Apr 012012

somehow i managed to get myself roped into one of those write every day for 30 days gigs…. this one is a bit different though… it’s about health activism… so each day i have a prompt to use and write about… bear with me…i will post other junk too as usual but i think this is a great way for me to continue writing… develop some thinking loops in the ol brain and also to get things down for all of prosperity… like anyone gives a flying hoot lol and it just adds one more thing for me to do that will help my mental status – besides, i have been saying for a year now that i wanted to advocate… do something… so here goes

so today…. time capsule of me and my health focus that won’t be opened until 2112…. eek

focus… something that’s sorta hard to do much of the time. i’ve lost a lot mentally. i used to have such a sharp brain…. logical thinking patterns, even when doing the brain dumps… now my brain dumps don’t come quite so easily. it’s like the information is in there, the thoughts, but they don’t come out in a cohesive way… they are much more swirly and disjointed without much connection to the thought or emotion that’s living up in the noggin. i hate that. communication is something that i’ve always been really good at and thrived on. it is such a major part of my career.

back to the prompt… the time capsule…

i hope that 100 years from now that there is an absolute cure for multiple sclerosis. but being the pessimist that i am, i doubt it. i honestly don’t think there is any money to be made in finding cures – there is a  freakin  butt load of money each day one of us remains sick. just think about that for a moment…. using old numbers here, it was estimated that there were 400,000 people living with MS in the U.S. a few years ago (i’m sure that number has increased by leaps and bounds lately)… so now consider the cost of health care… doctor’s visits (sometimes multiple doctors), MRI’s, disease modifying drugs, drugs to treat symptoms, assistive devices such as walkers & canes, wheelchairs, and etc. then think about long term care, hospitalizations… the list of expenses just goes on and on….

ok now… think about a cure. an actual cure… not a pseudo cure… not something that may or may not slow the disease down… an actual honest to God cure. wow! at this moment i cannot even conceive of that. but pretending – a cure… all that money for all those medical expenses that occur daily, weekly, monthly are just simply gone. no more clinical trials, no more $5000 a month disease modifying drugs, no more of any of that crap.

lots of revenue lost

i think the one thing that scares me the most out of all this junk – healthcare reform. yep. someone aka feds, deciding if/when i can have treatment for my illness… if/when i can see a doctor… if/when i can get any sort of services. WTF…

and if you are reading this 100 years from now, i hope that all my anger and pessimism is absolutely and entirely wrong. i hope that i have thought these things out of fear and not something based in reality. i hope that if you are living with MS 100 years from now that there is a cure that is affordable. i hope that you don’t have to wait for any government yahoo to approve your treatment, your medications, and whether your worth finding a way to  improve your quality of life.

so for now my health focus is on doing what i can each day… some days that’s not much… other days its better…

i take my meds, mostly. i still work, but don’t want to. i trudge through and keep up with life as we know it, which is a busy life. i do what i can to not complain – because honestly? who really wants to hear it? and who really gives a ding dang about what’s going on with my body? not many…

i get sad, i get mad… i cry… i pout… i transform into a martyr at times. i don’t get enough rest. i don’t eat right. i smoke and i’m overweight. but i don’t give a shit. i was handed this horrible card… the MS one. and right or wrong, i’ll be damned if i’m going to give up the few things that i can still enjoy.


Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  7 Responses to “a time capsule”

  1. I shoudl tell you – you’re still on my blogger dashboard, even after it was meant to end 🙂

    • huh, that’s funny! they made such a big deal of deleting all us non-blogger types… i can’t access friend connect anymore though. when i click the link, it goes to a help page telling me i should use google +… i do but it’s not the same as friend connect… doesn’t do the same things… oh well 🙂

  2. I’ve given up hoping for a cure also. Your words convey exactly as I feel. As long as there’s money to be made, a cure becomes less and less of a reality.

  3. Oh how right you are. And, at the moment, I think the researchers are going about it arse about anyway. They seem to be concentrating on alleviating the symptoms which vary from time to time and from person to person. I don’t believe they will find a cure until they find a cause. And yes, it would be a shit load (pardon the language) of money lost if they did.

    • symptom relief… that seems to be what most patients talk about too… relief… patients don’t discuss cures so much. things i read written by patients mostly talk about what is happening to them and how they adapt to it either using meds or assistive devices. but…. even if all of us rose up together in a massive demand for a cure, well, it wouldn’t happen. i often hear that patients need to have a voice… we do. they just don’t listen. sad really

      • It’s very sad. Thirty one years ago, when I was diagnosed, the MS Society talked about finding a cure for MS. These days — not so much.

        I think it was when Betaseron – the first “disease modifying” drug came out that things changed. Now look at all the disease modifying drugs there are!! Greed is a deadly sin. MS is not a sin – but it’s not deadly, it’s something we get to live with.

        How do we muster the courage it takes to do that? Do you feel courageous? Strong? Resigned?

        • i think i feel resigned…. i don’t feel courageous or strong at all… i think courage is doing something that we have a choice on, and strength is born of courage. we have no choice… we have it, we live with it, and cannot do a ding dang thing about it…. so i am resigned… it is what it is….


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