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    #16
    I have considered going to a therapist but the thing is I don’t know how I can get over the humiliation that this curse causes. And like I have said I will NEVER accept this. I can’t imagine living in this much pain for another 30-40 or even 50 years. I have my 10 year plan… I am only hoping this disease doesn’t ruin it. I would hate to be at a point to where I can’t do anything. I have all the things signed to not keep me alive on life support, but to me even being unable to think normally aren’t living.
    And I should be ashamed because I am not going to be able to function in a few years (5 , 10 , 20). I am going to be in an assisted living facility when I should be enjoying my retirement. I feel that people will look at me and think defiantly of me. I think everyone at work would always be checking everything I do and not trust me to work on living creatures. The shame comes from the fact that I feel like I will never be all the things I dreamed about and wanted for so long. I can’t explain WHY I gave up on my dreams to people, but I feel like they would just view me as a person with a rotted brain who shouldn’t be working with living creatures.

    I think “cog fog” is my biggest fear. (Besides the blind/paralyzed thing). I would have to go on disability because I am terrified everyday now that my mind is going to go and I am going to accidently hurt a patient. How would I explain that to the owners? Sorry but I was to selfish to go on disability and my rotted brain made me accidently caused your dog to die…

    And no I would not be humiliated about being diabetic… maybe heart failure. I do not mean to offend anyone by this next thing but I honestly feel like I am defective and should not have ever been born. I know I will never get past this feeling. I know what end stage of this curse looks like and I would not wish that on anyone.

    I think I have been in the bargaining stage and anger and depression for the past year. It is REALLY bad this week since this is when in my mind my life ended a year ago. I would honestly give ANYTHING if I could just not know I had this and live in ignorance that my body is slowly rotting away.

    Hopefully my new neurologist will be a decent human being and not a grouchy bitter man like the last one. I swear if I ever treated my patients half as bad as he treated me I would be fired and lose my license. I think he is what made me feel 10 times worse than I already did which I didn’t think was possible.


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      #17
      Originally posted by Daisycat View Post
      And I should be ashamed because I am not going to be able to function in a few years (5 , 10 , 20). I am going to be in an assisted living facility when I should be enjoying my retirement. I feel that people will look at me and think defiantly of me. I think everyone at work would always be checking everything I do and not trust me to work on living creatures. The shame comes from the fact that I feel like I will never be all the things I dreamed about and wanted for so long. I can’t explain WHY I gave up on my dreams to people, but I feel like they would just view me as a person with a rotted brain who shouldn’t be working with living creatures.
      You will be functioning in 10 years. This isn't the 1950s... there are meds, and one will work for you, even if you're PPMS.

      You fear cog fog for a good reason. I play around with programming at times, but have had to let up on that a little lately. The fog's most annoying angle is that it comes and goes. The saving grace I do also know about the fog is that if the job is important enough to you, you won't make a mistake... you'll put it down first and hopefully leave the job to someone else.

      Another thing to keep in mind is that depression and a variety of other things come with MS. You are your biggest and worst detractor. Seems like a big think for me to say, but trust me... I know depression *very* well.

      Comment


        #18
        Why so negative? so many people here have had ms for 20 years,with no medications,and still they function...what makes you believe you will end up in a home in these days when ms is becoming better and better treated?

        do i wish i never found about ms? yes of course,but could my brain scan show something much worse? yes it could!

        Comment


          #19
          I dread the day I have to quit my job because my "cog fog" has got to bad. My whole life was about being the best I could be professionally since I have never wanted kids. Without my job i have nothing since I won;t be able to save for my animal rescue I wanted.

          And I am not negative... I am realistic. Some people get lucky enough to not have issues but since all I have is Dr google I am going by what I find there.

          Comment


            #20
            Doc Google is okay, but you need a real one sometimes.

            Cog fog (at least for me) doesn't seem to get worse now that I'm on a correct med. It gets better, gets worse, but not in a permanent way. I get the impression that you're making a "worst case" plan and might be ignoring the best case. Being realistic, that will give you a better idea of where in between the two the future will fall.

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              #21
              Daisycat,
              I see your posts as someone who does want to make it better or else you would have curled up in a ball and given up. I too prided myself on my intellect and yes, cog-fog reached the point where I had to quit my job. Thankfully a frugal nature and disability ins. allows me to not worry about finances. Here´s the bright side- the more cognitive reserve you have to start with, the slower the cog-fog damage. Some of the DMTs have a positive influence on cognition.

              I´m on Ocrevus and am optimistic that the cog-fog does not get worse. You are not a one trick pony- you have other talents that you can share with your community and your community as you define it now, dogs and cats, may change as you hone other skills. If one were to follow your shame argument, then someone with Down´s Syndrome should be wallowing in it. Doesn´t make much sense to me. Yes, I´ve done some stupid things that in the past would have never happened, I now rely on a calculator, I must write stuff down or else it won´t happen, I lose the phone once a day, but I find it too. I sometimes forget to take my supplements but I´ve yet to forget to feed the dog.

              Since the MS dx, I´ve gotten certifications in tai chi, qi gong and yoga. I googled my brains out and learned about neuroscience and nutrition. As much as the dx sucks, you will find yourself learning new things because of it. Maybe you can turn your rescue passion into training dogs for folks with MS- either for balance or as companions. Your executive processing speed may take a hit but your native intelligence will remain. You might benefit from the essay that a parent of a Down´s Syndrome baby wrote:

              The Holland Poem:

              “Welcome To Holland”

              by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

              I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

              When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

              After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

              “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

              But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

              The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

              So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

              It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

              But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

              And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

              But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

              Comment


                #22
                Originally posted by Temagami View Post
                You might benefit from the essay that a parent of a Down´s Syndrome baby wrote:

                The Holland Poem:

                “Welcome To Holland”

                by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

                I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

                When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

                After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

                “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

                But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

                The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

                So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

                It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

                But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

                And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

                But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
                Thank you for sharing this most excellent poem.
                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

                Comment


                  #23
                  Dr google is a dark and dangerous hole to go down. I should know better since I get asked at least once a day about pet advice from dr google. . I do have my worst case plan and the thing that terrifies me is that plan requires certain things and costs a lot of money and if I let myself get to far gone I won’t be able to do it. I don’t want to die but I sure as &(&? don’t want to live in the scenario I’ve come up with. So all I can do is knock everything off my bucket list year by year and wait till the neurologist tells me my curse is progressing or I have a flare that at home rest won’t fix. . I get what you are saying about the holland poem but so far the only plus I’ve found to this curse is my pain tolerance has gone up. Or maybe injecting myself 3 times a week has mace needles not so bad. But real test will be Friday. I’m getting 5 piercings done in my ear and some are supposed to be super painful.... so I guess I’ll see. . And at least my job has amazing disability benefits but I don’t want to ever get to that point. I’m just really hoping my new neurologist is an actual human and not a uncaring piece of garbage.

                  Comment


                    #24
                    Daisycat,

                    You might want to ask the new neuro about more effective meds. If you google the MS icer final evidence report, it has a page with comparative charts of the efficacy and safety risks for the DMTs. You are not on one of the more effective ones. In order to take back a sense of control over your life, please consider looking at Dr. Jelinek´s overcoming ms site. He advises lifestyle changes incorporating meditation, exercise, vitamin D, sun exposure and dietary changes.

                    While there is scientific evidence supporting his approach, even the placebo effect will lower your stress and raise your optimism. Be a dolphin not a jellyfish- don´t let the current of MS determine your life course, use your advocacy to explore and leap into the rainbows once in a while. You might like Julia Cameron´s book The Artist´s Way which uses morning pages, daily journaling, to tap into your creative side. Committing your worries to the page is a form of release. Be a purveyor of kindness to yourself and others. In the end, that´s what matters, not your IQ, test score or salary.

                    Comment


                      #25
                      Shame and humiliation?

                      That is caused by foolish or wring behavior. What behavior of yours caused this that you are ashamed of?

                      I don't get it.
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #26
                        Originally posted by Daisycat View Post
                        I dread the day I have to quit my job because my "cog fog" has got to bad.
                        I still don't have cog fog. I've had MS for almost 17 years. I doubt that even Dr. Google is guaranteeing that you will get it.

                        You are just jumping to a lot of conclusions that likely have no basis. You have a choice. You are choosing poorly. You are not searching for serenity, being courageous, or using wisdom.

                        Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #27
                          My fear with different meds is the immune suppression some cause, lack of decenct financial assistance, and hospital stays. That was the one thing we went over my first visit when I told him those three plus no hair loss (not for vanity but for privacy)... . I did look at all the meds and most of them were disqualified because of one of the things above. Maybe I missed one but I felt like I looked over them a lot. . And I’m not ashamed of my behavior. I’m ashamed of my brain eventually rotting away. I know if my animal died at a vet clinic and I found out it was because the person had cog issues and the place knew I would sue them for negligence. I’m afraid one day I’ll be that person who makes a mistake. . And I’m searching for a way to get through these next 10ish years. (About how long my dog will probably live) by that time I’ll evaluate where I am mentally and go from there . I also take vitamin d and started working out again since being at my smallest heathy weight is on my bucket list. Too much sun is hard for me because I’m a wimp and I hate being hot. But thankfully it’s coolong of to where I can take my dog on walks. I gotta get her into shape for the “dog race” lol. (Local charity event for the animal shelter). . The only thing I can’t give up is my morning coffee. I’m not a morning person so waking up at 530 isn’t easy.

                          Comment


                            #28
                            I get where you are coming from. When I was first diagnosed I thought it was the worst thing in the world that could happen to me. I wasn’t ready to give up on my hopes and dreams. I also felt very ashamed. Like I was walking around with a big scarlet letter on my forehead letting everyone know I have ms....that I was different....damaged.

                            Now, I just don’t care anymore. I figure we all have to die from something. (Not that ms is a death sentence). I know it might sound bad, but I’m just ready to give up. Sometimes I think it would just be easier. Not sure how much longer I can deal with the stress and overwhelming anxiety I feel at work. I was literally shaking and half in tears driving home from work today as I was replaying the events of the day in my mind and rushing home to get to my second job. It’s a struggle to get out of bed in the mornings and my whole body hurts sometimes. Then I’m worrying about my new insurance not covering my medications.

                            So I don’t know....but the fact that I have ms no longer bothers me. Maybe because I’m at that point where I just don’t care anymore. I’d be ok if I died tomorrow if it were my time to go. I’d never commit suicide, but I’m at a point where I’m just tired of life. It’s probably the depression talking, but that’s where I am right now. I used to have big plans like you. I’ve always wanted to be a neonatal nurse. I adore babies. While I was in nursing school, my clinicals in the hospitals nursery were some of the most amazing times for me. I adored every second of it! Had one semester left and I dropped out. Couldn’t take the stress and anxiety. Now that I have ms....I know I couldn’t do it.

                            I disappointed a lot of people including my parents who had hopes that I’d soon graduate. No one was more disappointed than myself though. I eventually finished school though...just with a different degree. Psychology instead of nursing. My dreams then changed. I wanted to be a therapist. I’ve since given up on that too though. I know I’m in no frame of mind to go back to school. I can barely make it through working at the hospital and then the local university part time. Had my sixty day review with my supervisor yesterday who said she’s impressed with my work and how I’m one of her best employees. What good is it though if I’m just stressed and anxious all the time? She asked me how I was doing and liking the job? Of course I lied and said everything was good. I knew it would be bad if I just burst into tears and told her how I really felt.

                            Anyway, all of my babbling really does have a point. Point being, I’m giving up on my dreams not because of ms, but perhaps because of depression. Not saying that’s your reasoning as well.....just thinking it could have something to do with it. Of course I’m sure you are depressed because of the ms diagnosis, but maybe it lies even deeper than that. So regardless, perhaps talking to a therapist could help? I’ve always said I could benefit from it myself....just kept putting it off, but maybe it’s time.

                            Maybe I’m not making any sense and what I’ve said might not help you at all. But I just feel like I can relate somewhat and it helped me to vent. Regardless, I’m sorry you’re feeling this way...it sucks I know.



                            “Keep your face to the sun and you will never see the shadows.”
                            ― Helen Keller

                            Comment


                              #29
                              Ladybug I get what you are saying 100%. I am very depressed because of this. I just don’t care about much. It all seems so pointless. I’m not one who could commit suicide myself at home/unassisted and I also don’t want to die. But all Countries aren’t like thIs one and knowing I have options even if I never use them has been a huge comfort.

                              Comment


                                #30
                                I read this about acceptance:

                                When we devote inordinate attention to the things we cannot change, we expend physical, emotional and mental energy that could be directed elsewhere. Accepting that there are some things we cannot change does not make us complacent. It constitutes a leap of faith — an ability to trust, as the prayer goes on to say, “that He [or the universe or time] will make all things right if I surrender to His Will.” We thus make the choice to let go and have faith in the outcome.
                                You, Daisycat, are simply wasting your energy and decreasing your quality of life by not accepting this. You're stuck.

                                Accepting it won't make it worse. It will give you the opportunity to work on the next step -- courage. It's time to move on. You are not benefiting from your choice. There is no upside to non-acceptance.
                                ~ Faith
                                MSWorld Volunteer -- Moderator since JUN2012
                                (now a Mimibug)

                                Symptoms began in JAN02
                                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                                .

                                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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