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    Needing Someone 2 Talk to...

    I got dx Summer of 2011. I went through 4 years of testing and when I finally got diagnoses my doctor says he thinks I have been livng with MS for many years... I use to be on Copaxone but now I am on Avonex auto inject. I couldn't handle the on site reactions with Copaxone.

    I don't take all my pills like I am suppose to because they take the energy out of me that keeps me going to work... I am suppose to take 600 mg or Neurotin every day, Realfen 1000 mg a day, Baclofen 60 mg a day, and abilfy for depression... I work in a chair factory that has no A/C so during the summer time it will reach around 110 degrees on a daily bases. My workplace has made some accomdations for me.

    Everyone at work tells me to file for disability because I have problems walking sometimes... Sometimes I have to use a cane... I do try to work but there are a lot of things that I do have problems doing... I don't have a college degree and I have problems with memory... My parents push me to keep on working... I just don't know if I can keep going on...Someone please help me...

    #2
    will try

    are you living at home with your parents? if not then maybe you need to do what is best for you. how old are you? many people report feeling free once they don't have to struggle to get to work, but work gives us structure and you may need it for income. I suggest you find a good SS disability attorney and talk to them. SS disability does not pay too much and is difficult to get since so much of what goes on (ie fatigue and other things) are not easily discernable.
    good luck

    Comment


      #3
      my heart goes out to you

      I know my own posts don't sound very upbeat right now. But there some things I have learned from having EDS CVID, and IC--all invisible--and yet, when bad enough, still disabling. A mild case of all 3 can add up to serious disability, but I look just fine!

      When you have an invisible disability--or one mostly not discernible to the uneducated eye, including many healthcare providers--you have to be very clear on who knows how you really feel and what you are capable of, and TRUST IT. That person is YOU, first, last, and always.

      Even when you can't get others to agree.

      Vocational rehab or other counselors might be able to advise you as to how you might gain independence, even if disabled from physical labor. I personally know of three people--2 not even HS grads--who were given paid college as part of rehab, and full medical benefits, food stamps, and other help until graduation!

      Maybe your parents are frightened they can't support you, or think you will break down emotionally without the structure of work. It could be anything--even just how they grew up and look at work. A good lawyer is always nice to have...but so is a good counselor to help you sort it out, cope, and PLAN for what's right for you, based on your knowledge of yourself, and what else you learn or go investigate for yourself along the way.

      Unfortunately you will need to educate others (those who are willing) along the way, so work on trusting yourself even with no agreement or support, in case that time comes NO one agrees with or supports you.

      I have lived to tell that tale at least 3 times, and will again if need be....It can be done. Hang in there; don't give up...Can we make a deal? If you don't, I won't this time, either. :-)


      Originally posted by rebel4you2012 View Post
      I got dx Summer of 2011. I went through 4 years of testing and when I finally got diagnoses my doctor says he thinks I have been livng with MS for many years... I use to be on Copaxone but now I am on Avonex auto inject. I couldn't handle the on site reactions with Copaxone.

      I don't take all my pills like I am suppose to because they take the energy out of me that keeps me going to work... I am suppose to take 600 mg or Neurotin every day, Realfen 1000 mg a day, Baclofen 60 mg a day, and abilfy for depression... I work in a chair factory that has no A/C so during the summer time it will reach around 110 degrees on a daily bases. My workplace has made some accomdations for me.

      Everyone at work tells me to file for disability because I have problems walking sometimes... Sometimes I have to use a cane... I do try to work but there are a lot of things that I do have problems doing... I don't have a college degree and I have problems with memory... My parents push me to keep on working... I just don't know if I can keep going on...Someone please help me...

      Comment


        #4
        hey soldier.on

        i don't know if the mods posted my reply to your thread but reading this from you

        - treat yourself as nicely as you are treating this poster, please -

        hey rebel4you2012

        what works for you? that is the message i am getting here from the others. if you're ok still working do it. if you're not, don't. either way look after yourself and we're all mates here, so it's nice to meet you too.

        i am not sure if you have the heat intolerance thing? does that apply to you? can your workplace accomodate that as much as you need to not get sick from your work? if so then they probably should under anti-discrimination and workplace safety type regs (depending on what the laws are in your part of the universe). if they have done best they can to accomodate and you're functioning fine then people are supposed to not make an issue out of it and in any event treat you like an equal human being cos that's what you are.

        if your job does not require you to walk briskly and cane-free then it does not matter if you need a cane and people can drop the subject. if they're pestering you about it to the point of bullying (which is different from minor misunderstandings that come from a lack of education about a complex disease) then look into the appropriate procedure for dealing with that issue, and take it.

        maybe as it is no secret in your workplace that you happen to have MS that it could be an opportunity to be an ambassador, and educate your collegues as well as help find a cure? like maybe your local society chapter holds an annual fundraiser - set it up at work as an ice-breaker? maybe? just an idea

        either way look after yourself
        hugs!!
        ---------
        Wishing everyone luck and as many good days as possible.

        Comment

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