Say It Isn't So

Friday, June 03, 2016

I have not been to my blog in a long while. There are other spaces on the internet that occupy much of my time. Here though, I can say things with relative immunity. That is not just that my relatives are not aware of my blog, but that there is so much preoccupation with the bits, bites and bots in the other place that I feel it is safer to talk of my condition here. It is in fact, the reason I created this blog in the first place.

It has been 15 years since my first encounter with the trail of terror that became the diagnosis of MS. In looking back, I think the diagnosis was more devastating than the actual condition is. I do not wish to say that the condition doesn't cause great difficulty to many, for I know that it does, but I want to relay that it is not so difficult to many of us.

My neurologist had told me to research the internet and see the treatments available and to pick one. That brought me here to 'blogland' among other places. I found people here who were undergoing various treatments and having varying results. It seemed to me that many of them were sickened by their treatments. Depression was pretty evident among them. I found something that interested me because it had a 66 percent efficacy. I did not feel that being ill all the time was worth a 1 in 3 chance that it MAY slow down the progression of my condition. Plus this preferred treatment of mine was a once a month infusion, not a daily ritual. I told my neurologist about it. The good doctor had never heard of it but would look into it. Hah, who did the legwork there? Anyway I got a call about a week later saying they would set this treatment up for me. That same day Tysabri was removed from the Market because 3 people had died from PML. I was a little put out by the fact that my choice was no longer an option, and so I opted out of any treatments.

So 12 years later and I am still walking, talking and engaging in life. My immune system is overactive. I can't handle chemical scents like Febreze, static cling laundry detergents, or those cute little glade air fresheners. I may back away from you if there is something on your person that antogonizes my respiratory tract. There are places where I must leave the building due to toxins in the air. I have decided those things are poison and I am the uncaged canary to show the way.

There is pain in certain muscles that intensify then ease with a rhythm that I think I can correlate to activity and/or diet. I still do Tai Chi. It keeps my left side as able as my right side, and because there is a mind connection to ground that is emphasized in all the movements of Chi Kung, my balance is way better than it was 12 years ago and I can still pick up things with my toes. Well, some things, Socks, I can pick up socks and fling them at my cat.

I see that a version of the treatment that I was denied in the past is now available, despite the 'may cause PML which usually results in death' and it is being frequently advertised on major TV networks. This implies to me that more and more people are getting this devastating diagnosis. If you decide you need to fight this condition (my internist said it was now considered a disease, but I refuse to accept that, being of sclerated mind and body...because without the mind the body can't function, and my mind is pretty stubborn), if you decide to fight this condition with treatment, I wish you a safe and successful outcome. I want you to know that the best results are offered by a positive outlook on your future.

Namaste, Shalom, Peace be with you.