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My turn to rant...again.

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    My turn to rant...again.

    Working at home, again. The company I work for has a very good network, and using citrix to my computer at work from my home machine is a snap...but...here I am, home again. I'm protected under the FMLA, but, I work for an "I AM THE MANAGER, and you serve at my whim" type personality. I missed two of his mettings today, so I know he's not pleased.

    I woke up about 1am...had to pee...did my crab walk swivel my legs around to the edge of the bed, grabbed the stripper pole and lost my balance. Wound up flat on my back across the bed, with the spastic muscles in my legs locked in the straight out position. Managed to relax them enough to touch the floor, but couldn't get any traction. Had to call my wife to make them bend and then stand on my feet so I could get the pole again. Did what I had to do, and, with my wife lifting one leg up onto the bed, got back in and slept until 5am.

    Crab walk swivel worked...got out of bed myself, but just didn't have the energy to do the wash, dress, get in the wheelchair, roll out to car, up the ramp, drive to work, down the ramp, routine. So...I'm working at home...

    Need the job. 66, but couldn't live on SS and pitance from the 401k. If they'd fire me (which they can't because of the FMLA), I'd get enough unemployment to make up most of the difference...but then we'd be stuck out here in the middle of nowhere.

    I'm basically working for the medical insurance, but since I'm 60 miles from the nearest MS specialist, that doesn't do any mor than pay for the over the counter meds Dr. Internet has prescribed.

    And, did I mention I write for a living? Left hand is pretty much useless...it knows where the keys are, it just can't hit the right ones. One finger typing gets old...

    #2
    I hear you. Some days it's just a giant ball of 'Oh for crying out loud'. Eventually I laugh, but not before I get my whiny bugs a good workout. Hope tomorrow is better for you!

    Comment


      #3
      Yeah, a good pity party for youself helps sometimes. At least I don't have __________ (fill in the blank).

      My problem is...I don't think I have MS. First even remotely related symptom was a bit of a right foot drop at 62. Began walking with a cane. At 64, I began using a rollator. At 65, a wheelchair. I can still stand, and walk with a walker, but the spasticity in my legs makes them solid, locked muscle all the way down.

      I've had two MS Specialist at two different very famous hospitals tell me I've got MS. But, that's the medicene they know...what are they goin to say...you've got severe allergies to all the corn fields around you?

      I need to find a doctor I can get to who's willing to look outside the text book he wrote and fix this...whatever it is.

      Yeah...I know...denial is part of the process...but what if I'm right, and I'm being not treated for something I haven't got....

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        #4
        Reminds me of that song where sometimes you are the windshield and sometimes you are the bug.
        Hope tomorrow is a better day and the manager isn't a jackass.

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          #5
          Sorry you are having such a bad day. Out of curiosity, is there something other than the MS that you think it is? I may be in the denial stage still too, its been 6 years but no one can show me another person remotely close to the case of MS David has.

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            #6
            My current theory is...I had bacterial spinal menegitis at 5. Current theory says that antibiotics at the time (1950?) didn't kill the bug, but morphed it into something else (they reference either "gut" bacteria or something like a "macrophage(sp?)") that hangs around in the blood stream for years. Stress (like losing your business, your house, etc) can turn it lose again. Since it can cross the blood brain barrier, it can produce oligintal(sp?) bands that they use as the definitive test for MS. Suposedly, it can be cured with massive doses of modern antibiotics. I'm trying to talk my PCP into giving it a try...

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              #7
              WOW, hope you are right and your Dr. will listen to you. Good luck and please keep us informed.

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                #8
                Can I suggest Dasher for they typing? It is fast and easy for prose, and much better than typing one handed certainly. I find it harder to use for chat rooms and the like, but for real writing, it's great!

                http://www.inference.phy.cam.ac.uk/dasher/

                Comment


                  #9
                  Thanks for the suggestion...I'll give it a try at home.

                  At work, I'd have a hard time getting it past the IT "it-ain't-going-on-our-machines-until-we-test-it" committee...which usually takes about two years.

                  Comment


                    #10
                    MSWIFE1: Here's another one...

                    http://www.msrc.co.uk/index.cfm/fuse...how/pageid/736

                    e.g., "thick blood syndrone".

                    (I managed to pull a muscle on Saturday, so the last week, I've been taking 3 aspirins before I went to bed each night. I got up this morning feeling better than I have in awhile. Aspirin isn't the best blood thinner, but at least I might be able to talk my PCP into the Hughes blood test).

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                      #11
                      Thanks! I will check this out as David usually takes a low dose aspirin every night and then every other night two full strength aspirin with his Beteseran shot. Always feels better the day after too but is is the aspirin or the shot???

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                        #12
                        Been meaning to ask. How's the Ampyra working?

                        Comment


                          #13
                          You have me so interested in this Hughes Syndrome. Its remarkable how all that makes sense and so it actually "fits" David better. He goes for an MRI Tuesday and then to the Dr. to have the MRI read Thursday, this will be brought to his attention.

                          The Ampyra...it worked great from day 1, got movement in limbs that never moved but now after taking it for some time everything has just stalled again. I mean he hasn't lost anything that he got back but isn't gaining any more either. Now this has me wondering it we just hadn't tried hard enough before Ampyra or did the Ampyra actually improve things. Does that make sense? I think I just confused myself, sorry I am so tired.

                          Comment


                            #14
                            If you can get the doctor to at least entertain the thought of Hughes, let me know, I'll want to go see him. From what I've seen, Doctor's see the literature that starts "There is no cure for MS..." and assume that if you've been labeled with a DX of MS...there is no cure.

                            For what its worth, my experience with Ampyra was about the same (and confirmed as "typical" by my MS specialist for what that's worth). Minor, minor improvement that kind of hit a plateau, and that was it. I decided at $1400 a month, I'd spend my money on a new wheelchair and a Braun Emtravan. (And make real good friends with the paramedics that come pick me up off the floor once or twice a month. DW even makes coffee after she calls them).

                            Comment


                              #15
                              David got his Ampyra covered for free from Acorda Theraputics so he will continue to try it. His nuero is not a MS specialist but doubt he will even hear me out. We had the best MD she would do anything for us, but she just left last month and I have yet to find a replacement for her. My fingers are crossed, this really really sounds like something we should at least check out, I mean its just two simple blood tests. Our daughter is going to college as a labratory tech, if he doesn't hear me out, I am going to see if our daughter can take his blood to school and perform the tests for us at the college's lab. I was brought up...where there is a will...there is a way. I'll keep you informed.

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