kettle of fish. More and more I am seen and treated as a rather child-like marginalized patient who needs to be told how to live. If I mention to a receptionist to repeat details due to my cognitive issues they often switch to a sing song voice and baby talk. Yesterday, at the 11th hour, I cancelled a visit with an elder from my church who I have not met. I apologized for the last minute, said afternoons are tough for me, and that my aide would call him back to reschedule because I have trouble with dates. In what I heard as a condescending voice, he replied, "Let's not forget to take my schedule into account too!"
Yes let us not forget. That what a well person can do in seconds takes me hours. That a 45 minute trip to the grocery lands me in bed for 3 hours. That all the time, every minute, my arms burn and ache and every movement makes it that much worse. That I can no longer follow simple recipes, write down phone numbers, or remember that you called.
Most of all, let us not forget that all of the layers of challenge that MS has layered on hasn't changed my personality or my professional knowledge or my social graces.
Too bad I can't go back to work, but then that was just a dream.
Thursday, August 29, 2013
Friday, August 9, 2013
Update after almost 6 months of Silence
This year is about hunkering down and surviving (maybe I should change my name to Katrina?).
Since February, when I was hospitalized for a major MS exacerbation that included kidney failure, tanked sodium and potassium and the resulting brain and body firestorm, I have fought and continue to face major challenges.
Here is a summary and an update for those who have wondered, and emailed, and prayed for my recovery.
I'll start with what started it all, surgery last October to address neurogenic bladder and bowel. I now have had a second surgery to re-site the stoma on my abdomen for the urostomy bag. It still isn't working quite right and, unbelievably, a third surgery is a possibility.
Physically, MS is taking an aggressive stance. In the past nine months, I've lost another chunk of function on my right side and can no longer transfer independently. Fatigue is a raging beast while nerve pain is its invisible twin lurking in the background. I have a nerve-pain syndrome in my arms that stretches from bicep to finger tip, I call it debutante pain since it mirrors the ubiquitous white gloves. The pain is burning and squeezing and constant. Any use of my hands or arms increases the pain. So the activities that bring me joy; reading books, writing, crafting, also bring severe pain. Quite the conundrum.
I have stabilized the weight loss. The diagnosis of neurogenic stomach was made through a process of elimination and food is something I do like taking pills or brushing my teeth. But, an excellent medical dietitian taught us how to get in enough calories to stop the precipitous weight drop. Cross my fingers that I can keep this one thing under control.
Another area that is taking a big hit is cognition. MS is a brutal task master in this area. I have had regular cognitive work ups for the past 13 years. This past December showed acceleration in several areas and marked increase in an area that was clear before. This was before the sodium-drained brain fry in February. And this and that drug for this and that affliction. I can't seem to read much beyond the simplest books. I lose the threads on the simplest things. If one more person laughs it off as 'middle-aged' I can't promise I will stop screaming.
My world is reduced is to my home, my hospital bed, a few dear friends, and family. Hopefully as I claw my way past this last surgery (please, please, be the last hospitalization for awhile), I can start to build and find a little more joy in the day to day. That is my goal for now.
My fabulous son moved across the country and up the highway by about two hours. If nothing else will make me smile. Tonight at the train station, that should.
Since February, when I was hospitalized for a major MS exacerbation that included kidney failure, tanked sodium and potassium and the resulting brain and body firestorm, I have fought and continue to face major challenges.
Here is a summary and an update for those who have wondered, and emailed, and prayed for my recovery.
I'll start with what started it all, surgery last October to address neurogenic bladder and bowel. I now have had a second surgery to re-site the stoma on my abdomen for the urostomy bag. It still isn't working quite right and, unbelievably, a third surgery is a possibility.
Physically, MS is taking an aggressive stance. In the past nine months, I've lost another chunk of function on my right side and can no longer transfer independently. Fatigue is a raging beast while nerve pain is its invisible twin lurking in the background. I have a nerve-pain syndrome in my arms that stretches from bicep to finger tip, I call it debutante pain since it mirrors the ubiquitous white gloves. The pain is burning and squeezing and constant. Any use of my hands or arms increases the pain. So the activities that bring me joy; reading books, writing, crafting, also bring severe pain. Quite the conundrum.
I have stabilized the weight loss. The diagnosis of neurogenic stomach was made through a process of elimination and food is something I do like taking pills or brushing my teeth. But, an excellent medical dietitian taught us how to get in enough calories to stop the precipitous weight drop. Cross my fingers that I can keep this one thing under control.
Another area that is taking a big hit is cognition. MS is a brutal task master in this area. I have had regular cognitive work ups for the past 13 years. This past December showed acceleration in several areas and marked increase in an area that was clear before. This was before the sodium-drained brain fry in February. And this and that drug for this and that affliction. I can't seem to read much beyond the simplest books. I lose the threads on the simplest things. If one more person laughs it off as 'middle-aged' I can't promise I will stop screaming.
My world is reduced is to my home, my hospital bed, a few dear friends, and family. Hopefully as I claw my way past this last surgery (please, please, be the last hospitalization for awhile), I can start to build and find a little more joy in the day to day. That is my goal for now.
My fabulous son moved across the country and up the highway by about two hours. If nothing else will make me smile. Tonight at the train station, that should.
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