TM

I feel like screaming. Literally, growling or yowling, and wonder if that would help at all. After two weeks of managing all right, my legs are killing me and walking is nearly impossible. The damnable thing is that I have no idea why. 

It’s not like I did anything terribly different yesterday than I had on any of the previous days. I did walk a short way through the woods with my dog buddy for the third time in four days. I felt okay, relatively, when I went to sleep. But, I woke up at five this morning in pain and uncomfortable, and my walking is in the shitter. 

I had been feeling more hopeful. After our trip to Oaxaca, Mexico, in December, I had an appointment with another neurologist (one I had seen many years before).  I was not able to walk well in Oaxaca. This was unfortunate because as much as I love Oaxaca it is not the accessibility capital of the world. 

In any case, Ronnie and I decided we were going to pursue a diagnosis for me no matter what it took after all this time.  I wrote out my “Chronology of an Illness” with all the details of years of frustration. So, my request for him was written down as:

“What I am asking for:

• Updated MRI, with plan for yearly MRIs to monitor
• Diagnosis and/or treatment plan
• Referral for electric wheelchair
• What would you do if I was your wife?”

The neurologist looked at my history, what I’d written, notes from other neurologists, test results, all of it, and popped off with, “Have you heard of TM?”  

Ronnie and I looked at him and shook our heads no.  He said, “It’s Transverse Myelitis.”

In unison, we said, “What’s that?”

He went on to explain it’s a autoimmune disease that started out when I was much, much younger either from a viral infection or trauma. Ronnie and I exchange knowing looks. Trauma from childhood is my middle name.  It attacks the myelin coating of the nerves effecting the central nervous system.  This was in keeping with what we have known before. 

Then, there was a good news, bad news situation. He said the good news is that it hadn’t turned into multiple sclerosis and won’t now due to my age. Also, the autoimmune issues settle down as you get older. (I just proudly turned 60 which he noticed.)  The bad news was my body’s ability to cope with the previous nerve damage lessens. 

So, there it is.  As for electric wheeled devices to help one who can no longer push themselves?  Only if one can’t get around their own house. For work or community, it’s on me.  And, no, there’s nothing more he could do for his wife or daughter or brother or uncle or aunt or cousin. But, getting exercise is good for you. I haven’t figured out entirely how to do it without causing a flare with the related incapacity. 

And, here I am.  Extremely uncomfortable with no known reason why, trying not to think of what tomorrow will bring whether good or bad.  Because, tomorrow is of absolutely no help for today.  Thus, I think I’ll go brush the dog out on the deck and look at Mt. Rainier.  I don’t have to stand, and it’s exceptionally rewarding in its accomplishment.  It makes the dog very silky, and the house less hairy.  What’s not to love?

L’Chaim. 

Joceile 

1.14.18

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