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    #31
    Lengthy rant

    Life as an Adventure

    I'm 59, female, 5 ft. 4in. and weigh more than ever at 140lbs. In 2007 I was DX with RRMS, as of February 2012, I have SPMS. But before 2007, I had a life.... a real adventure.

    I'm told that as a child, I grew up with two beliefs. One... 'don't let it be said that I failed, because I did not try'; so I tried everything. And number Two.... what doesn't kill you, makes you stronger; so I tried very hard to be strong.

    With those two beliefs ruling my life, my parents suffered greatly, both emotionally and financially. As most parents do, they loved me and coached me, worried about my safety and my well being, supported me and encouraged me.

    However, I didn't make it easy on them. Unlike most toddlers, I didn't learn to walk but rather I learned to run...full bore and all out. I was always getting into places and things I shouldn't have.

    By the time I was sixteen, I had been in life threatening anaphylactic shock twice, had a broken arm, a broken leg, a broken clavical, three broken ribs, a broken wrist, four concussions, and two skull fractures. My parents (God rest their souls), suffered through it all.

    Over my lifetime, I've usually had challenging jobs; I loved learning, and I could learn new things quickly and efficiently. If I could have been employed as a student, I'd have been Employee of the year! I taught myself to play the piano, to draw, paint, weld, wood carve, sculpt, and to take photographs. As I said, I liked to learn, so I read as many books as I could to learn whatever had my interest for the moment.

    At one time or another, I was a photojournalist (for 3 newspapers at the same time), a paramedic, a truck driver, a firefighter, a network manager, a taxi driver, a website designer, a pilot, a competive dancer, and a member of a multi-state search and rescue team. I sang in the church choir and at weddings, I was a girl scout and cub scout leader. I was running through life, all out..full bore.

    I drove a long-haul semi across country for a couple of years; I've been in all the continental US except Maine.

    I was an Paramedic. I could work 48 hour shifts, carry a patient, stretcher, and various equipment up two flights of stairs. While living in the Rockies, I was a member of a mountain search and rescue team. I would rock climb and repel off majestic cliffs. I could fly a plane. I could do CPR, start an IV, give meds and use a defibrillator. I could save a life.

    I was a firefighter. I could climb a 2 story ladder on a structure fire and vent the roof with a sawz-all. I could use an axe to break down doors and walls. I could carry a fully-charged 2 inch line into a burning building while wearing 60 lbs of gear. It was a rush, and I had the strength and the will to do it!

    During several natural disasters, including Hurricane Katrina, I spent days without sleep. Our team did search and rescue for people trapped in their homes, for bodies lost to floods, earthquakes, and landslides. I loved when we could save people, and cried when we didn't.

    Not too long ago, I was an artist. Some of my paintings have been on display at area banks, and my woodcarvings and photography have been on display at the US Embassy in Tanzania. I loved not only the physical part of creating but the thought process behind each work. I had a creative mind that could build something unique out scrap.

    I was 'out there'! Not just alive, but 'out there', a part of life, and I could feel it's energy.

    Then MS hit me. I had no strength, no stamina. Hell, somedays I could barely walk.

    Well, ok, I still have a brain...time to learn something new,time to start a new adventure. Use the 'lemons to make lemonaide'.

    I learned about computers and networks. I learned to build/repair computers. I could take small parts and fit them into cramped spaces, hook up a jumble of wires and make a computer come back to life. I understood binary code, and I liked it. I managed a network that provided Internet service to most of the state. I couldn't be in the world, but I was still connected to it, and I made sure everyone else was too.

    That adventure ended about a year ago when my brain turned to mush, when I can barely hug my beautiful husband, when my legs became jello and when my life energy drained away.

    Now, on a good day, I can shuffle out the back door and lift the garden hose to water the flowers.

    Now, on a good day, I can turn my computer on. I can sit for an hour and type on the keyboard and make it readable.

    Now, on a good day, I might be able to hold my camera steady enough to take a picture.

    Now, on a good day, I might be able to use a knife to cut up a vegetable.

    Now, on a good day, I can actually SEE art work and have the presence of mind to appreciate the creativeness and the gift the artist is sharing with us .

    Now, on a good day, I can get out of bed and usually remember to take my meds.

    Now, on a good day, I can give my husband the attention and the hugs he so richly deserves.

    Now, on a good day, when I can think, I remember the 'good old days'. The days of adventure when I could walk without falling, sit without pain, and think without a foggy brain.

    But most days, I'm just too tired.

    Most days, I feel like I need to be defibrilllated.

    I've had an interesting and exciting, adventurous life compared to many women I know. And it is selfish to complain about the pain and disability I have, when others have had it SO much worse and for a lot longer. And missed so many adventures.

    I try to remember a line from a song that goes...

    "If you could, do you think you would, trade it all, all the pain and suffering? Ah, but then you'd miss the beauty of the light upon this earth, and the sweetness of leaving?"

    I don't always remember that I love seeing the light upon this earth, and I don't always remember, that I have, at one time or another, created a little light for someone else.

    Not by only being an artist, or a firefighter, or a medic. But just by Being. By being me.

    But writing this has helped me remember.

    Thanks for listening to my rantings.
    Echo
    DX 2007 Started Ocrevus on 2/14/2018

    "Some where over the rainbow...."

    Comment


      #32
      Dear Echo~ this is the most beautifully written story I've heard in a very long time. You are so courageous! What you have done in your life is so impressive and more than any one (or 2 or 3 or 4) person could hope for!

      Many of us have had to re-evaluate what we were able to do in the past and what we have now in front of us. Me included. I struggled many times to find a balance in my life now. I kicked and screamed and cried. But, just a short time ago I finally decided to not compare anymore, and to really appreciate what I was able to do when I was able to do it!! It was an AHA moment! There are no more tears and heartbreaks. I have SP and that is in front of me now. I am also getting older and gray and wrinkled. But what I have now is all those wonderful past memories and the courage to just be the me that is now.

      I'm so glad you spoke up here! Your words are heartfelt and my wish for you is that you have many, many good days I hope you have thought about writing a book! Seriously!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #33
        Thanks!

        Seasha

        Thank you for your kind words and good wishes regarding 'good days' for me.

        I'm glad you have found balance in your MS journey and your life. I know how hard it is to struggle with what was and what is. But, much like grey hair and wrinkles, MS is a part of our lives and we learn to live.... around it. We do what we can and go on from there.

        Enjoy your memories, but don't forget to make some new ones. Hugs to you!
        Echo
        DX 2007 Started Ocrevus on 2/14/2018

        "Some where over the rainbow...."

        Comment


          #34
          Nice Ranting Echo , You rant for all of us that have "Been There , Done That". Thanks

          Comment


            #35
            Fellow Seniors,

            Has anyone tried Walk Aide for foot drop? I have a definite problem with foot drop but not sure about using this device. It is very visible and I am uncomfortable with something that is so easily seen. Would be happier if it could be worn higher up on the leg and be hidden with pants. OK, I know I am vain but I care how I look. Don't want people asking me too many questions. Thanks.

            Comment


              #36
              Originally posted by maxi View Post
              Fellow Seniors,

              Has anyone tried Walk Aide for foot drop? I have a definite problem with foot drop but not sure about using this device. It is very visible and I am uncomfortable with something that is so easily seen. Would be happier if it could be worn higher up on the leg and be hidden with pants. OK, I know I am vain but I care how I look. Don't want people asking me too many questions. Thanks.
              Hi Maxi~ This is a good question! You might want to pose this question in the General Question and Answer section as it will probably be seen by more people who can answer you. Hope you get some replies and good information! Take care~
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #37
                Longish negative rant - I hate this disease!

                I hate this disease! Unlike much that I have read of from others there is absolutely nothing positive in my experience with the disease.

                Before the long slow advent of it, I had an active enjoyable life and now that life sucks as it's no longer active.
                And the whole thing about "I have MS, it doesn't have me" it doesn't feel like that to me since I feel like I'm firmly in the clutches of MS and from all I've experienced there's nothing much ib the way of help for me.

                I keep reading that a good relationship with a caring doctor is doctors is essential to live well with Multiple Sclerosis.
                Well I have neither, in fact I don't even have a relationship with an uncaring doctor - I have no doctor at all and there are no decent doctors taking patients where I live.

                What I do have is a wonderful husband of 40 years.
                who would lay down his life for me if he thought it would help. He Holds me & listens to me in my misery and depression too but is at a loss of what else to do for me. He has spent hours on the phone looking for a physician all to no avail.

                At my diagnosis last September the neuro told me that he had pretty much figured that I had MS the 1st time he saw me two years ago. He had ordered a thoracic MRI about which he told me at this diagnosis app't that he thought maybe he had seen a lesion back then and that he should have ordered a brain MRI then but well, he hadn't. Nice huh?

                This is after telling my GP of pain & symptoms for over 3 years and finally asking her if I had MS. Only to be told bluntly "No" and her response to my report of bladder controls issues was that this was a typical postmenopausal condition.

                My appointment at the MS Clinic had me seeing another neuro - one of the top in his field in this province - who told me you have SPMS and the best you can do is to try to lose 20 lbs. as that may make you able to keep walking for longer.
                With that I was told to see him in a year from then and after that I was totally on my own as going back to see that uncaring GP was not an option in my books.
                So I'm going to walk in clinics or emergency rooms if I have an issue.

                The MS Society provides a little solace but not much more. The best that I have found there is an on staff physiotherapist/Chinse acupuncture practitioner who is a marvel at relieving me of various neurological pains.
                The support groups have been of little use to me as alll the people who are still walking as I am are years younger than my own 61 - there is so little in common with these people who have RRMS.

                On my own with the internet I have come up with a vitamin, supplement & diet regime as I wasn't told anything helpful by anyone I had seen.
                No idea if it's helping but I'm not about to stop in case it is as my condition really hasn't worsened much since my Dx.

                Other than that my confidence about going out on my own and walking is at an all time low after a few falls.
                Now I'm terrified of going out alone in case I fall.

                So as far as I can see there's no lemonade to be made here.

                Comment


                  #38
                  Before m yMS dx, I did so much. Now I am on SSDI and had a really hard time for awhile. Thought I would be in a better place for many reasons not just MS, but getting through it.

                  My kids always alughed that I would be the "Young" old lady and for awhile I really felt that I wasn't. Now, I am more accepting of my MS, and I am still invited to nights out with dd's friends. My dd's are late 20's and early 30's. The younger one lives in DC and I visit her at least twice a year. Her friends are great and do not ming when I fall alseep during a party. They are concerned about me and always help with carrying stuff, making sure I am with them and if I fall behind, they wait for me. To them, I have had MS since they met me and no one really cares. We have fun together.

                  My older dd lives about 5 minutes away/ I have 2 step grandkids and one of her own. The big kids are really good about me not being able to do some stuff wwith them, and the little one (2 yrs.) comes over, gets 2 canes out of my cane holder, takes one himself, gives me one and directs me to walk grandma...He is so cute with his little cane and me with my big one.

                  Kids are more understandng than some of my friends. I miss work alot and miss being able to get in my car and drive more than 5 miles from home, but I am getting used to it.

                  Dh commented the other day how I have not let this MonSter get to me. I am traveling and dh and I are doing little things together again.

                  Aging with MS is difficult, but aging in this economy is difficult anyway. I am back to being my old self and accepting the fact that I cannot do what I thought I would be doing at this age, but I will do what I can and try not to let my MS define me.

                  I have a good dh of 39 yrs, 2 great kids and 3 grandkids, what more could I ask for at 61?

                  I miss cooking Thanksgiving dinner and putting up my houses at Chrstmas, but now my dd's do it and it is time to pass on those duties to them anyway.

                  I loose my train of thought as I type, so I hope this was not too rambling.

                  JudySz

                  Comment


                    #39
                    I am glad this thread resurfaced. I have read every post with great interest and wish to thank all of you for your sincerity, honesty and frankness.

                    I was diagnosed in 2001 at 53 yrs old. In the first 5-6 year after my diagnosis I had several relapses and then seemed to have leveled off to a more normal existence except for major fatigue and some residual right side weakness. This past year it seems that the MonSter is taking over. Fatigue continues to be insurmountable...I take Provigil and a lot supplements that just don't seem to make a difference...and I am now racked with pain.

                    If I walk more than 10 minutes, my legs just refuse to move. I have zero stamina. I still have mobility but it is limited by the stiffening of my legs and my ability to get my engines revving. Not what I expected to be dealing with at 64...but I choose to look at what I have been dealt as an opportunity to explore new ways to live.

                    My husband of 44 years, despite his major health issues, is my main source of support and understanding. At times we will just crack up laughing because it is so pathetic how hard it is for either of us to do the simplest thing and then we are both grateful for the days that we can be there for each other...it works best when we both are having a good day or when one of us is up to help the one that's down.

                    I have 2 grown kids, a daughter with one girl and a son with 2 girls...my kids are very busy with their own lives and making sure that their children have every opportunity to grow up to be remarkable people....and the girlies are the greatest joy of my life.

                    I have adopted a mantra that comes from a dear friend who lost her MS battle from PML...I have good days, bad days and weird days...I have added,,,and so does everyone else.

                    I resist comparing myself to others, both healthy and afflicted...this is my journey and it is unlike anyone elses.

                    Love to all here that offer and need help...thank you for being here.
                    Angela Dx RRMS 7/2001; Copaxone 9/2001

                    Comment


                      #40
                      Proud of it

                      I think of all the things I've seen and done in my life. It's amazing. I like being older. I'm just approaching 60. I'm on Medicare and all those things, too.

                      About 3 or 4 years ago I started developing bladder problems. The urologist was horrified that my bladder holds 3 liters because I was retaining so much. I had to start the cathing but I told myself, 'I can handle this as long as it isn't MS.' Then I started to lose strength in my right leg and couldn't stop worrying about MS so I went to a neurologist.

                      Everything happened so fast. The MRI, spinal tap, then in the hospital for my first ON attack, then a flare that put me at SPMS.

                      My neuro says I am her oldest patient. I like that.

                      In so many cultures age is a sign of respect. We do have wisdom. Good times, rough times and always new things to learn.

                      One thing that irritates me is that they are now targeting seniors for selling their medications. Now, seniors are criminal. OMG

                      The hardest part about getting older and having MS is that I know my son carries a sadness. I want him to have a full life with his school and friends. I'm trying to manage myself, but I finally told him that I may need his help soon managing financial things. He has been so good to me even though he is in school full time, working, and full time playing.

                      One thing that is confusing for me and for my ten million doctors is that when a symptom comes we don't know if it's just age or an MS flare. If I have a stroke, I won't know it.

                      Then I move in with his father who is also aging. I'm planning to help him so our one son doesn't have to worry about both of us.

                      Our generation is going to have to find creative ways to manage. It's not going to be easy.

                      This was a good thread. Everyone had a chance to tell their story.

                      Comment


                        #41
                        I finally read through this thread and am glad I did. It just goes to show how this "lovely" disease is so different with everyone.

                        Personally, my disease has been kicking me in the b... for some time now, but guess that's to be expected after living with it for thirty-six years (22 officially diagnosed). Living alone and in a wheelchair, it's become a very isolated life. I won't say "lonely" because it isn't.....all the time. It's just difficult trying to keep my home running smoothly without the help of someone here to help. The pain is relentless and as someone else mentioned, sorry I forgot who, it's becoming really difficult to pay bills, take care of financial and other planning issues. I do have three children who have families of their own, they live at least an hour away and one across the country. Oh, by the way, I'm 68, still wonder how that happened.

                        If you've read the secondary progressive forum, you'll know I have problems with lymphedema in my lower legs and feet with "weeping" ulcers. Really gross! Also my bladder issues became so bad, I recently had a foley catheter put in. What a blessing to not have to change clothes so often. I'd forgotten how great it is to sleep the normal hours and not wake up "yucky". I'm waiting for the home nurses to bring a leg bag so it's less obvious.

                        Yes, this disease is really the pitts and isn't at all how I'd pictured these "golden years", but as they say, "it is what it is" and I'm trying with all my might to make the best of these remaining years. It's really great hearing from everyone else.....we're not alone after all.

                        ..............FR

                        Comment


                          #42
                          What a great thread. I hadn't read it before, and I appreciate...REALLY appreciate the honesty. It helps to know others are in the same boat.

                          I lived a great life, we, as a family, had wonderful adventures. We only have one son, but he was a near "perfect" kid, achieved a lot, and has married and provided us with a "perfect" daughter in law. My husband is supportive and caring, and does a good job at balancing compassion and speaking the truth (when he thinks I'm having a pity party.)

                          I really am content being at home...which is where I spend most of my time. Me and the dogs keep each other company during the days. And my biggest blessing is I'm still able to work from home via computer. I love my job, and it provides me with distraction and satisfaction...plus fills up the days, even if I am working from my recliner or my bed.

                          What I can't seem to adjust to are the weird symptoms that have no solutions. The volatile BP that takes constant monitoring; the back to back UTIs that even though I've followed ever suggestion from the urologists, can't seem to get under control...and which only add to the other symptoms by causing them to pseudoflare; the tongue spasm that makes it hard to talk for more than 5 minutes without bringing on tongue pain. As someone said in a further up post...good days, bad days, and weird days. Well mostly mine are weird these days, and there seems to be no solutions. I dealt with the not being able to be very mobile, got the pump for the spasticity, learned to work around balance issues, not being able to drive, fatigue...okay I was "handling" that pretty well...but these more recent symptoms just overwhelm me, and life becomes living one day at a time.

                          Getting up in the morning asking for grace to get through the day, going to bed at night thanking for grace to have gotten through the day.

                          Comment


                            #43
                            Well, in typical MS fashion, the foley catheter I had put in didn't last too long. It was great while it lasted, but about three to four weeks in, I developed severe bladder spasms that threw my whole body into spasms. It brought back memories of labor pains......

                            The home nurse who answered my call for help, said she had never seen anything like my reaction before. Of course.....that's our unpredictable disease!!!! My legs would completely stiffen out, my back would arch in a spasm, arms, fingers, etc.......all I could think of was "Get it OUT"!!! Soon as it was out, the spasms stopped. Seeing as I'm in a wheelchair all the time, she thinks the tubing must have gotten a kink somewhere. So now it's back to Silhouettes, wet pants, waking up yucky, etc.

                            I'm still interested in a supra-pubic, but transportation is such a problem. Hoped with the foley, I could use the van service, but without it, I'm not taking a chance if the van travels around for hours!!!! It's so easy for others to make the suggestion............they aren't the ones "peeing" all over themselves.....embarrassing. Any urologist I would see is an hour away as I live in a small town.

                            My legs are still blistered and leaking. There just doesn't seem to be any hope for improvement anywhere. Hard not to become depressed, but I'm sure trying. Hope you are having as good a day as possible.

                            Are we having fun yet???............FR

                            Comment


                              #44
                              Are we having fun yet???

                              .....well I don't know - if you can call having vertigo on my 1st anniversary of Dx with SPMS having fun then I guess I am. It's like the cheapest drunk feeling around.
                              But seriously it's not fun and I'm trying to figure out what to do for it.
                              I really like the honesty expressed on this thread - people saying that this disease isn't a bed of roses. It's not a unch of happy shiny people like I've encountered at some MS Society meetings.
                              It sure helps to know others are in the same boat emotionally - Big Hugs to you all !

                              Comment


                                #45
                                I don't know if I qualify as a senior at 48, (sometimes I feel 82!) but I can so relate to every one of you as I have read every post here.

                                I had my daughter at 21, and I remember thinking, "I'll only be 41 when she's 20. That's pretty good!" Around 42, numbness in my leg that would not go away but only got worse, was the first sign. I finally had my dx in 2008, when I was 44.

                                I was a very active person. I loved being physical. I loved my gardens and digging in the dirt. I love my trees and the woods, the paths through them that I cleared and enjoyed walking on every day.

                                Now I have difficulty walking on unpaved surfaces. It's been over a year since I've been in my woods. I truly miss them. Such heartache.

                                Lots of people talk about aging, the aches and pains, the creaking and such, but, I don't really know. I went from a vibrant 40 year-old to someone who has trouble walking, though I do walk (with a stick, "whatever works" as my neuro said) in the park 15 minutes, four times week. I consider that a major accomplishment for which I will take a bow, provided there is something to hold on to.

                                I learned to brush teeth with my left hand because I can't do it with my right. Now my left is giving me some trouble. My signature is an indicator of the progression. I used to have decent, public school handwriting, now I can barely sign my name. I'll be "X"-ing it shortly, I'm sure.

                                In six years, I lost a lot. Lately, I found myself wishing I could do what I saw an able-bodied person doing, "what I would give to do that". Then I thought there is so much I wouldn't give! What am I saying?! For my husband, my daughter, the house we live in, the kitties, all this...yeah...I'll think of other things. Like the blue sky.

                                I don't know what normal aging is, really. You know? But I do know I would trade ms any day, for normal aging.

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