Friday, April 27, 2012


I woke up. Hands, feet, head, belly. Normal, MS normal. What a blessed relief. Almost felt as good as the smell of the sweetest spring rain. After a month-long bladder and kidney infection; seven days of constipation; and too much, things felt—almost normal.
{side note: normal is not kick up my heels, open my own container of yogurt, pick something off the floor, think a clear thought, go to work, grab a cup of coffee. normal is still pretty darn abnormal}
The morning grew into a pretty good day. I was gifted with a room remodel and now find my hospital bed nestled into a brightly organized room with floors and a window that looks out onto the garden. I have my own TV, and my books and computer are at hand. It was one of those times where I heard myself thinking, "I can do this." If my life is going to be this bed, this room, these dogs, this body and I can get through weeks like these last couple then OK.
A couple days earlier, at two in the morning, after six days of ingesting every evil potion trying to make my seemingly stone-deaf colon listen to my pleas for cooperation I found myself praying for relief. Then, I stopped and thought, "why would the God of the infinite universe be concerned with my poop problems?." I was so utterly miserable and in pain and sleepless and vulnerable. Then I realized that in that moment perched naked on my commode gripping the handrail trying desperately not to fall that He was more present and listening to my prayers than I had ever felt Him. The words from a favorite praise song came to my mind, "Tell me, once again, who I am to You." 
I have a caregiver in the afternoons now. And it is really good. She is kind, professional, and is giving the hubbie and I some much needed help. The kitchen is spiffed, dinner is cooked, and most importantly, I am receiving consistent daily support with my care. She came in after lunch Thursday afternoon and we were busy with meds and exercise. Things felt good.
Do you sense a but? It is coming. Since February we have been working to be on Medicaid so that I can have a caregiver and help with medicines and other expenses. The first hiccup is the monthly cost: over $700. But, somehow we shaved and cut and trimmed and made a plan to do it. It is an endless battle of phone calls to a faceless bureaucratic spiderweb that twists and tangles to the point that a former grant administrator and a current auditor can't untangle what it takes to be a participant. Thursday afternoon I found out that we were told incorrectly and one of our largest expenses is not covered. Just like that. No Medicaid. No options. No caregiver. Well, maybe no caregiver.
I never give up. I am a fighter. I closed out my day by turning off the phone, trying to breath, curling up with the hubbie. Can't I have more than a few hours of only abnormal?

Thursday, April 19, 2012

I Think; I Think: I think

MS is eating my brain. Now isn't that a cheery thing to think about. That ugly bit of truth is always niggling at the corners of my reality. Most people see the physical price of the disease; the gimpy feet, the lack of energy, the wheelchair, the catheter. But, all of that is nothing compared to what is going on inside our skulls.

My first exposure to the grim reality was about 12 years ago at an MS lecture by a researcher discussing Copaxone's early study results. He showed MRI pictures of MS brains with what he blithely termed 'black holes.' Big dark areas that MS had bored into the brains of patients. I am sure the lecturer went into further detail, but I just sat their stunned. That was my brain, on some future day, up on those screens, and it wasn't pretty. I hadn't known.
That Spring, at the local MS walk, my hubbie and I met a couple where the reality of these black holes became all too real. The woman was my age, and also used a wheel chair, but she had the mannerisms, speech, and affect of a young child. It was chilling. Another chilling glimpse down the rabbit hole.
It turns out that Copaxone {the daily injectable med that I've taken for 12 years} wields a big club in the fight. Some studies show that it slows or arrests the brain deterioration. I have only missed a handful of doses in these many years trying to keep the darkness at bay.
What then is cognitive impairment? Since my December crash I've mentioned that I've notice how much worse my own has become. The MS society lists these as the most common effects: (they tend to be rather pollyanna and leave out some of the grimmer things like losing control of inhibitions, and personality changes that I don't seem to have yet, thank God)

  • Memory (acquiring, retaining, and retrieving new information)
  • Attention and concentration (particularly divided attention)
  • Information processing (dealing with information gathered by the five senses)
  • Executive functions (planning and prioritizing)
  • Visuospatial functions (visual perception and constructional abilities)
  • Verbal fluency (word-finding)
Certain functions are likely to remain intact:
  • General intellect
  • Long-term (remote) memory
  • Conversational skill
  • Reading comprehension
What this means in my day to day life are episodes like:
  • writing the answer to a New York Times crossword clue in the wrong boxes, and not being able to figure out where the mistake is.
  • sitting with the Hubbie, making a To Do list at 7am and when we check in at noon, having no memory of making the list. No recall at all.
  • I can no longer remember who the characters are in books, "Joe walked into the room," leads to flipping back through pages trying to figure out who the heck Joe is. 
  • Not being able to follow the simplest of directions or recipes. Put 1/4 cup of sugar in a separate bowl...turn to the measuring cups, can't remember what size...go back to the recipe...can't remember what item I was on...sugar or flour...oh, flour is in the, a 1/4 cup...back to the drawer...still don't know the size...sigh.
  • If the TV is on and people talk I can't process either one. At all. Ever. It is like word scrambled eggs in my brain. 
The oddest thing is I am as smart and personable and funny and outgoing as ever. Yet, I feel locked in a box made of sticky taffy. People look at me baffled when I try to explain or they forget or they ignore it all together. Cognition isn't personality or intelligence. It is brain function and the slow deterioration of mine is making me crazy.

Wednesday, April 11, 2012


When I was a girl, on particularly hot summer days, I loved to swim below the surface of a lake, almost deep enough for my back to touch the bottom, then flop over and stare up at the crazily distorted view. The light would reach down through the murk and spread out through the grey-green bits and seem to reach for me, pulling me back to the surface. It was so tempting to stay cocooned in the silent murky depths. When my need for oxygen would overcome the pull of this mysterious world I would float slowly to the surface and let the harshness of the sun and bright sky break across my face. Always, the pull of the water called me back underneath.
This past month has felt much like this. I don't know if it is the depression speaking louder than usual or the grinding nerve pain or the ongoing battle to take care of my basic needs or the long hours I am alone every day or the cognitive losses that are piling up or the never-ending battles with doctors or the toll this takes on my hubbie or this or that or the other thing. But it is all too much right now.
I think you have to have had a major tragedy or a chronic illness or poverty to really understand how alone one is with these things. At the end of the day, even with the many people who so graciously give of their time, love, and care, I am facing this monstrous reality alone. It is hard to say this, because I don't want for one second for anyone in my circle to think I don't appreciate them, but cold hard truth is: everyone else has to live their own lives and should. From friends and family with their own struggles, mortgages, kids, joys and sorrow to byzantine bureaucracies that ask more of me than I think I can give.
I haven't written in some time because I feel some social obligation to be appreciative of what I have. I don't want to offend. I do have much to be grateful for. To be blunt, I just don't know how much longer I can keep life and limb together.
And, I really don't have any choice but to figure something out. I do know that in order to keep writing this blog I have to have the freedom to be honest. So, if mucking around in the murky end of the pond isn't your cup of tea, I truly understand, most of the time, I'd rather not be here either.