Upon reflection during this final week of 2007, I recognize some revelations in my life.
1. I am happy.
This was the first Christmas in several years that did not accompany sadness, anger, fear, or grief in my life.
- 2006 - Due to (yet undiagnosed) Rheumatoid Arthritis, I could not straighten my fingers, had no grip strength, and often felt as though I had placed a finger in an electrical outlet. Gentle pressing on anything as benign as piano keys, computer keyboard, or french horn levers caused severe pain, as did holding a pencil or silverware. Carpal Tunnel Syndrome was diagnosed and surgery was discussed with the Hand Surgeon. There were times that I said I simply wanted my arms chopped off as I fantasized that would make the pain go away. Very low times for a professional musician!
- 2005 - I had finally been diagnosed with Multiple Sclerosis in October, had begun disease-modifying treatment in December, and was working on another relapse requiring IV steroids in January. In June, I was experiencing tingling, numbness, and pain in my left hand which slowly spread up my arm and over my shoulder blade. My doctor ordered a MRI and then referred me to a neurologist who wanted another MRI in July (this time with contrast.) However tests were not conclusive yet, so a spinal tap was done after which I was called into the infusion center for IV steroids in August. Although I had had optic neuritis in 2000 and a variety of odd health complaints since then, an MS diagnosis still could not yet be made official. After a follow-up MRI in late September, it began official.
I have Multiple Sclerosis!
- 2004 - I was experiencing what I now believe to be a mild MS relapse which kept me from participating in some fun social activities. Blah.
- 2003 - Much family turmoil after my grandmother died and my parents were in the midst of a divorce after 35 years of marriage. Mountains of Tears that year.
- 2002 - Actually a pretty good Christmas. My brother brought his family out to Virginia for only the 2nd time in the 10 years our mother has lived outside DC. However, tensions were high for reasons I didn't understand at the time but which I do now.
- 2001 - I live outside Washington, D.C. Enough said.
- 2000 - I was just beginning to feel better after the optic neuritis and subsequent high-dose oral prednisone regimen which likely did delay further development of MS for awhile. I was not well for a majority of that year.
2. I am grateful.
- 2007 - This year was tough for me with the idea of hand surgery looming and all the accompanying fears of never being able to play piano again. However with the swift determination of a fabulous rheumatologist, my arthritis is mostly contained. I still experience inflammation and pain, but it is minor compared to just one year ago and I am thrilled. I also finally figured out the requisite income level necessary to receive a 100% award from NORD to cover my MS drug. That provided huge financial relief, if only for one year.
3. I am loved.
- 2005/2007 - I met Rob just one week before that first appointment in May '05 with my primary doctor during which I mentioned the tingling in my fingers. Rob has stayed by my side through the MS diagnosis, through the IV steriods, through all the crying, through all the anger, through all the pain and disabling RA, through all the fear, and even through the 'attempts' to 'walk on air right off the sidewalk' (which isn't very effective I must say.)
The peace I feel now is allowing me to discuss issues surrounding some of the absurdities in our American healthcare system.
For two days this week, I could not straighten my legs. First my calves were so tight and knotted that I seemed to be walking on my toes and probably resembled the fabled Pan. After working on those muscles to let go so that I could use my ankles, my hamstrings and calves pulled their hardest so that my knees couldn't straighten. So I tried hard to stretch those muscles and make them relax and guess what? the tension moved to my gluts and lower back.
I honestly don't know if this was an episode of spasticity or a mild MS relapse or what. But it got me thinking...
In the current health reform debate, each facet of the business of providing healthcare to consumers (I actually prefer the term patient) is busy pulling toward their own argument. Each facet (doctors, hospitals, nurses, insurance companies, managed care organizations, disease management, pharmacy benefit managers, non-profit organizations (political and disease-oriented), hedgefund investors, capital investors, stockbrokers, individual stockplayers, pharmaceutical companies, lobby groups, grassroots organizers, researchers, journal publishers, advertising agencies, consultants, lawyers, government agencies, whitehouse officials, congress, and yes even patients) uses data for their own purposes. Each facet focuses on their own ideals without consideration of others' views. Each facet selfishly wants what seems personally most advantageous.
Just as each of my leg muscles wanted to pull in its own direction without regard to the adjacent muscles and physical structures, those identities debating and determining healthcare reform are not honestly considering the needs of the whole person (or system.) My calves didn't seem to care much that I needed them to let go some of their power to allow me to walk comfortably. My gluts didn't care too much that the harder they pulled the more my lower back would cryout in pain.
We, as a society, cannot pull so hard toward our own interests and risk sacrificing the flexible function of the whole. I guess my view on healthcare reform is a holistic one. Not holisitic as in homeopathy, but holistic as in most advantageous to all facets of the 'industry.'
Americans in general are greedy. When it comes to providing the best services, and ensuring the most reasonable outcomes in healthcare, we need to set greed aside and work together to address the needs of every entity involved.
Somebody needs to give up a little power in order for reform to move forward in any reasonable manner, just as my leg muscles had to 'let go' so that I could walk up and down the stairs today to do my laundry.
So there. That's it. My current take on the healthcare reform debate. Somethings gotta give or we will get stuck immobile and impotent.