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What I’ve Learned from my Eleven Year Shit Show

I spent the entire weekend documenting everything I’ve tried for my MS. Thank God for iCal, my Amazon order history and the “purchase” file I keep in my email app. I’m not surprised by the vast majority of medicines, therapies and equipment as much as I’m shocked at what I forgot. For example I literally had no memory of taking an expensive medication as well as many treatments until stumbling upon them in my digital calendar.

At this point I need to stop, post and hit publish. Over the next few weeks I’ll be describing what’s been working for me these last two years. In the meantime if you have a specific question about what I’ve tried at any point feel free to ask in the comment section or message me.

And no, I didn’t have the courage to tally up how much this has cost me out of pocket.

One thing at a time dear readers. One thing at a time.

The following tables indicate what worked, stopped workin or never really worked at all since my diagnosis in 2009. Please note, anything in yellow worked, just not all the time.  Or it worked at first but didn’t give me enough long term improvements to justify continuing to pay for them. Some things started out feeling very “green” and formidable only for me to later realize that it was simply keeping me upright but not moving forward.

Don’t get me wrong, upright is awesome. But never moving forward makes me try something new eventually. So yellow below isn’t necessarily a bad thing. In fact some of the yellow cells below are items I hope to return to and try again. But for now, it’s been my experience, that they aren’t as good as the green cells below.

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The following tables indicate how I stumbled upon the medications, therapies or pieces of equipment in the first place. Purple, like yellow above, is also complicated. Just because my physician assistant didn’t tell me about something doesn’t mean she wasn’t completely on board and enthusiastic about therapies once I shared them with her.

I’m simply trying to illustrate how much personal work one must do when diagnosed with something chronic.

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Updated for accuracy on 3/16/20. Featured image by I.am._nah

4 replies on “What I’ve Learned from my Eleven Year Shit Show”

Hey Linda
I haven’t seen you since smart step brace shoes! Glad to hear something is working for you and that you’re writing again.

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I think it was the dynamic bracing system. Didn’t we talk outside @ Starbucks? So either fall of 2016 or spring of 2017. Step smart brace was last year. Regardless – we’re seriously overdue for a coffee catch up? I say we pretend it’s the 80’s, call each other safely from our homes and talk for an hour. At least now we won’t be attached to a wall or whispering so our parents can’t hear us. I’m around all week – call whenever.

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Reblogged this on portfoliolongo and commented:
I’ve reblogged posts from my neice, Linda before. She always has something to say, and it’s never based on vicarious experience. She’s generous, direct, and funny. So, from the bottom of my heart – via my funny bone – I share this post for your benefit and for the possible benefit of those in your circles just in case you sense any tangible or intangible applicability.

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