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    MS sucks

    MS sucks.

    I’m offering a spot here for those to vent their hatred for the horrible disease - Multiple Sclerosis. Or any other debilitating disease for that matter.

    My wife sadly fell ill once again yesterday. And is in the hospital for the zillionth time.

    She was diagnosed in ‘89 in college when we were dating about a year. We married in ‘91. She’s the strongest person I know. And has been putting up with my crap for close to 34 years now. While always seeing the bright side of life and all she has to battle.

    My wife was forced to canes and walkers in the 90’s. And confined permanently to a wheelchair in the early 2000’s. And left to deal with the hundreds of life altering effects and side effects of MS.

    MS sucks.

    She doesn't let it stop her from still getting out. We hit bars, casinos, shows, Vegas, nyc, etc as best and as much as we can, and way more than most. Although it defines many of our troubles to do certain things, It doesn’t define her as a person.

    Enjoy the good things in life folks. The little things. See the glass half full. Take advantage of good times in whatever you enjoy.

    So I’m just rambling a bit. Me and the cat on the couch. Needed to vent and ramble a bit....

    MS sucks.


    #2
    Sorry to hear about the struggle your wife and you have been going through. Her resolve is admirable. My step-daughter is 35 years old, and was diagnosed with MS last year. She has experienced limited impairment thus far, but we know there will be more daunting challenges as the disease progresses. Wishing you and your wife strength and hope as you fight on.

    Comment


      #3
      No need to be sorry for rambling and huge respect to you and your wife for how you are and have been dealing with this!

      I guess every home has it's cross to bear.

      My wife (46) was diagnosed with metastases from melanoma in predominantly the liver at the end of October last year. Unfortunately this means the cancer is uncurable. She's going through immunity therapy treatments currently. She's had two and has two more to go in the coming 9 weeks. The chances of this treatment catching on is 50/50, and catching on means that your life expectancy is 5 years or more. Which is a huge medical improvement compared to 10 years ago when the chance of 5 years or more life expectancy was only around 10%. But how much of a medical wonder this is, it means zero to one personally when you end up in the wrong 50%.

      12 weeks after the first treatment a CT scan will reveal whether the treatment has caught on. There are some positive indications now, because after the first treatment her liver values and tumor marker went back from being way too high, to being normal. But only the CT scan after 12 weeks will give certainty.

      With two kids of 10 and 12 the last few months have been extremely emotional and rough. The realisation that even in the most positive case she has like another 10 years is just so hard to fathom. But on the other hand, if she makes that, there is a chance treatments have progressed as well. So we're trying to stay positive, also for the kids, but some days this is difficult and you can't always be positive. The hurt and grief need to be worked through as well.

      So, MS sucks, cancer sucks, but as you say, you do start to appreciate the little things, especially the family moments spend together. And on some days you're already doing great by just hanging in there. But there's no denying that something major as these illnesses put in perspective what really matters in life. In a strange, peculiar way that is something I'm thankful for.
      Last edited by Mr. Holland; 02-05-2022, 04:23 AM.

      Comment


        #4
        Originally posted by Roundabob View Post
        Sorry to hear about the struggle your wife and you have been going through. Her resolve is admirable. My step-daughter is 35 years old, and was diagnosed with MS last year. She has experienced limited impairment thus far, but we know there will be more daunting challenges as the disease progresses. Wishing you and your wife strength and hope as you fight on.
        Thank you. Best wishes to your step-daughter. My hope is that the treatments available now can greatly help her in limiting and stemming the effects!!! There is a lot out there now - many choices and options to try - tonsee what is best. Good luck!!!!!! Don’t let it stop her from doing anything !

        Comment


          #5
          Aww, hang in there!

          Comment


            #6
            Originally posted by Mr. Holland View Post
            No need to be sorry for rambling and huge respect to you and your wife for how you are and have been dealing with this!

            I guess every home has it's cross to bear.

            My wife (46) was diagnosed with metastases from melanoma in predominantly the liver at the end of October last year. Unfortunately this means the cancer is uncurable. She's going through immunity therapy treatments currently. She's had two and has two more to go in the coming 9 weeks. The chances of this treatment catching on is 50/50, and catching on means that your life expectancy is 5 years or more. Which is a huge medical improvement compared to 10 years ago when the chance of 5 years or more life expectancy was only around 10%. But how much of a medical wonder this is, it means zero to one personally when you end up in the wrong 50%.

            12 weeks after the first treatment a CT scan will reveal whether the treatment has caught on. There are some positive indications now, because after the first treatment her liver values and tumor marker went back from being way too high, to being normal. But only the CT scan after 12 weeks will give certainty.

            With two kids of 10 and 12 the last few months have been extremely emotional and rough. The realisation that even in the most positive case she has like another 10 years is just so hard to fathom. But on the other hand, if she makes that, there is a chance treatments have progressed as well. So we're trying to stay positive, also for the kids, but some days this is difficult and you can't always be positive. The hurt and grief need to be worked through as well.

            So, MS sucks, cancer sucks, but as you say, you do start to appreciate the little things, especially the family moments spend together. And on some days you're already doing great by just hanging in there. But there's no denying that something major as these illnesses put in perspective what really matters in life. In a strange, peculiar way that is something I'm thankful for.
            My best to you and your wife and family. What you are dealing with and experiencing is hard to comprehend.

            These diseases truly suck!

            Sending good vibes for many many many more years!!!



            Comment


              #7
              Man, I had no idea all of this has been going on while we were chatting recently. It really breaks my heart to read this. Relish all of these good days my friend. They are diamonds in your hand. Really hoping for good news for you guys. I think your perspective and outlook on this is the best you can have.

              Comment


                #8
                My heart goes out to all of you. MS is horrible - my brother was diagnosed in his 50s, I think we all found it hard to accept because he had always been so fit and active - loved sports, even ran marathons. The one thing it hasn't taken away is his love for music - he's the main reason I'm into Yes, and he bought me my first (toy) guitar

                Comment


                  #9
                  Thx. My best To your brother. I truly know how tough ms can be in men diagnosed later in life. Glad he has good folks around him!!!! And enjoys what he can still do. Glass half full!!! And roll with the punches best you can.

                  I got some some good news today. My wife gets to come home tomorrow. Whoo hoo! 😊😊😊

                  Comment


                    #10
                    Originally posted by Gtkgasman View Post
                    Thx. My best To your brother. I truly know how tough ms can be in men diagnosed later in life. Glad he has good folks around him!!!! And enjoys what he can still do. Glass half full!!! And roll with the punches best you can.

                    I got some some good news today. My wife gets to come home tomorrow. Whoo hoo! 😊😊😊
                    There is some hope to maybe at least make MS somewhat more bearable or maybe even to cure it to some extend sooner than one hoped through new discoveries through covid-vaccines. The company in my country that developed the Biontech-vaccine - you call it Pfizer - for example has hope to have something in the nearer future. Just an example, in many places there is more going on for good, in the US as well...

                    Anyway, my best friends wife has MS and she is doing quite well with the glas-half-full-strategy
                    Last edited by PeterCologne; 02-10-2022, 11:05 AM.

                    Comment


                      #11
                      Originally posted by PeterCologne View Post

                      There is some hope to maybe at least make MS somewhat more bearable or maybe even to cure it to some extend sooner than one hoped through new discoveries through covid-vaccines. The company in my country that developed the Biontech-vaccine - you call it Pfizer - for example has hope to have something in the nearer future. Just an example, in many places there is more going on for good, in the US as well...

                      Anyway, my best friends wife has MS and she is doing quite well with the glas-half-full-strategy
                      Great to hear!! 🤞🤞🤞🤞. Hopefully we
                      got a lot of advances in a lot of diseases out of all the research. And good luck to your friend!

                      Comment


                        #12
                        Originally posted by Mr. Holland View Post
                        No need to be sorry for rambling and huge respect to you and your wife for how you are and have been dealing with this!

                        I guess every home has it's cross to bear.

                        My wife (46) was diagnosed with metastases from melanoma in predominantly the liver at the end of October last year. Unfortunately this means the cancer is uncurable. She's going through immunity therapy treatments currently. She's had two and has two more to go in the coming 9 weeks. The chances of this treatment catching on is 50/50, and catching on means that your life expectancy is 5 years or more. Which is a huge medical improvement compared to 10 years ago when the chance of 5 years or more life expectancy was only around 10%. But how much of a medical wonder this is, it means zero to one personally when you end up in the wrong 50%.

                        12 weeks after the first treatment a CT scan will reveal whether the treatment has caught on. There are some positive indications now, because after the first treatment her liver values and tumor marker went back from being way too high, to being normal. But only the CT scan after 12 weeks will give certainty.

                        With two kids of 10 and 12 the last few months have been extremely emotional and rough. The realisation that even in the most positive case she has like another 10 years is just so hard to fathom. But on the other hand, if she makes that, there is a chance treatments have progressed as well. So we're trying to stay positive, also for the kids, but some days this is difficult and you can't always be positive. The hurt and grief need to be worked through as well.

                        So, MS sucks, cancer sucks, but as you say, you do start to appreciate the little things, especially the family moments spend together. And on some days you're already doing great by just hanging in there. But there's no denying that something major as these illnesses put in perspective what really matters in life. In a strange, peculiar way that is something I'm thankful for.
                        So sorry to hear this Mr. Holland. I know of someone with melanoma on the brain. The man is in his early 50's . He went thru immunity therapy a few years ago and it appears so far the cancer is eradicated.

                        If it does not work is a liver transplant an option?

                        Comment


                          #13
                          Originally posted by Gtkgasman View Post
                          MS sucks.

                          I’m offering a spot here for those to vent their hatred for the horrible disease - Multiple Sclerosis. Or any other debilitating disease for that matter.

                          My wife sadly fell ill once again yesterday. And is in the hospital for the zillionth time.

                          She was diagnosed in ‘89 in college when we were dating about a year. We married in ‘91. She’s the strongest person I know. And has been putting up with my crap for close to 34 years now. While always seeing the bright side of life and all she has to battle.

                          My wife was forced to canes and walkers in the 90’s. And confined permanently to a wheelchair in the early 2000’s. And left to deal with the hundreds of life altering effects and side effects of MS.

                          MS sucks.

                          She doesn't let it stop her from still getting out. We hit bars, casinos, shows, Vegas, nyc, etc as best and as much as we can, and way more than most. Although it defines many of our troubles to do certain things, It doesn’t define her as a person.

                          Enjoy the good things in life folks. The little things. See the glass half full. Take advantage of good times in whatever you enjoy.

                          So I’m just rambling a bit. Me and the cat on the couch. Needed to vent and ramble a bit....

                          MS sucks.

                          Yes it does. Had a lady friend a long time ago die from MS at the age of 26. I think of her often. Sweet , beautiful and nice. And just 26.

                          I wish you and your wife well and never stop fighting

                          Comment


                            #14
                            M.S. certainly, like just about everything else, but there certainly has been more of a focus and research, and perhaps the average doctor, and accessibility just wasn't, and still probably isn't there today for most folks, seems to be effecting more so-called young people, unfortunately, more than ever before.

                            ​​​​​My grandmother's brother had M.S.. Sure, I had heard stories over the years what a strong and amazing man/brother/uncle/great- uncle he was. I did not have the opportunity to meet him, until my younger teenage years, as we were stationed in a few areas of the world, and he lived up north stateside. We came up to visit family, and my grandmother, and grandfather were somehow taking care of him. He was older, but I had never before seen someone frozen in their own body. He was completely stiff, and could not move, let alone talk. I couldn't even imagine. But if you looked into Uncle Dick's eyes, and talked to him, he was there, and he knew everything that was going on. A stronger man than me. I would have wished someone to put me out of my misery if I was in that situation. Really God awful.

                            We all have our own lives, and everything that goes along with it. Try to enjoy every day, one day at a time. There are zero promises, and just so much time we all have. Never be afraid to follow your dreams, and be you.

                            My dad is 86, he just got opened up today and had some bad things removed. But he's eighty-six. That's a longer ride than most. But unlike me, he's never really pushed it. I took my father out recently for his birthday, just the two of us. I have never really been close to my father, or my mother for that matter, honestly my siblings as well, but I did help raise my younger sister, but he is my father. He has some issues now. But we had a good talk. I had been a daredevil from a young age. Folks thought I was being abused with my bruises as a kid..Honestly, I should have probably died from a death by misadventure, dozens of times, at least the possibilities were there, that would have killed, or seriously maimed most folks. I always tried to stay in shape, and think of various scenarios, and what would do in these scenarios. I still do. Has helped me survive often. Life is far too short to be boring. Everyone is wired differently.

                            Anyhow, I probably had the best and most honest talk I've ever had with my dad. He asked me if I ever got scared with some of the high risk things I use to do? I told him no. You can't ever be scared of anything you ever do as an individual. You just have to relax, have a plan to begin with, and if necessary, just slow every thing down, and enjoy the experience. Sometimes, you can be so relaxed, you can have an out of body experience, and watch yourself. What kind of life would it be, if you were ever afraid of living your own? Never say you weren't able to do anything. Now if I could just go back to my seven year old self, and get the opportunity to race a fire-bomb F1 race car back in the 70s, when men were actually men. ;-)

                            My main goal now is to be the best father I can be, and get my junior in high school through six years of college. Would be nice to see a grandchild, but honest ly, I can only work on one day at a time, each and every day, just like everyone else. Embrace the moment/moments, always.

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