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Is it possible to "Back Burner the Disease"?

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    Is it possible to "Back Burner the Disease"?

    This winning saw must appear in some neurology textbook. I thought when first dxed that it wasn't going to "win" or dominate my life. It would be yet another life altering challenge I would accept with a fighting spirit and focus on victory.

    I told my doctor this week that I wasn't finding any refuge from it, I couldn't use the toilet well, have sex, think, be hopeful about the future, there was no domain in my life unaffected. Just, except for peeing all the time, being unconscious.

    The medical part is so time sucking. This week three dr. appt., double stick for JC (I said do the titer, well she didn't, so I have to get re-stuck and double bill insurance), MRIs two different days, hour commute, hour trying to find a ride, thirty minutes on hold to make appt.s, call back they need approval number even though I got the script, loving call from Biogen concerned that I missed my infusion (but not that I'm getting co-pay bills that they won't help with because my insurance told them they were covering 100%, two hour phone call, recursive loop).

    My dr. interrupts the second paragraph, wanting to script me antiDs. I'm sorry, don't hand out grab bags of Paxil in Triblinka, tear down the [expletive deleted] walls. Finally, this gem of a locution comes out. Why doesn't anyone say HOW to do that?

    #2
    When I was first diagnosed, I back burner ex it for years because I got diagnosed quick and early. The disease initially was quite benign...pure bliss.

    Then it kicked in....

    I am your classic RRMSer. I'm either super bad....or relatively good. I bounce up and down like a pogo stick.

    It takes A LOT of work to try and keep myself in the relatively good category. Both physically and mentally.

    MS is at a minimum a part time job...for some a full time job. I think the same could be said of a lot of the other chronic diseases.
    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

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      #3
      I'm so glad you said this Katie. Lately I've felt like I can't get MS out of my thoughts/life even for just a little break. I wish I could figure out how to forget about it even for just a short time. Just want some freedom. It's too much lately.

      Comment


        #4
        Ugh. Sorry to hear. My neuro hit me with 'new normal' last time I saw him.

        Assuming no new symptoms, I'm done with appts, tests, mri's for a few months and that feels really good.

        At two years in, I may be thinking about it less, or just less intensely. I still hate it, but I'm becoming accustomed.

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          #5
          Going through all that medical appointment is exhausting. Hope it calms down and gets better for you. Dealing with health insurance is probably why I'm flaring right now. 3 days high dose steroids for me. Day one today and I feel fantastic, really I do.

          Things could very well calm down or at least stabilize after the first two years, I had a bad flare 18 months after diagnosis, I was on Avonex which I stayed with. MRI was pretty stable, so who knows?

          I do think of MS every day, but after ten years I have a lot of stratagies for different issues. I'm not as overwhelmed or sad as at first. I'm doing better, knock on my wooden head.

          Hang in there, remember one day at a time. I give myself one goal every day. If I get two goals done great, but only one is doable for sure.

          Comment


            #6
            No buck burner these days. It was fine for a long time, but there's no pretending all is well anymore.
            Love to, can't.

            Comment


              #7
              Although I'm not a big fan of Paxil in general a SSRI might be helpful for some of the depressive symptoms that seem to be both biological and situational in nature with this miserable disease.

              That said I don't think there is a magic answer as to how to beat the natural course of MS. Although I don't discount living a healthy lifestyle-being as active as possible, eating healthy, no smoking, drugs or excessive drinking I do not think that really does too much to change what MS is going to do. Much of it is just dumb luck if you ask me.

              My thought is largely that we need to do what we can to plan for our future and relish our present abilities while we still can because the clock is ticking for us way faster than for most people.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

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                #8
                After six months past diagnosis I thought I was done with the grief process. Then, at a year, I thought the same. Now, nearly 4 years in, I see that I'm still not done, and I may never be done--but I'm in a much better place about it all. I seem to have found my new normal, and I'm OK there. I have to be, so I am. It really does get better, or at least it did for me.

                I hate those weeks where I am the patient, not myself. The steroids, the MRIs, the worries. The wanting to hide and cry and just forget. And then, after, comes the peace of the remission (so far so good), and I breathe deeply again.

                In the first year after diagnosis, I thought I was doing so well, and I was so fatigued. It turned out to be classic depression. I don't actually have fatigue. I'm not saying other people don't, or that we all need antidepressants, but for me, my six months on them was a blessing.

                I learned new thought patterns, and how to not focus on MS all the time. I didn't think I needed them, as I have no history of mental illness, but wow, I needed them and am so glad I took them.

                Anyhow, long story short is that it's a process, it's a hard process, and if you need help, get some help. I resisted for a long time, thining I didn't need the meds--but I did.

                And you might not, but keep an open mind.

                Comment


                  #9
                  Not for me...not for many of us...

                  I am thinking it is not possible to back burner M.S., at least for me. Although many of the symptoms are invisible, this disease is front and center for many of us who have it (have I mentioned that M.S. sucks recently?).
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment


                    #10
                    I put MS on the back burner for many years...like 20.

                    In the last three it has reared it's ugly head and I can't ignore it anymore, but I'm not claiming it. It will NEVER be my MS. It's just MS, a horrible disease that I have and am trying desperately to figure out how manage and what's causing it in my body.

                    I hope I can figure it out so I can put it on the back burner again.
                    Opiegirl, Dx 1991
                    Have never used DMD's.

                    LDN 9/2011-9/2012 & just started again 6/14
                    Estriol 9/12-present
                    Still Hopeful.

                    Comment


                      #11
                      Originally posted by opiegirl View Post
                      I can't ignore it anymore, but I'm not claiming it. It will NEVER be my MS. It's just MS, a horrible disease that I have and am trying desperately to figure out how manage and what's causing it in my body.

                      I hope I can figure it out so I can put it on the back burner again.
                      Unfortunately this stupid disease hit me so hard from the beginning. It was on the front burner, boiling over from the start. Not my MS, either. It was a sneak attack of the once healthy body I used to enjoy. God how I mourn for the healthy Tawanda. I will never achieve acceptance.
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                      Comment


                        #12
                        Back burner?

                        Just coming off of my "21st-year dx anniversary" over this past Memorial Day weekend, I found I was able to "back burner" more easily early on (dx mid-twenties).

                        Early on, I thought the more I achieved and the faster I ran, I could out-pace this MonSter. Four years after my dx (no DMD's then), a follow-up flare sent me back for another MRI that showed very active yet silent disease progression. Neuro said I was "lucky 3 times" and to start Avonex as soon as possible (which I still continue 16 years later).

                        Despite a few relapses (2003 ON and 2007 left-side numbness), I've had stable MRIs yet my MS has continued to slowly decline (or is it age-related. . .mid-forties now?). My fatigue, bladder, balance, and cognitive issues are the worst with a left-side foot drop starting to quickly catch up.

                        After losing my job of twelve years in 2007 and finding no suitable work that I could reasonably maintain in 2008, I found myself applying for SSDI in my early forties. I was approved the first time.

                        I wasn't too happy at first (realized that I was much worse that I portray) yet five years later, I am so happy to be on SSDI. Of course, I am living near poverty level and all my savings was depleted waiting 2 years for Medicare, yet I realize how "lucky" I am.

                        Back burner? Not much anymore, yet I understand how blessed I am. Despite my "swiss cheese" brain filled with many black holes and lesions, I still mostly look so well. And, I don't have to struggle with maintaining full-time employment.

                        Despite your best efforts, MS is like a tattoo and always with you!
                        Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

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