As I write this I am thinking about the first time I posted on this site. I had MS for a little over a year and was writing about my experiences on my personal blog. I was so grateful for the help and information I had received that I wanted to give back. And my writing was a way to do that. I joined Health Central in the late summer of 2008 and so I have been writing here over a year now. And so I have come full circle. I was officially diagnosed with MS in the fall of 2007 and here it is...the fall of 2009 at the time that I write this.
I have learned a lot here. I have especially learned about kindness, compassion, and resilience. You all are amazing people. And I feel that I have received far more than I can ever give to you.
As a matter of fact, I feel guilty that I cannot give you more.
I am presently writing for four other Health Central sites and I am a community leader for two of those sites. I have been trying to do it all but I just physically cannot. And so I have been gradually and purposefully fading away on this site. I voluntarily turned down being the community leader for MS Central and now I have made the decision that I will cease to write here as well. Maybe I will make a guest appearance now and then. But for my overall sanity and general well being I had to let something go. So with a very heavy heart this will be my last post here for awhile.
You can still find me on these Health Central sites and I hope you do.
You guys are fantastic. And Sherry...just to let you know...I went out this past weekend and bought me three new handbags in your honor. :>)
So on this note I will leave you with the story of my diagnosis. This is where I began. My story will continue. And so will yours.
I wish you all much peace, love, health, and happiness.
The day I became an MS Patient
They say everything happens for a reason. I am inclined to believe that. Or maybe it is just that I want to believe that. Believing, even if it is an illusion, is preferable to not believing in anything at all.
When I went in to get my MRI to test for signs of Multiple Sclerosis I knew already. I didn't need the images of my brain to tell me. My gut knew. But of course I did the test anyway because that is what you do. You proceed in a linear fashion. I conceded to put my faith in science.
And science found that I have lesions, multiple ones in my brain.
Back to reasons. Why MS? Why me? Why now?
The answer came to me with a sharp edged clarity. Why not me? Why not now?
I paused outside the big glass doors of the neurology hospital. I knew that once I stepped through those doors my life would be irrevocably changed and there would be no turning back. Time is a funny thing at those moments. It slows down to the most imperceptible movements. The motion of hands and a pull at a door handle, the shuffle of feet, the faces of people passing by, a car rolling into a parking space all slowed down to that one moment in time.
Everyday people cross these invisible lines, unknown to everyone else. Nobody can do it for us. We must cross over alone.
I had to check in before going to the waiting room where I would see my neurologist. There were many people there sitting in a row of wooden chairs alongside the wall. I hated this place immediately. It reminded me of all the waiting rooms I had ever been in with that feeling of gloomy anticipation. I got directions to the doctor's waiting room and I wedged myself in a seat against the wall.
So these were neurology patients. I looked at the faces. Most were elderly. Some had walkers or canes. One woman was wheeled into the waiting room in front of me. This woman struck me the most. She must have had Parkinson's disease or something similar. She was so frail and shaking all over, but particularly her hands. I am ashamed to say I did not want to see her.
When it was time for me to go in I felt ready. I had my little notebook of questions. I had already researched MS and knew much about it. I knew what medication I wanted to try.
My doctor was lovely. I was told that she would give me TLC by the receptionist who also had her as her doctor.
My neurologist asked me some questions about my medical history. There really wasn't much to tell from past years. I have been so healthy that I couldn't even remember the last time I had the flu. Hell I have never had a broken bone, not even a sprain. I have never been stung by a bee! The doctor joked that I was saving up for something big. I talked about the last six months and my growing awareness that something was wrong. I talked about losing my balance, feeling dizzy, tingles in my extremities, stiffness, numbness, and problems with my vision. She listened intently and wrote it all down. I also told her of my seemingly isolated incident of optical neuritis ten years ago.
I got to ask my questions next. I had practical questions about insurance and financial matters. Of course I asked about diagnosis and prognosis. From prior doctor's reports, my medical history, the MRI, blood work negating other reasons for my symptoms, she was able to say that yes this was MS. As far as prognosis, she told me how she had two ladies coming to see her with MS following me. She told me that one woman was still running and playing racquetball and having very little in the way of symptoms. My doctor followed with, that the other woman needed a walker to be able to get around. Both women were the same age. In other words, she couldn't tell me. She did think I have the relapsing remitting kind of multiple sclerosis where I will have episodes of symptoms which will eventually abate and resolve.
We discussed treatments next. I told her I had researched Rebif and that was the one I would want to try. She was totally accepting of my choice which I was not ready for. I thought that she would have a medication already in mind. I felt more in control of this. I told her that I really didn't want to take the medication at all but that I would. The medication for MS is no easy thing. If only it were a daily pill. But unfortunately you have to inject yourself. With my medication of choice I would self inject three times a week. The side effects include skin reactions from the injections, flu-like symptoms, and the chance of liver damage. So basically I am signing up to have the flu every other day. They say that the side effects wear off and some people get used to it. I am hoping that happens. The other thing is that these drugs do nothing for your symptoms right now. They only help in slowing down the disease so you don't get more lesions over time. The drugs cannot undo the damage already done. And the efficacy for any one of the drugs (there are really only about five choices) is only about 30%. So you are getting purposefully sick each week in hopes of not getting very sick...in the future.
Faith seems to be inherent in dealing with this disease: Faith in oneself to cope, faith in doctors, faith in science, and ultimately faith in something bigger than all of us vulnerable bits of flesh and grey matter.
I had a small examination while in her office. She had me perform people tricks. I had to walk a line, heel to toe, walk on tip toes, walk on heels, be tapped with a rubber mallet, be pulled and show my strength in pushing back with feet, legs, and arms. I was in remission so I told her she should have seen me several weeks ago. I would not have been able to do any walking or standing without falling down. She told me I was still no ballerina. I laughed. No wonder my dreams of dancing in tutus never worked out. She found weakness in different places of my body and my gait was still off. At the time of the visit I was still having some vision issues including seeing flashes of light in my periphery.
Doctors love to do tests and my neurologist is no exception. She was kind to me in not forcing me to do a spinal tap. No thanks. We negotiated a deal where I would get a C-Spine MRI and some evoked potentials testing done. More research for me to understand what in the heck those were.
The visit ended with a promise for future visits. She would show me how to do the Rebif injections following her examination of my other tests. No way out of this. An official diagnosis was forthcoming. I would be coming to this building a lot. I looked around to see if I could find any bit of home here, a familiar poster, sunlight through the window blinds, a swatch of threadbare carpet.
Firsts are always hard. Maybe for the simple reason that you can't go back. Time, no matter how much you wish, or pray, or will it, will only move forward.
I walked in that hospital door voluntarily. I knew what would be told to me. I walked out the same person I always was. I just knew more. I have a new label. Patient. Patient with an incurable disease. But it doesn't change the fact that I am me and have to live this life as I have always had to do. The line had been crossed and time was allowed to once again regain its momentum. Like a choreographed dance I stepped into line with it.
Published On: October 12, 2009