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.