Announcement

Collapse
No announcement yet.

Does attitude matter?

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    Does attitude matter?

    After a great deal of phone calls and a multitude of hoops, and I admit, some histrionics on my part, I am finally scheduled for my first infusion on Monday.

    My family is very excited about this, far more than I am, all I hear in my head is a death knell.

    Does attitude matter when entering into a new treatment? I wasn't this apprehensive with any other treatment. Should I just turn my Pandora station from Blues to Heavy Metal? I don't know how to mentally prepare for this.

    Is it morbid to be updating my will, writing letters to loved ones?


    Fear not for whom the bell tolls it tolls for thee,
    Peace,
    Anna
    Tags: None
    #2
    I find my attitude is so much better when I experience even mild improvement. Since starting ty, my MH=attitude is much better more days than before ty.

    Best of luck with Ty and hope you have great success with it.

    Comment

      #3
      Originally posted by hobbit View Post
      After a great deal of phone calls and a multitude of hoops, and I admit, some histrionics on my part, I am finally scheduled for my first infusion on Monday.

      My family is very excited about this, far more than I am, all I hear in my head is a death knell.

      Does attitude matter when entering into a new treatment? I wasn't this apprehensive with any other treatment. Should I just turn my Pandora station from Blues to Heavy Metal? I don't know how to mentally prepare for this.

      Is it morbid to be updating my will, writing letters to loved ones?


      Fear not for whom the bell tolls it tolls for thee,
      Peace,
      Anna

      Anna,

      So many people have posted good results with TY. Yes there are some with not so favorable results, but overall it is welcomed by many.

      As a matter of fact I'm on tecfidera and if / when the time comes when it's not effective, I'll be asking my doc's opinion about TY.

      There are threads with pointers on how to deal with possible side effects when first starting. Hopefully you can prepare just in case.

      Good luck,
      Bree

      Comment

        #4
        It's not about side effects

        I'm use to side effects from Rebif or my own personal pharmacy, not worries about that.

        I think this stems from discussing Ty with my doctor years ago and him declaring I wasn't disabled enough to contradict the possibility of PML. Here I am now and he can't get me on the drug fast enough.

        Every step of this damn disease, I've accepted the loss, the pain, I've adapted and remodeled my mind and body. Now, I'm on a precipice, deciding quality vs. quantity of life, I selfishly want both. Silly, perhaps, but also something I can't share with my family. I'm forever reminded how lucky I am.......

        Peace,
        Anna

        Comment

          #5
          Well...I am not sure what you mean by attitude. But...I guess mine sucks too, because not only did I rewrite the Will, I had new Medical Directives written and DNR order completed before I went on TY!

          Then I did not sleep for two days, did not eat, almost passed out and almost puked on the Nurse...I barely missed her! I had to eat and drink before they could go on with the infusion. I asked for some Southern Comfort but The Nurse gave me a choice of Apple Juice or Orange Juice. Oh and Hospital Food...Yummy. They ended up juicing me up with extra Benedryl just so I would chill out. The Chemo patients were keeping me calm. I was the entertainment for the day. And I am Career Military for the love of God! Made the comment that I would rather go back to the Middle East. I have never in my life been so scared...TY turned me into a complete and utter wussy for that first infusion. Ohhhh man...it was embarrassing

          All that drama turned out to be a walk in the park. And when I started feeling better, I did not give two flying flips about PML. I think of it like a Spa Day now! But I ALWAYS eat before I go...seriously important...please make note.

          I am a week behind right now on infusions...just hoping the doctor gives me the thumbs up tomorrow for a Friday infusion.
          Katie
          "Yep, I have MS, and it does have Me!"
          "My MS is a Journey for One."
          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

          Comment

            #6
            I knew hydrating....but eating?

            Hmm. I knew hydrating was important (sticking veins of course), but eating? I'm primarily on a liquid diet because of esophageal dysphasia. My whole system is well.... FUBAR'ed.
            When I do "eat" it is small amounts because I have to wait for the stomach to open, my esophagus will only hold so much. I'll try a smoothie. Thanks for the tip!


            Peace,
            Anna

            Comment

              #7
              hi hobbit, I think today is your Ty day
              For me eating in general is important so one doesn't get light headed not any more meaningful for Tysabri than other reasons.

              I will have #92 this month and am a very grateful Ty user!

              As for positive attitude... I believe that my positive attitude and outlook on life and this "lousy" dis-ease has helped me to remain as healthy as I am! I was dx'd 25 years ago, was starting to head downhill and then almost 7 1/2 years ago came Tysabri - what a difference this lovely med made

              I wish you well and good luck!!
              Linda

              Comment

                #8
                delayed...

                Hi Linda,

                Yesterday was suppose to be the big day but the infusion site cancelled and could not reschedule. Active Source caseworker is livid and is now in the process of switching me to a different infusion site. Still hoping to get started this week.

                I've had MS for twenty years, the past seven have been a downward slope gaining momentum and flying blind! Ty is really my last hope.

                Peace,
                Anna

                Comment

                Previous template Next
                Working...
                X