Wednesday, August 19, 2009

Update on an improving Wednesday Morning

Don't have it in me for much, but knowing that many folks are keeping an eye on me, thought I should do a quick update on me and my nasty head pain:

To Whit
  • I had two nerve block injections Tuesday morning--one in the back of my head and one in my neck. Ouch
  • I am slowly feeling relief, in that, so far today I haven't actively considered banging my head against the wall .
  • I only remember waking up twice last night-so have had a little more sleep.
  • My sound sensitivity is ratcheted back a few notches and I have my blinds open a crack, cause my eyes aren't as squeamish about light.
This morning while reading James 5 I read verses 9 and 10, they reminded me to hang in there.

Take the old prophets as your mentors. They put up with anything, went through everything, and never once quit, all the time honoring God. What a gift life is to those who stay the course! You've heard, of course, of Job's staying power, and you know how God brought it all together for him at the end. That's because God cares, cares right down to the last detail.

Monday, August 17, 2009

Ranting on a Bad Monday Morning

Another Reason to Detest our Medical System

I am in pain-severe, can't sleep, can't function kind of pain, all weekend I have hung in there waiting for my pain doctor's office to open so I could be helped.

You see, I have occipital neuralgia, which runs from the back to the front of the right side of my head. It is the only MS pain I have experienced that I can have immediate relief from. The treatment is a cortizone nerve block shot into the base of the back of my head-almost worse than the pain, but worth it if this insane pain can be stopped. About two months ago, when this started, I saw my pain doc and he gave me the shot and whammo--pain almost completely gone. He told me it was sometimes a temporary fix and if the pain came back to call their office and I could have another shot (no big deal, right?)


So, on Saturday the pain in my head came soaring back and all weekend I counted down the hours until 8am on Monday. At 8:05 I left a message with his medical assistant. At 9am a scheduler called back and offered me an appointment 3-weeks from now. I explained my situation in more detail--told her that in the years I've been a patient I have never asked for immediate help. She informed me that they weren't an 'urgent response' practice and that was the best she could do was Aug. 28th. Finally, she begrudgingly agreed to let me speak to the assistant. So, the assistant calls me and informs me again that they aren't set up to respond to emergency increases in pain (yes, you read that correctly) but she can let me see the nurse practitioner -- tomorrow.

I mention that I had a bad reaction to the first shot and that Dr. Kosek had to sit with me and give me oxygen. She says she sees this in my chart notes---but the earliest I could see him is sometime in the distant future. I ask her about the next Friday or 3-week openings--these are also with the nurse practitioner.

Simply put, it is seemingly impossible for me to see the doctor. This type of shot isn't available at my general practitioner or urgent care clinics or ERs. Why didn't my doctor explain that it isn't his practice's habit to respond to urgent pain needs. I wouldn't have spent the last 48 hours waiting for his doors to open.

Good to know, but no help to me today. I hope that tomorrow--24 more hours of intense pain from now--the NP will be able to help me. Not sure what I am going to do next time.

Thursday, August 13, 2009

all the world's a stage..........

When I was a girl, long before the zoo figured out how to properly house their residents, the exhibit for bears sat prominently near the entrance. The enclosure was made of barren concrete and the caged bear paced endlessly. Back and forth, seeming to stare longingly or hungrily at the crowds gathered outside the bars. The bear's thoughts were a mystery to the visitors and each one saw the bear in a different light. Something about the restless pacing made me achingly sad. Others may have seen only a fierce animal properly contained or maybe they gave no thought at all to the endless movement of the bear on his concrete stage.

An inherent aloneness exists in difference and 'other.' I learned this all too well nine years ago when I started using an electric wheelchair. I might as well have a blinking neon arrow with 'look at the gimp' flashing over my head, following me wherever I go. When I was a 'ped' (as in pedestrian) I was unaware of the luxury of blending in to the world of legs. If someone glanced at me on campus or the bus I was just another face carried along by feet. Once the wheelchair became a part of me I entered into the intense scrutiny of difference. People stare open mouthed as I go by.

My job is apparently to assume their good intentions, politely tolerate their probing questions, their inquisitive children, and their intrusions and interruptions. I often enjoy hanging out at my neighborhood coffee shop. I sit in one of their comfy chairs, reading and getting up occasionally to add more cream to my coffee, give in to the temptation of a brownie, or use the little girl's room. Ordinary, normal behaviour, not worth noticing, unless you use a wheelchair. Just the other day two women and a little girl were sitting across the room from me. Every time I tranferred and drove across the room, the girl would point and yell, "look, look at the lady." Her mother hurriedly shushed her and then on my way back to the chair, the girl did it again and then again. I did my best to ignore her, but it is unsettling at best and down right annoying to be under such intrusive scrutiny. Finally, the mother whispered to the girl and sent her over to talk to me. Unbidden and, churlishly, I will say unwelcome, the girl came over and began to ask questions, 'what is wrong with you?' and 'why do you sit in that?' I pushed aside my annoyance and dealt pleasantly with the girl, but really, I am just a person who happens to use wheels instead of feet.

MS is not easily defined. I know a lady who has had it for over 20 years and she has no outward signs. On the other extreme my trembling hands, jerking arms, braces, dark glasses not to mention the chair instantly mark me as afflicted. You know there is something wrong with me, but what exactly? Curiousity is difficult to contain. Then, when you get to know me better, enter into my 'village' and interact with me weekly at church or in the neighborhood, you make up your own story based on physical clues. She must be paralyzed, but quad or para? Why does she have those braces on her arms? What should I say to her?

Friends and family do their best to 'read' the clues; a yawn, or a grimace, or my answers to their questions and create their own story about the state of my MS. When they ask how I am; I simply don't know how to answer. Are they asking how I am physically compared to five minutes ago, last year, or back when I only dealt with the ordinariness of the every day. Do they want a detailed run down or will their eyes glaze over. Do they recognize that certain symptoms are my constant companions.

Recently I tried to use statistics to track 'how I am' in an effort to better answer the question. My husband is a statistician and he helped me write formulas and enter data into a spreadsheet. My plan was to assign, on a one to ten scale, a daily record of my fatigue, pain, weakness, and other symptoms. Quickly our efforts bogged down and eventually came to a stand still when I realized my base line, that is my -0- is impossible to define. Is -0- me on my best day right now, some point in my past, or is -0- how a healthy body should work. It is like asking a woman to define pain before and after childbirth. She might have thought breaking her arm was the worst pain ever until that 10lb baby makes an entrance. From that time on she has to quantify pain in a entirely new way.

This public isolation
, the reality of living with a disease that is on prominent display, creates a life that is both open to endless scrutiny and shrouded by an impenetrable fog. As I write this the pain in my arms is soaring and I find an occasional tear trickling down my face. But, if you looked at me with my headphones, tucked in bed, you would never know. And, if I tried to explain, do I have the words for you to truly understand?

Wednesday, August 12, 2009

Flat and Opaque.....

Having come through a rough patch and still trudging along on what is a seemingly endless path of bad and slightly better MS days I am feeling rather flat. As I heard in the first Lord of the Rings movie recently, 'like too little butter spread over too much bread."
I am never quite sure how to get a handle on my mood when I am feeling this ground down. I am like a sailing ship caught in the doldrums. It isn't a matter of claiming a better attitude or pulling myself up by my own bootstraps.Or sleeping more or flipping some magical switch. I simply don't have the physical reserves or the mental energy to do much of anything. The odd thing is I am not bored, just flat.
I love words and the power of their meaning-to that end I am one of those odd people who reads the dictionary for enjoyment. I find them particularly useful for putting into word the most difficult of concepts.
In the Oxford Dictionary the definition of doldrums is:
1 a state of stagnation or depression. 2 a region of the Atlantic Ocean with calms, sudden storms, and light unpredictable winds.
And Flat as an adjective is:
1 having a level and even surface. 2 not sloping. 3 with a level surface and little height or depth: a flat cap. 4 (of shoes) without high heels. 5 lacking vitality or interest: a flat voice. 6 (of a sparkling drink) having lost its effervescence. 7 (of something kept inflated) having lost some or all of its air. 8 Brit. (of a battery) having exhausted its charge. 9 (of a fee, charge, or price) unvarying; fixed. (of a negative statement) definite and firm: a flat denial. (of musical sound) below true or normal pitch.
The words in bold readily paint a picture of how my world feels these days.

Thursday, August 6, 2009

Homage to Star Trek and Carpeting

I am often asked how I stay a person of faith given the difficult path my life has taken. As if calling myself a Christian guarantees a Willy Wonka golden ticket into a magical life of white picket fences, mini vans, and Partridge family living. Were this true; folks would be lining up at the door of every church in the nation. These lyrics (from I Believe, by Barlow Girl) speak to the profound challenge of having faith through all of life:
I believe in the sun even when it's not shining
I believe in love even when I don't feel it
And I believe in God even when He is silent
And I, I believe
(song) (complete lyrics)

Having faith is what carries me through weeks like this past one where I suddenly lost my voice. I cling to a silver thread that winds its way through my every day and on into eternity. Humans see suffering through the lens of their own life time-my years, my house, my job, my broken heart.
My own faith is deeply influenced by too many hours of watching Star Trek, work with me here, where time is fluid and the actions of one person resonate throughout the 'space time continuum' and impact the course of human existence for generations. If I see my own life as part of an unimaginably intricate and immense carpet being woven by a master hand--what I experience in my own lifetime becomes part of something much greater and grander. I may never see how God uses the circumstances of my life, but I do know that if I weren't here that priceless carpet would have a small flaw. The reverberations of my life will carry forward in ways I will never know.
It is never my intention to preach or judge. My words here are simply to answer the question of why I believe, even when He is silent.