My Own Private War

Doctors....my interaction with my neuro this morning made me feel so powerless and alone that the rage is simmering like rice cooking at a bit too high of a temp with spits and sputters of steam escaping under the lid. Since the "big exacerbation of '11" I've had these horrendous headaches. Way worse than any before. Focused on the right side of my head. Simply the worst. Then, last week, over Thursday, Friday, and Saturday, the head pain kicked into a whole new stratosphere. It was as if some living breathing entity had taken up residency behind my eye. Deep lancing stabbing pain. Pain so intense that my belly would roil and I would vomit. 
One aspect of my symptoms could be described as light and sound sensitivity. It sounds oh so very Victorian ladyesque. One just needs to lay a cool cloth over ones face, stretch out on the divan, and the vapors will pass. Instead it is more like the slightest noises, keyboard taps, chewing, dog nails on plywood, fans whirring translate through my scrambled egg brain into a cacophony of white noise that slowly builds until I can't hear, can't reason, can't think. At the same time the light left on in the hall or the glow around the blinds chips away at the walls I construct to keep out the pain marauders. Maybe that is the best way to explain. Think of the second Tolkien book and the battle at Helm's Deep.  Sounds are orcs, and lights are cave trolls, and pain is one of the bigger creatures, and they are all working together to inexorably destroy me.
So, carrying this Tolkien metaphor probably a little too far, I went to my doctor for reinforcements. It is important to note that I rarely ask my docs for help in any kind of 'help me, I am drowning,' kind of way. Rather I tend to do the every so often check up, tweak the meds, get me outta here type of visits. Today, I had even researched a type of headache called Cluster Headaches that are seen in MS and have many symptoms in common with what I am fighting with. I had a few papers with highlights and treatment options. I was actually, and stupidly, somewhat hopeful about seeing him.
The neuro couldn't have been less helpful. He didn't want to look at the articles I had. Summarily dismissed cluster headaches. He didn't want to problem solve what to do the next time I have a severe episode. Several times he muttered that I was already, "taking too many meds." Yet, couldn't seem to identify any that he didn't think I should take, should substitute for another, or any options to help me through this tough time. He started dictating before I had asked all of my questions. Finally, I flat out said, "Dr. What should I do the next time this happens?" He paused. Silence. Then said, "well see me in a month."
So, that is that. What is the point of going to the doctor? I have a progressive incurable neurological illness. My neuro has made it clear that he can't help me. So it is up to me and the dear crazy people who are taking this ride with me to fight the MonSter.

Credit for Your Loss

Most of us are slogging through our taxes this time of year. The absurdity of some of it can make anyone scratch their head. Homeowners can only claim a million dollars of mortgage interest per year on their primary residence; now that is a limitation that few in my circle are impacted by. As huge as our 2011 medical expenses were, such a small percentage of the total is deductible that we can't deduct one red cent. Medical expenses for the chronically ill should be 100% deductible! Roughly 37 percent of my federal disability is paid back to the grantor in taxes. I can't help but wonder if it wouldn't be easier for the fed simply send me a reduced amount, since I have to give it back. I wonder what my son as a teenager would have said if I gave him $20 for a night at the movies, but said he had to give back $5.55 at the end of the evening.
The real kick in the gut, absurdest moment of the 2011 tax prep came from the State of Oregon. I felt a little frisson, akin to finding a well-hidden Easter egg, when Turbo Tax asked if anyone in our household had lost the use of two or more limbs this year. They ask lots of obscure questions looking for deductions and rarely is yes the answer. What sort of dividend was I to earn for the inexorable deterioration of my arms and legs? I pushed the Next button and read:

Credit for Your Loss: You are eligible for a credit of up to $50 for the loss of use of your limbs.
You need a disability certification from your county public health officer for the first year you file for the credit.

So, let me see if I understand this correctly. The three men's suits we donated to Goodwill last year merit a higher 'payday' than my three limbs. And, why isn't it a per limb credit? I received a per suit credit, certainly each limb should receive equal consideration and commensurate compensation. It is also interesting to consider that as a donatee I designate the condition of an item, which determines the amount of deduction. In Oregon, to merit my $50 I have to get out of my hospital bed, go to the public health department and be certified Utterly Ridiculous. (Did you know that wheelchair taxis charge $75 on average).

I have no plans for this blog to be political, but if you think the Loss of Limb deduction should be revisited to a higher amount and different documentation, please consider forwarding this on to your OR state senator.

Of Islands, Streams, & Parades

If you spend time mucking about on rivers, creeks, and other flowing water sometimes an odd phenomena appears. When beavers are the cause, a dam forms and a shallow pond perfect for stomping and playing develops; in the timberlands. after winter storms, fallen trees can form dangerous pileups called logjams as if giants abandoned their pickup stick game; on a smaller magical scale are the tiny islands of debris that seem to hang suspended in mid current. Caught on slenderest reed or lip of a mostly submerged rock, the smallest leaf is snared and then a slightly larger stick as well. Before long an island of bits of nature's castoff form a floating island. As a child it was delightful to artfully loosen one piece at a time to see what would break the entire mass shooting down the creek: nature's pickup stick game.
Much like one of these islands of debris, I am snared and stuck in one place. A swirl of stuff has developed around my hospital bed that both supports me and keeps me locked in one place. Everything rolls past me; people come and go; and I am still here.
It is just so so mind numbingly boring. And, when I am given a project or something to do this damnable illness reminds me of why I am sitting here. One aspect of this latest exacerbation that scares me to death is how much my cognition seems to be affected. I have hours and hours with nothing I have to do. But the simplest phone errands and paper management become tangled spaghetti in my brain. Am I really the same woman who used to administer a physics research group? Yesterday the hubster needed me to call about a bill. First I had to have a helper write down the particulars because I couldn't seem to get it straight. Then not 10 minutes later, she gently asked me if I was going to call. I had no memory that he had called. Just a blank spot in my morning movie.
People pop in bearing gifts and hugs, wreathed in smiles. They seem almost like alien creatures smelling of rain and sunshine with stories of their busy-ness. The company is oh so welcome and the generosity is a blessing beyond words. At the same time, finding commonality between our disparate worlds is hard. I try not to scream or laugh hysterically when people ask me if I am enjoying the winter sunshine. I have only been outside a handful of times since Dec. 22nd and can't reach the blinds to look outside if my light sensitive brain didn't make me live like a cave troll. 
Here, trapped in my island of flotsam and jetsam, while the world sails by in a colorful whirling parade, I watch in envy and awe. At this stage, a couple months post major MS gobsmack, I am making the deeply painful adjustment to a new normal. No denying that I am greatly improved since that first scary head flopping leg dangling ambulance ride. Truth is I can't reliably sit up, can't transfer myself, can't be independent. I should be looking for the pony in all of this, but right now all I am up for is hanging in for another 24 hours of watching the parade go by.