Feb 132012
 

i’m finding more and more people who are deciding against taking DMD’s (disease modifying drugs)… and they are all reporting that they feel BETTER off the meds….and now if only my face would freakin wake up!

this is something i’ve contemplated off and on for the past several months… such a tough decision to make… and my decision impacts all of those around me… especially coach… i mean, if i make the wrong decision – either way – he has to deal with it

the weight watchers stuff is actually working… imagine that… i’m down a total of 4 pounds since i started with them… slow and easy… and i haven’t felt like i’m being jipped out of any food i have wanted… i’m getting the hang of the portions… and thanks to the wonderful side effects of my little pink energy pills, i don’t have much trouble with feeling hungry….

i wish there was money in advocacy… i don’t mean like a little trickle of cash here and there…but a salary… i think i would enjoy it… i love public speaking (bet you wouldn’t have guessed that one), i love to write and do research… i enjoy talking to folks most days… in the past few months there have been various people in contact with me about such things… but there’s just no money in it… and i have to work…. have to… and work zaps me so there’s not much energy left to really dive into doing any real advocating….

i’ve been feeling rather blessed in my life for a while now… history tells me that this generally means someone is fixing to take a big smelly doo-doo in my world soon… you know, when things get too good or too comfy well, it seems the universe has to throw some wrench at you….

pass the red bull!

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

  5 Responses to “no particular thoughts going on here”

  1. To take or not to take – such a hard and very complicated decision but a very personal one. As you know I am in the no DMD’s camp. Personally I don’t feel the statistics support the claims. How can any evidence really be that valid when no one can know how many lesions I may or may not have developed in lets say 5 years? We are all different eh.

    I do not equate choosing to not stab myself with toxins in the needle as giving up or not fighting. I have not giving up or given in to this disease or any of the other things the docs say are messed up. If I had been on the drugs the past few years they would probably claim me as proof to the effectiveness of their drug. I am not sure that I think fight is the operative word but I put a lot of effort into staying active and moving.

    I hope whatever you finally decide and settle on is based on what you want and feel not what other wish for you. Hard I know especially when it is family. I am not sure how to express this so I shall try ummm. If you decide for yourself yes or no on the drugs for now then you might find it easier to live with your decision. Right now it seems that you are not making the choice but differing the responsibility of the the decision onto others. Eh? not sure that made sense.

    As for doo doo’s the electronics are out to get me a swear they are 🙂

  2. Choosing is a real minefield isn’t it. I am staying with them for the moment but …. And my neurologist gets really p’ed off at me when I tell hime that they are an act of faith. They are supposed to reduce the number and severity of relapses. I still have them and some have been fairly foul. ‘How do I know they would have been worse?’ Answer: I don’t.

    • a minefield is certainly what it is! for the moment i am staying with them too…. i guess maybe it’s good that i have others who want me to do this…. in their eyes, i’m fighting the good fight and doing something to help myself. i still remain unconvinced that this medicinal path is right… sometimes i feel like it’s all one big freakin clinical trial… and i have to wonder if we wouldn’t all FEEL BETTER without all the extra toxins we are putting into our bodies….

  3. I hear more and more about people not using DMD’s either. I’m still on one, and often think about not taking it anymore, but that scares me too. What did you decide to do?

    • i haven’t decided… i would LOVE to stop taking the meds…. but i think my family wants me to continue… so hard to decide…. i think if i stop they will be let down, as if i’ve quit “fighting”…. but in my mind, there’s nothing to fight really… it is what it is… and i really think that with or without the DMD’s this disease is going to progress and do it’s thing… i don’t know… such a hard decision to make….

      i was without my copaxone for about 6 weeks while insurance decided if they were going to pay this year… and you know, i felt really good… it was so nice not putting toxins into my body… and i don’t have to mention how nice it was to be without that painful shot 🙂

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