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A little cheese with my whine....

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    A little cheese with my whine....

    Sorry folks, but I need to get something off my chest. Last week I spent 2 days getting almost all the breast tests I need and wrote about it in the September chit chat thread and then we had to go to my husband's eye specialist on Friday. Never....ever....make another appointment on a Friday before a holiday. Joe has macular degeneration and this was a followup visit to see if the laser treatments he has been getting were working.

    No such luck! Now he has to get injections into the eye. We were there from 1:30 till 3:30 waiting to get the pre-authorization from the insurance company. The 20% co-pay will be over $400.00 and we don't know how long he will be getting them. Finally we decided to go get lunch and come back another day since it is only 15 minutes from the house. So there were 3 days last week that either I or both of us spent waiting in a doctor's office.

    We got the mail when we got home and found a letter from the neurologist telling us that his appointment on the 12th has been rescheduled for the 18th. The same day as he has another appointment with an orthopedic doc and hopefully get fitted for a back brace. The reason was the neurologist is going to be on vacation. This visit is a followup to try and come up with Joe's diagnosis and in the meantime.... he is slowly progressing....without knowing what IT is. The neuro did mention ALS ....Lou Gehrigs disease so he is testing for all the other potential diseases as it is a diagnosis of exclusion.

    Now, we will find another day so he can see the neurologist and if he still cannot come up with a diagnosis.....we may have to go to Mayo Clinic. I have researched their website and found they are able to get a diagnosis in 2 to 3 days. Here the neuro is doing 1 test at a time and then we have to wait a month to come back so he can do another 1 test. My patience is wearing thin.....

    And we thought when we retired we could travel and enjoy ourselves....LOL I guess we could travel to Mayo Clinic and try to enjoy ourselves!

    Gabriella
    Last edited by Gabriella7; 09-03-2012, 08:39 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

    #2
    Well, Gabriella, as you say you are travelling. 1 out of 2 on your retirement list. That type of travelling is NOT my idea of enjoyment though.

    Getting it all done in a short time period seems much better than one test at a time.

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      #3
      Anyone can add to this whine list....

      Feel free to share your whine for the week.....
      Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
      Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

      "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

      Comment


        #4
        Gabriella, the forgetfulness that you have mentioned in the past that your husband is having doesn't fit the ALS does it? I never heard that was part of it, though I guess there could be two things.

        Will share my whine later.
        Virginia

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          #5
          Virginia, You are correct as forgetfulness is not ALS connected but as you say it could be another problem. He has had carotid artery occlusion for a long time and in the consult with his vascular doc we brought this question up and it is not a result of the left carotid artery being blocked 100%. The vascular doc say it is something wrong in the frontalcortex of the brain and I have read of frontalcortex dementia.

          Most ALS patients are diagnosed at an earlier age......so here we go again with age as a cause of something else. His memory problem is very strange as he remembers the most important details but forgets something that was just said. His hearing is also a factor as he has to wear a hearing aid and sometimes he forgets it.

          Gabriella
          Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
          Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

          "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

          Comment


            #6
            Pass the cheese please...

            I too, am tired of people saying to me 'But you LOOK so good', well I don't FEEL so good. I haven't been able to clean my house for over 10 years! I'm lucky to have such understanding daughters - and such a wonderful husband. I'm beside myself with anger at how the magazines and literature I get all the time supposedly show people with MS riding a bike, hiking, climbing mountains,etc...
            Heck, just climbing the 7 stairs up to the bedroom tires me out so much, I don't go downstairs anymore unless we have a reason for me to go out. I don't know how long it's been since I've seen my living room.
            I had always prided myself on having a positive attitude about MS, I have MS, it's incurable good would whining and *****ing about it do - but that is getting harder to feel that way. I too, feel there is a cure for MS, but we are just not being told about it.The $$$$ the pharma companie$ make on the drugs used to control our symptoms are making them too much $$$ to let us know there is a cure.
            I just feel so....AARGH!!!!!!!!!!!!!!!!!!!!!!!

            Comment


              #7
              Hi debbiemoller, and welcome (back?)--

              I seem to recall your name from a while back, or maybe I just think I do. Anyway, welcome!

              I don't think a cure is being hidden from us. I do think that neurological diseases are very hard to find cures for.

              As for those people who keep saying you look so well, many do mean it as a compliment--a way of saying, "How do you do it-- manage to look so well in spite of a chronic disorder?"

              --Which reminds me of yesterday's Garfield comic:

              Only registered and activated users can see links., Click Here To Register...
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

              Comment


                #8
                Welcome DebbieM, nice to meet you. So sorry for your pain.

                Agate, love the cartoon...LOL!
                Love, Sally


                "The best way out is always through". Robert Frost






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