That’s Something To Be Proud of…
As frustrating as the past week has been at times, there have definitely been some decided up points. It’s those times which make it worth it for all parents emotionally invest. It’s pay back for the discussions about why it’s not OK to punch a kid in the face even if just play fighting. It’s pay back for those bed time fits.
I know from the title, a comment on the country song titled the same as this post is probably expected, but it’s on these days I feel the lyrics from the 10,000 Maniacs ‘These Are the Days’ come closer:
These are the days you might fill
With laughter until you break
These days you might feel
A shaft of light
Make its way across your face
And when you do
Then you’ll know how it was meant to be
See the signs and know their meaning
It’s true
Then you’ll know how it was meant to be
Hear the signs and know they’re speaking
To you, to you
During the week this week, both my kids have amazed me and others. Mr. O showed he can climb a Jacob’s ladder all the way to the top in a fast and most unorthodox way. I’ve tried to tell people he climbs ladders with three points on the same rung all the time, but until people see it, I don’t think they know what I mean. It requires a lot of strength and balance, both of which he has in spaces. In any event he climbed right up the ladder stopping on only the last rung to ham it up for the gathered crowd watching a boy climb the huge for him distance between each of the rungs with his hands never further than shoulder lengths apart. crazy…and he used his prize to buy lemonade for him, his sister, and mom. Bravo. Ms. A was the one who stopped our group because she wanted to try. While she did not make it to the top, I love the way she hopped up each time she fell off to try again. Tis far better to try to reach what seems an impossible feat, rather than live solely in the ordinary. Even if you fail, others may be inspired.
2 days later, Ms. A comes home with student of the week award from her school which turns into a meal at McDonalds courtesy of her prize. She works very hard in school, so hard she comes home a tired little girl. Bravo. Learn everywhere you can. Sometimes the effort spent learning may seem excessive with little reward. Just remember there was a very successful business man, Steve Jobs, who turned what he learned in a calligraphy course after dropping out of college into the huge Apple company. Just learn Babe. Just learn.
It’s the victories in these days reminding me to believe in my kids and all the confidence they have gained living with us. It’s these days which offer glimpses of what may be and what we are working to instill in our kids. May they always have tools at their disposal for whatever they chose to pursue.
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On the personal front, the pains in my hand and arms continue pretty much unabated now. Even upping the medication dosages to help isn’t. I’m less and less sure of things in my head as I find it easier and easier to sit back and observe high stimulus situations rather than dive in to accomplish a goal in the midst. I know my last MRI showed no new lesions. Sadly the lack of a real flare combined with an increase in symptoms argues more and more for my having passed into secondary progressive MS (SPMS). Roughly half of all relapsing remitting MS (RRMS) stop getting the relief of remissions between year 5 and 10 as they pass into the progressive phase.
Here’s the issue I have. I have the natural desire to be able to label my disease. I think everybody wants a label for what’s wrong. Naming gives us power and a perception of certainty, even if the certainty contains many unknowns….but I can’t ask my neurologist if he thinks I am progressive now. There are no good and easy drugs approved for progressive MS. There are some tests, including a few for the use of the very drug I currently take for halting the progression of RRMS. If I was diagnosed with SPMS, I would need to be in a study to contiinue the drug I currently take. Failing entry into a study, why should my insurance continue to cover an expensive drug for an off label usage?
Given the no new lesions findings, it would appear the drug I am on is working from that perspective. So I don’t ask for information which would in the best case allow me the same treatment I get now. In the worst case I would be without anything currently suspected to help.
The increase in symptoms with no new lesions, the less dramatic effect from the positives I used to feel 2 days after my infusion, and the steady worsening of symptoms making things once easy feel more and more like something to be proud of are all signs I may be entering the progressive stage. I still take the stairs for over 125 stairs up a day at work, but it’s gotten inexplicably harder in the past month. Cognitively speaking, my main issue is motivation, especially in environments of large amounts of stimulae…which scares me because it’s not been an issue before, but is becoming one more and more.
Still as my birthday is on Monday, maybe I can just blame all the difficulty on age. I’ve long maintained most of my symptoms are shared by the elderly all over the world, and we’re the lucky ones. Living like this beats the alternative.
