Get Used to It

I wrote on Twitter this morning that I am sick and tired of feeling sick and tired. I meant it. The assault by illness on the body is cumulative. Aches and pains add up. Neuro dysfunction places stress on the body in predictable fashion. Lower back weakness brings on pain. Leg weakness strains joints. I don’t know. I made these up. This is not my choice of how to play doctor. I am not going to list my complaints. That would violate self-imposed rules.

Let’s just say, there is not a day when I feel good. I do not mean I am in pain all the time, only that discomfort is a constant companion.  But it adds up. Throw in a healthy dose of fatigue, and, voila. A day here, a day there would be more tolerable than this fulltime job.

How do I get used to this? I don’t.   I cannot. Anybody out there with MS or a host of other illnesses has to know exactly what I am writing about. I am reasonably certain this is a shared experience. I do not complain about it much. This discomfort is programmed into my life by now. I feel bad but hardly notice that I feel bad most days. Ask people living near an airport if they still hear the jets.

This just is who we are.

 

 

77 Responses to Get Used to It

  1. Yvonne September 29, 2015 at 4:48 pm #

    When people ask “how are you feeling ” I say going good so far. My feeling good is so different from most of those asking and changes by the day, hour, minute! An acquaintance pissed me off the other day because she said the dreaded words…YOU DON’T LOOK SICK. My body was kicking my ass that day but I used all my energy to spruce up and make the stupid luncheon for volunteers. I didn’t want to spend the rest of my energy explaining that to her so I smiled and told her she looked well also. My inner voice called her a bitch. 😉

    • Richard M. Cohen September 30, 2015 at 2:13 pm #

      I get it.

      R.

      • Sue in TX October 4, 2015 at 7:17 pm #

        Yvonne, I have tried to silently say many an obscenity in response to ignorant or annoying people ( enough to make a sailor blush ) but the best silent response to an jerk is “you’re a superstar” in a dramAtic imagined tone. in fact it is so good you might stArt laughing. My children have adopted this technique, and give it high marks for dealing with unruliness.

      • rachel October 10, 2015 at 3:18 pm #

        Richard – Will you write us and update us on your work with Sadiq Saud with stem cells? Any change or help and what did the doctor say? I also read there is a physician at Hadassah Hospital who is trying this out with good results. It was an article in Hadassah Magazine. Have you seen this?

    • Laura October 15, 2015 at 4:57 pm #

      Thank you Yvonne, I needed that. Now I have found my smile.

  2. Jan1 September 29, 2015 at 5:54 pm #

    Well, thank you! (A possible response to Yvonne’s clueless friend)… sometimes it doesn’t pay to “toss your pearls to pigs,” meaning attempting to enlighten, but in particular to expect understanding when depth is not present. Personally, I’ve found that those who care will ask meaningful questions subsequently. True friends peel back the appearances (whatever the issue).

    Can’t help but notice the roaring planes — since I can’t change seem to change their trajectories (I try), I just close my ears or wince a bit when the sound gets too thick… and then push on through whatever clearing may come (and however short: at O’Hare, I think the stats are that planes take off/land every 45 seconds. There’s a good analogy in that one somewhere). Richard, I am truly sorry and agree that it stinks. I’m at the point where I don’t even remember what it is like to feel normal, and in many of the ways you mentioned.

    Today, my sister (let’s be easy on her) sent me a video link re Ann Romney, offering what I think is a good MS perspective to those not experiencing it and/or just trying to get an initial overall view: https://goo.gl/LbNFmv (As I mentioned to her, Ann’s name is not new to us: perhaps some of her story is. Or at least is helpful in educating others).

    • Richard M. Cohen September 30, 2015 at 2:17 pm #

      Met her the other night. She looks terrific. She hade gotten knocked down but got up. She is a good face for this illness.

      R.

      • Jan1 September 30, 2015 at 10:44 pm #

        I love “over-comer” stories. Will say that her “being real” made me feel respectful. Yes, agree that she is a good face for this.

      • Amy Corcoran-Hunt October 1, 2015 at 10:33 am #

        Ann Romney spoke with a Boston Globe columnist about her new book a couple days ago. She said she had feared her “inevitable outcome would be me sitting in a wheelchair, incapacitated, dying young.” The subject then moved on, no course correction, no “then I learned…” I use a wheelchair. Despite her careless stigmatization, I am not incapacitated, not decommissioned from a fine life (though certainly not ideal). Like you, Richard, there is not a day when I feel good. But the picture Romney paints is not, in my view, helpful to many of us. I am delighted for her that she’s escaped the ravages. You do wonder how she’d be if she hadn’t. She seems to think we are our fears and our physical frailties. Good thing we’re not.

        • Jan1 October 1, 2015 at 11:04 pm #

          Amy, have to say that I “get” what you are saying. Before that link my sister sent me to the Couric video, it was a “but you look so good; nice for you that you can ride horses; seeing her walk onto a stage-not what I experience; sighs.” Have to say that the snippet of her getting real with her feelings softened my view of her. Each person’s perspective is different, and I try to drill into where each is coming from.

          Although I’m not in a wheechair (unless asked to sit in one to attend things I’d where I’d really struggle without it), most people haven’t a clue as to what my life is really like (and I often don’t even admit it to myself).

          In that interview, she gave a glimpse of the reality of some feelings. But I can also see that having a celeb who can really impart the full reality can be so welcome, so relatable.

          Well now, we do have one, right here on his blog! (Go ahead and groan at that “celeb” thing, Richard–you know what I mean).

          I suppose I’m at the point that I just deal with my own reality and the reality of those I know well. I’ve lived long enough now to know that everyone has something, some struggle. Yes, MS can be horrid, worse than many things. But not as bad as other stuff, either (and I don’t mean that lightly re the MS). Other things, can be, too. So I try to grasp onto the positive.

  3. Dale September 29, 2015 at 11:24 pm #

    I don’t care for the description of MS as being ‘sick’. To me that involves an infection, or something like cancer. Not something slowly and negatively progressive. I often refer to my disability as nerve damage which is true but seems to evoke fewer annoying questions.

    • Richard M. Cohen September 30, 2015 at 2:19 pm #

      I say, a condition. Seems bland enoughl.

      R.

  4. JoanZ September 30, 2015 at 7:34 am #

    “There is not a day when I feel good”

    This is where I am. I’m so sorry Richard.

    • Richard M. Cohen September 30, 2015 at 2:19 pm #

      All in it together.

      R.

  5. Barb O. September 30, 2015 at 11:40 am #

    When people ask “How are you?” My usual reply is ” I’m ok it could be worse it could be better also, but bottom line….
    it could be worse. Am a 64 yr. old woman living 47 yrs. with MS. I enjoy your blog Richard M. Cohen. Keep fighting the good fight I admire your courage.

    • Richard M. Cohen September 30, 2015 at 2:22 pm #

      Thanks. Most people just say, I admire your wife.

      R.

      • Jan1 September 30, 2015 at 10:51 pm #

        Ah, I agree. My words are “issue” and also “nerve damage” (to describe the pain in my feet). Although I use a blue placard, I still can’t stomach “disability” or “handicap.” (Maybe that’s MY issue! Or maybe it just shows how I view those words and need to work on that).

        And I just laughed at your later comment re Meredith, Richard–funny (and another reason why I enjoy reading your blog: insight, humor, and connection).

        • Jan1 September 30, 2015 at 10:55 pm #

          Oh, and I sometimes say with a smile, “I’m breathing!” People who know me enough at my usual stops (grocery, etc.) will then immediately give their own look of dealing with life, of peeling back the outer layer commanded by the store. It’s interesting, and real in a good way.

      • Denise Lanier October 26, 2015 at 12:49 pm #

        Richard, please forgive me for being “glad” & relieved to read your comment that people often tell you how much they admire your wife. It’s just that ever since I was diagnosed with MS (1998), (almost) everybody feels the need & desire to emphatically declare how lucky I am to have “a husband like Gary.”

        And while it’s true that I’m indeed blessed to have my life-partner, it’s also true that there are other messages tucked inside those seemingly upbeat comments of how “lucky” I am to have my husband. There’s the suggestion that a spouse with a chronic illness is a “burden” most partners would’ve abandoned by now. There’s the suggestion that my husband is getting the wrong end of the stick, the worse side of marriage-bargain, that he drew the short straw. There’s the suggestion that it’s by happenstance my husband has stayed married to me, as opposed to mutual, intentional love. There’s the suggestion that, when considering us as a couple, I am the luckier, by default making him the unluckier – as if I won the marriage lotto & he won the marriage booby-prize.

        While it’s true that any chronic stress is trying on a relationship, and while I will admit that the roles my husband & I must often “play” – caregiver & care-receiver, respectively – can be challenging, I vehemently (albeit, virtually & in my imagination only) “bitch-slap” any & all suggestions that I am a less worthy or more lucky partner simply because I have MS. Gary & I chose to become husband & wife, we continue to choose each other, every single day. We are devoted to one another; we take care of another. Apparently, the devotion & caregiving appears (to others) to mostly go one way, from my husband to me – but appearances, as we all know, can be deceiving.

        I am, admittedly, not an average/usual/typical wife (if such a thing even exists). I have MS; I am often fatigued & in pain; I sometimes require assistance for a few of the basics of daily living (though my service dog, Luke, is my primary helper in regard to all things mobility-related); and when my vision acts up, I do need rides to doctor appointments. But none of that makes me less of a person, less of a wife, less of a life-partner. My heart & mind are not disabled; I am as capable of as much love, patience, respect, sense of humor, dedication & devotion as a person without chronic illness and/or varying levels of physical ability.

        I radically reject any notion that I am in any way similar to a once-new-&-shiny just-right item that was picked out & brought home, then later discovered to be defective. Hence, my (in my dreams, only, I promise) sometimes-desire to react with (just a smidge) of sort-of-violence against people who tell me (in different words, but, still, essentially): “Whew, aren’t you a lucky gal; most husbands would’ve run to the hills or returned your damaged-ass-self for a full refund, by now!”

        I admire Meredith very much, for all of her achievements, her talents, for her tremendous compassion & sense of humor. I admire you, Richard, for all of those same reasons. Meredith & you are, indeed, both lucky to have another – just as Gary & I are lucky to have one another. Not because one partner has stayed with the other in spite of MS also being in the picture of our partnerships, but because we are beyond-privileged to have found wicked-smart, smart-ass-funny, mad-talented, wildly-loving-&-lovable partners with which to share our lives.

        So, that’s how I feel about that. (Not that anybody asked me!)

        Thanks for keeping this blog going, Richard. Please keep coming back; please keep writing; please keep sharing your story. Whenever I return to read another post, I find pieces of your story, parts of your journey, that help me feel less alone in my own MS-adventure. (don’t tell your wife or my husband, but) You make an excellent traveling companion; your company makes my own MS “pathways” easier to traverse; your wry humor, raw-honest musing & straight-shootin’ talk make a difference in my life for the better. I’m more grateful for that than you’ll ever know.

        Here’s to luck, love, sharing stories, good company, and choosing to see the funny side of an experience (even when your actual vision is playing an unfair game of keep-away),

        Denise

  6. Sandy Stolaronek September 30, 2015 at 2:34 pm #

    I also don’t ever have a day when I feel good either and I don’t remember what it feels like to feel good. I also don’t remember what happiness feels like or what it feels like to look forward to something. Heck, I can’t handle noise, especially if it’s coming from two different places at once. I wish I could go around with earplugs in my ears all day to drown out the sounds, especially the most annoying ones that sound like nails on a chalk board!

    • Richard M. Cohen September 30, 2015 at 7:32 pm #

      Just try to remember what happiness feels like. The rest will fall into place.

      R.

    • Sue in TX October 4, 2015 at 7:50 pm #

      Sandy, I struggle emotionally, too. But I feel like one needs to catch joy when it flies, as William Blake put it. It’s not a constant, but it’s there. It may be just the delicious taste of key lime pie , or my daughter hugging me, but it does come. It is there.

      • Sue in tx October 4, 2015 at 8:02 pm #

        Sandy, I forgot to add to hang in there. I get your post, I am trying to cAtch joy where I can. Almost seeking a kind of transcendence. I think it’s easier.

        • Sandy Stolaronek October 7, 2015 at 1:57 pm #

          Sue, you’re so right! It’s the little things that we find joy in now, even going to the grocery store can be exciting for me, because I get to look at things that I’d like to buy or try and get a change of scenery. I don’t buy too much anymore and I have to ride in one of the stores electric carts to get around the store. This in itself can be so aggravating and frustrating because sometimes they don’t have much charge or they don’t work properly. I’ve even had to actually call the store to bring me another one, because I’ve gotten stranded in the back of the store when one of them died on me. Sometimes, you can’t always tell if they are going to have enough charge on them to get through the store. I am just thankful to get one and that the store offers them, because without it, I probably wouldn’t be able to go to the store♡

    • Sandy Stolaronek October 7, 2015 at 1:46 pm #

      Richard, I do remember what happiness is, just don’t remember what it feels like, haha! I think we have to try to enjoy any moment that we have that brings us joy, no matter what it is, because these will be the memories that we will build on from here on out. With any luck, our memory banks will hold on to them ♡

  7. Yvonne September 30, 2015 at 8:56 pm #

    Noises are difficult for me also. Volume or depth of sounds make hearing difficult. Accents impossible! Makes conversation a chore and frustrating. Happiness is determined by me but so is unhappiness. So I stay away from situations that can cause unhappiness on days when my frustration level is high. If solitude makes you happy do it. But if you’re choosing to be alone because of a disease you’re not truly happy.

  8. Yvonne September 30, 2015 at 9:05 pm #

    Everytime I post I have to “verify” I’m not a bot and that’s annoying. Copy and paste code each time. Why CAPTCHA verification suddenly

    • Jan1 September 30, 2015 at 11:01 pm #

      I’ll give my own response… because of the hackers out there, there are now extra items in here to avoid unwanted interruptions. (And if you don’t select the right pictures the first time, you aren’t the only one!).

      Will also say that it’s a welcome, benign thing to see after traveling to three countries (by phone) this week and having a few people take over my screen (hours of work) to get all the tech stuff working the way it should. Annoying at times, perhaps, but it is a way different world out there, and I’m grateful to those who know what they’re doing technologically. (Thanks, Brooke).

  9. Dale September 30, 2015 at 11:23 pm #

    Well I’m happy things are edging back to pre hacker days. I’m happiest at night when I’ve survived another day and can jump on here to get my dose of kindred spirit. I do think most of us have forgotten what it feels like to feel ‘normal’. Though I’m not even sure what that is right now.

  10. Yvonne September 30, 2015 at 11:25 pm #

    When you are dealing with challenges every day that make maneuvering life challenging few will welcome one more . I certainly understand technology and as I stated previously if it frustrates you decide if you want to do it. Posting here is great but not a necessary activity so some may not want to add to the daily frustration pool and therefore post less. My observation. That’s all

  11. Betty October 1, 2015 at 11:34 am #

    I’m a 59 year old F, and have been living with MS for 20 years. I watched my sister succumb to this disease. It wasn’t long ago I was posting to this blog from a much stronger position. Standing tall, with bright eyes, a song in my voice, and the wind in my hair I might have proclaimed that I was going to keep trying, keep fighting, keep learning, improving, flossing and smiling; and when asked “how are you doing?” I am (still) known to say things like, “great, it could be worse, or (paraphrasing), “I open my eyes every day, and am thankful, and motivated to keep trying, and to make the best of what I have”. Go me. Really?
    Well friends I didn’t see it coming, or I was looking the other way, or fill in the blank___. Lately my body is a heavy, floating, slippery log, and more than I can manage. Once a catch-all for my physical mal, and dis-function the word “wonky” isn’t working for me anymore. Nothing goes right. My edges are dull, and my sunny spirit is fading. I’m staying in bed later in the morning, and happy to get back in it in the p.m. I’m doing less with less, and accepting it more. I’m interested to talk with others who’ve been on this wheel for 20+ years, for your experiences and perspective. Yes, I have support. I have friends and interests, a good doc, and a chicken in my pot. I’m looking for a light to shine on the long haul.

    • JoanZ October 2, 2015 at 10:40 am #

      Hi Betty, your story is quite like mine. I’m 56, diagnosed 22 years ago, older sister also succumbed days prior to her 55th birthday. I also am sick and tired of being sick and tired. I have fewer years ahead of me than behind, and I’m no longer looking for the miracle. Sounds like giving up, but actually feels liberating.

      • Betty October 2, 2015 at 4:31 pm #

        Liberated. I’m going with that. Thank you Joan. I’ve been, and hope to be a fighter again, but no promises. It wasn’t long ago that I’d jackhammer through the bumps in the road. Lately I’m happy to roll around them. Don’t get me wrong, I don’t (currently) subscribe to the MS Doom and Gloom Magazine. Au contraire, too much sugar coating can send me right out the door, and to the dentist. I visit this blog for candid perspective, empathy and validation. Journeyman (for me) offers a transformative place to morph through the emotional and physical highs and lows of this disease. Epiphanies, hard realities, pain, pleasure, gripes, gains, joys, faith, and failures; I look for it all here. That said, I’ve been missing some former and familiar voices, and hope you haven’t been lost in the hack?!

  12. Jan1 October 1, 2015 at 11:14 pm #

    Betty, after replying to Amy just now (I should be sleeping–busy week, and 6 hours/night is downright dangerous)… but to end my night I appreciate this blog…

    Anyway, I likely have no business responding at year 10 (as I’m kind of in the place you mentioned earlier). Gosh, likely Richard can reply in a meaningful way (and he does so regularly). Will say that he provides inspiration in pressing onward, in his resilient, yet real, attitude. I suppose, at any stage, it is what it is — and all we can do is to work with how we can best handle whatever comes our way at any moment. And, though my body may not cooperate, to maintain a willful spirit of purpose in some way.

  13. Kat October 2, 2015 at 10:14 am #

    Ann Romney does not have my disease. She wears high heels. I can’t relate.

    • Amy Corcoran-Hunt October 2, 2015 at 3:40 pm #

      Funny, I looked at her heels too. Right-eeeo.

      • Betty October 2, 2015 at 5:36 pm #

        Me too re. Ann Romney’s high heels.

        • MB October 4, 2015 at 4:30 pm #

          Triple ditto.

  14. Jan1 October 2, 2015 at 10:34 am #

    …and (shh) I should mention that 6 hours of sleep was on the upper end. And I can’t even remember what it’s like to sleep through then night. Could be MS, age (okay, I’m really not 30 or 40 anymore but often ignore that), or that I drink water too close to sleep time. (Should isolate the variables, likely).

    And Kat, I get that. Even my low heels (1 1/4″) feel too high. The thought of walking up onto a platform would be daunting, indeed. I can barely make it into the grocery without a cart to hang on to.

  15. Joan L October 3, 2015 at 12:54 am #

    What you said. Ditto. No pity, just the facts, man.

  16. Dale October 3, 2015 at 1:52 am #

    I’m so sorry Betty and Joan, MS is debilitating but I thought typically doesn’t kill people. I was told my aunt’s passing from it when she was in her late 40’s was unusual. Maybe that was just feel good pablum from someone trying to be kind.

    • JoanZ October 3, 2015 at 7:50 am #

      Thanks Dale. I’m not a doctor and admittedly this is what I pieced together from the otherside of the country. MS caused my sister to become bedridden, catheter led to multiple UTIs, which led to antibiotic resistance. Dr finally told her husband to think of comfort over cure, I can only guess an infection grew to systemic and that was the end. I’ll never really know for sure. I do know she put up with a lot, don’t think I’d be that tough. Give me the Koolaide please.

  17. Jan1 October 3, 2015 at 9:12 am #

    Dale and Joan, yes, I too have heard that MS is not typically fatal.

    But then again, we’ve all heard stories when it has been (rather exactly as how you described it with your sister, Joan. Very sorry for all of you, truly). For me, it can be rather difficult to grasp that, yes? (Like a lightning bolt).

    So I press on with my perspective of choice. With empathy for those in realizing a very likely true reality. And denial and perseverance here to not dwell and stress more.

  18. Betty October 3, 2015 at 11:14 am #

    In general, I (for one) would like to discuss Rx and coping strategies for the long haul, and what IS working? Especially would like to hear from some of the 20 + yr veterans. I feel like I’ve done, and am doing it all. Looking for a seasonal refresher before the dark days of winter…

  19. Vikki October 4, 2015 at 4:32 pm #

    Hi Betty. I am 46 years old. I had my first visit to a neurologist when I was 17, officially Dx at 23. Have been on five dmd’s, the first being Betaseron in 1994, and currently on Gilenya. I have had two major relapses in the past year which is leading me to try and get approved for Lemtrada, although there is a very distinct possibility it will do nothing for me. I know I am still young but I have had ms 23 years so I can be of any help feel free to reach out,

  20. Vikki October 4, 2015 at 4:34 pm #

    Sorry I meant if I can

  21. Christopher October 4, 2015 at 8:37 pm #

    I haven’t posted here in a while because I have been going through hell. It’s been absolutely terrifying with all of the randomness and inconsistency. I was doing okay for a while, then three huge relapses came one after another. Now I’m in pretty bad shape and have no idea what will happen next–neither do the doctors. Supposedly these were brought on by multiple UTIs. The insane heat wave here in SoCal didn’t help things. I spent my birthday in a mall courtyard, in my powerchair, trying to keep cool and watching my little piece of birthday cheesecake fall apart because I could barely hold a fork. I just got out of the hospital after a four day stay on IV Solumedrol, which basically did nothing but give me bad side effects. I’m sitting on my couch slowly typing, and looking out at a pretty, cloudy sky out my front door and absolutely petrified that it’s going to get worse. I’m on the brink of losing everything. But some little part of me can’t give up. I really don’t have much hope, but I’m not going to just say, “I’ve had it, and I give up!” I’ve thought about it many times… but I think it was just me posturing in my mind to relieve the psychological stress. I was going to start a blog… actually, I did. It was supposed to be a learning place and a gathering place for the MS community at large. I had a whole bunch of entries and information I was about to post before I got sick, but the 99 and 100 degree days overwhelmed my apartment and crashed my computer hard drive. Everything… gone. All that is left now is the very first intro post from a year ago. I really want(ed) to make a difference in peoples lives who have this cruel and sadistic disease. But the disease kicked my ass and mocked my arrogant attempt to show it can be outsmarted. If I’m able to, I still might try even though that may just call more wrath upon me. You may think it’s silly or immature to anthropomorphize multiple sclerosis. But then you may have to also face some very difficult realities about the nature of life without filters… and that’s soul shattering. This is the real MS. It destroys without mercy, and it doesn’t slow down or stop. There is no secret to holding it at bay. You just have to try your best to do everything you can to slow it down, and pray (or whatever you do) that it doesn’t decide to break free and progress unabated.

    I wish the best for everyone here, and everyone suffering out there. Science may yet catch up, but right now we’re still pretty far behind. Enjoy the hell out of every moment. Because it could change in the blink of an eye.

  22. Yvonne October 4, 2015 at 10:59 pm #

    Christopher – we’ve all been there. This disease chronic progressive diseases have no mercy. One day may be ok and the next day week month may be borderline unbearable. The frustration is real and can be worse than the actual exacerbations of the disability. Be angry. Feel cheated. Scream. Cry. Blame your body for forsaking you. But then…find that one damn thing that you can still do and make it your world. Every day celebrate that one thing. And when you’re tired of celebrating it look for something else. MA sucks because everyone else’s mobility around me seems normal and I can’t keep up. So I miss normal also but I’m learning slowly to find my new normal. Everyday is a struggle and a memorial. Hope you can find yours. Now I’m going to select stupid images to post which sucks too but you’re worth the post:-)

  23. Christopher October 5, 2015 at 2:38 am #

    Thank you, Yvonne. My situation is a little more complicated though. I’m not looking for sympathy, just to share my experience for whatever it’s worth. I don’t really have anywhere to go… and that’s one of the things I wrote about and was trying to expose. My job is all I have to keep me going, and if I lose it….

    Social services is way overburdoned to really help anyone beyond passing out pamphlets and dispersing WIC cards. HUD is out of money for Section 8 vouchers, and has a waiting list of over 15 years. There are special apartment complexes for disabled persons, but I make too much money to qualify. If I quit my job to go on disability, I will lose most of my 401k and there’s no guarantee that I will get SSDI payments–which also take months to start since a person has to be unemployed for a while to be considered “disabled.” It’s horrible out there. The system is broke, and politicians act as if they’d rather make sure no one games the system than to secure safety of the most vulnerable. It’s a dog eat dog world and I’m just trying to survive. And… maybe help others along the way if that’s even possible.

  24. Brooke October 5, 2015 at 10:50 am #

    Hi Richard…even when you’re sick and tired, your posts make life bearable for the rest of us! Don’t

  25. Brooke October 5, 2015 at 10:51 am #

    …give up on blogging please, was what I meant to say but I pressed send too soon. UGH!

  26. Barb O. October 5, 2015 at 12:29 pm #

    Hi all…..ist of all let me edit what I wrote initially……have had MS for 37 yrs not 47 yrs (think I hit the wrong key) that being said, I can relate to all of you to different degrees…..this disease is so exasperating, frustrating, unexpecting, gives you no warning (at times), depressing, demoralizing, undignified, emotionally draining pain in the heart & pain in the ass condition that I never thought would inhabit my body & mind. Keep fighting the good fight & know we’re all in this together & thanks again Richard for this blog!

  27. Betty October 5, 2015 at 3:37 pm #

    Thank you Vikki. I so appreciate your response; and Christopher, I have missed you in this space.

    I am mad, and sad and frustrated for us all; for science that is slow, institutions that are broke and broken, and for our days that pass too slowly when time is running short.

    After a few especially hard weeks I was desperate for some trickle of faith, a sign, or the bend of a toe, or hell a good stream of urine would have been nice. What I got instead was an email from a neighbor’s daughter. Hannah is a college freshman.

    “I am writing to you about a class that I am taking called Health Care in America, we had to choose a chronic illness to research and write an essay about. I chose to write about Multiple Sclerosis and I have found a lot of interesting stories and blogs online from people living with MS but I know that you have also done a lot of research on MS as well as have a personal experience with it. I wanted to reach out to you and see if there were any stories that you have learned about that were particularly interesting. Also I would love to hear your story too, if you would like to share it. The essay is supposed to be focused on the patients and looking at the disease through their eyes instead of the eyes of health care”.

    So Hannah and I have been communicating. Her innocence, deep curiosity and empathy move me to share with her as a teacher, and in doing so I’m standing (yes) a little taller for now. I have bombarded her with information; resources, research, my story and your stories, and I haven’t held back. Hannah drew me back from a dark place. (For me, it’s a selfish place I need to stay away from). The timing was just right for the two of us to collide. I like to think this young woman will become someone famous in MS research or biomedical ethics one day. At a minimum I want to see her get an A on her essay.

    So comrades look for the moments, and not the miracles. Christopher, I’m with you. “Enjoy the hell out of every moment. Because it could change in the blink of an eye. … just trying to survive. And… maybe help others along the way if that’s even possible”.

    PS I’ve attached an update on Tcelna. I’m one of the 180 ppl in the two year phase 2b clinical trial for SPMS. I finish up my lab rat tour-of-duty in Feb. 2015. I’ll keep you posted.

    http://www.businesswire.com/news/home/20120912005158/en/Opexa-Initiates-Late-Stage-Clinical-Study-Tcelna#.VhJzsz-FPX4

    • Yvonne October 6, 2015 at 12:52 am #

      Thanks keep us posted Betty. Interesting

  28. Betty October 5, 2015 at 6:49 pm #

    Correction = I will complete the Tcelna study in February of 2016. 

  29. Dale October 5, 2015 at 11:22 pm #

    Christopher you write so well… if you do pursue a blog you should turn it into a book eventually.

  30. Patricia Sullivan October 6, 2015 at 9:38 am #

    What I would give for a good day.

    • Yvonne October 7, 2015 at 9:00 am #

      Patricia I find myself thinking more about “the old good days” now that mobility continues to go downhill. I often think I could deal with five bad days if I knew I would have 2 good days in the week. No such trade off exists because fatigue has nothing to do with how much energy is used. There is no energy reserves for fatigue because it’s a combination of mental and facilitation abilities. I constantly want to do things but I can’t so I’m tired of being tired. As soon as I’ve reconciled one loss another occurs. MS moves faster than logic so again no amount of sunshine and rainbow platitudes make my day any better. Reconciliation ain’t easy with chronic progressive diseases. I’m not doomy just gloomy sometimes and it’s ok. Occasionally the shoes I have to walk in are too tight.

  31. Dale October 6, 2015 at 10:46 pm #

    Betty, my daughter did her high school senior project on MS. Part of it was an interview. I still feel bad when she asked if there were any positives of having this disease I quickly responded NO. I should’ve come out with something more positive. They let her take a wheelchair around school for a day and she actually had some good suggestions for them.
    The MS society gave her a $3000 scholarship, at least one good thing on that front. But good for you taking the time with Hannah. Maybe she will find the cure.

    • Yvonne October 7, 2015 at 10:53 am #

      Dale there are no positives to having a chronic progressive disease. Quite irritated when people try to spin it into positives. It’s like giving every child a trophy even when they lose. Not real life.
      You were honest and realistic with your daughter. Good for you.

  32. Yvonne October 7, 2015 at 9:02 am #

    Thanks for getting rid of the freakin picture verifications 🙂

    • r. cohen October 7, 2015 at 10:35 am #

      Since I was hacked there have been safeguards out on the blog. Unfortunately, uit became impenetrable. Betterr now.

      R.

    • Dale October 8, 2015 at 11:29 pm #

      The pictures were an adventure. they sometimes had a different concept of salad than I did. Gosh it was like a quiz, I’m sure folks worried the door would stay permanently locked if we flunked. Always wondered who comes up with this stuff…..

  33. Terri October 7, 2015 at 4:01 pm #

    Richard,

    I am enjoying your blog. Thanks for being so brave and volunteering for Dr. Sadiq’s stem cell trial. I found your video of the procedure so informative and fascinating. I am a patient of Dr. Sadiq’s, as well, and after much push-back on my part (was going to handle this PPMS MY way), have decided to hand over the reigns to the expert. I can’t wait to attend the symposium next week. Will you be there? I look forward to hearing updates with research and stem cell trial results.
    Tisch will find us a cure!

  34. Dale October 8, 2015 at 11:32 pm #

    Speaking of which we haven’t heard anything about your stem cell treatments in a while Richard….

  35. Andrew October 9, 2015 at 9:20 am #

    Has anyone had experience with the drug Ampyra? It has just been recommended by my neurologist to try to see if it can help my legs feel more secure and less quick to shut down. Another obscenely expensive drug. Usually my drug taking criteria has been that I only want to take something that has been on the market long enough to have lots of data about safety and adverse effects. I may not be a candidate for it if my kidney test doesn’t come back as 100% effective at eliminating the drug, [“Before taking the second of the twice daily doses,which must be exactly 12 hours apart, or bio-accumulation could potentially cause seizures.”] I need to research any potential interactions with my other minimalist medication regimens for my other two “chronic illnesses.” I have, on more than one occasion, had to provide my physicians with information questioning potential medication interactions. I relate to the theme of being sick and tired. Some days I struggle with my attitude about taking and spending so much on pharmaceuticals. But still find myself hopeful that “medicine” might improve something. I have often been helped more than others, who have taken the same drugs as me, for my heart disease and my Crohn’s disease. For many years, the Betaseron injections seemed to delay my MS progression. Some days I think my neighbor, who has had MS (diagnosis) for 8 years longer than me, is right when she said that it’s probably all just one disease that eventually will progress for all of us, just at different rates. My list of “good day” criteria presently involves, beyond assorted MS b.s., not having my blood pressure drop so low that I come to in an ambulance, or not being doubled over with severe Crohn’s pain. Walking and vision problems were long delayed in arriving, but alas, Betti Davis was right, “old age isn’t for sissies.” But I still have many things for which I am truly grateful. If Ampyra could improve my walking, even with the increasingly present safety net of my rollator, I would add it to my gratitude list.

    • JoanZ October 9, 2015 at 10:14 am #

      Andrew,Ampyra is crazy expensive. C check out the Ampyra website, they provide Co-pay assistance and as I recall it was the easiest benefit I ever got. I think I just called and asked, no forms etc.

      My experience with Ampyra didn’t seem to do anything. Good luck!

    • Betty October 9, 2015 at 12:47 pm #

      Andrew,
      You might know that Ampyra is a potassium channel blocker that may give a boost to conduction in damaged nerves. There is good data available to show that it can help some of us. It will matter how advanced the nerve damage, and how well your body will, or will not respond to it. Ampyra worked for me very well when I began taking it 3 years ago. At that time I was walking unassisted, but w/ some wobbles and increasing R foot drag. I took the recommended dose @ every 12 hours, and would definitely notice if I missed a dose, as my leg-lift and walking speed would be greatly diminished. Disease progression over two years has slowed me down greatly. I walk now with two trekking poles, or use a rollator. I am still taking Ampyra, and continue get some benefits; a little extra lift, and slightly better stride, but (by my own design) I’m taking only the a.m. dose. My new logic is: why take it if I’m sleeping, and not walking? Also, I’m saving money, and lightening my medication load. But this is my story. Talk to your doctor to see if Ampyra might work for you. –(sorry, I couldn’t resist that)

  36. Sue in TX October 9, 2015 at 10:07 am #

    Richard, I hope your tweet yesterday means your physical therapy is helping you some. I am also going through PT now and see the odd dichotomy PT brings out. The physical therapist
    puts your body through some paces and declares your core and leg muscles weak! Mildly amusing, But I guess vindicating too because I do still “look really good”
    to others. And now I can say it’s official, I’m weak. ( It might help though if they gave out stickers announcing my weakness. I could wear it in public. ) Also , My PT prescribes exercises which are embarrassingly simple but I’m instructed to not over tire myself and stop if I get to that point. Honestly, MS has taught me to ignore tired, so after PT, I usually need to rest, and then some the next day, like a grandma after the kids have taken her out to dinner for a special occasion. The only problem is that I am half grandma’s age. Nevertheless, I’m told I am improving. I too can walk faster, and farther without looking for a seat. And I relearned how to shift my weight when I sit to stand so I can do it unwoobly. Mostly. But, without my sticker, no one knows. I just “don’t look sick”.

  37. Grandma nancy October 9, 2015 at 2:55 pm #

    Andrew, I gave Ampyra a try. I was hoping to increase my walking speed and foot drop. Unfortunately for me, it made me so dizzy that I couldn’t leave my couch. Obviously, I gave up on that one after about 4 days. I am now using a Walk-Aide to help lift my foot. It helps with the foot drop but not the speed. And it was expensive ($5,000). Medicare didn’t pay because I have MS and not a spinal chord injury – go figure. But as we know everyone’s experiences are different. Good luck with your decision.

  38. Jan1 October 9, 2015 at 6:10 pm #

    Comments:
    1. The neuro who originally diagnosed me 10 years ago at Rush, I understand, was instrumental in developing Ampyra. (Hi, how are you, you have MS, get on Avonex asap and don’t wait too long, even for a second opinion; someday there will be oral meds). I think we are all aware that Ampyra is for walking, unlike traditional CRAB drugs; that there are oral meds out there now… and that I prefer to have no part of any of them (and have never been on interferons. I do sometimes use Lidocaine patches at night on my burning feet, but that’s it).

    2. Should say that I did try LDN years ago (couldn’t tolerate it), some low mg. tricyclics/Neurontin for toe burning (couldn’t tolerate them, either), and an initial free trial of Ampyra (do ask for that—a month, maybe? Try to negotiate if you can), but then I didn’t even try it for too long. I don’t even see it in my personal records (I’ve made a few general notes each month for 10 years). Meds and I are not buddies. (I also hear that doctors often take people off of the hard core meds after a certain longevity or at a certain age–is that true?)

    3. What HAS NOT helped: emotional stress, and overdoing things. Last night, I about melted into bed at 9:30 p.m. (way early for me) after two weeks of stressful computer issues and very detailed learning curves for two new clients. (The curves are over, yea)

    4. What HAS helped: work when I’m mentally challenged (“eustress,” not the former “distress”); breathing deeply; mental calm; faith; swimming. The cool water (and it was just that outdoors today) nearly always makes me feel better. (Read “Blue Mind” by an alum of my H.S.). When the wind is blowing in the right direction (capricious, this disease can be).

    All that said, I think that everyone comes at this from the perspective that works for each. and I try to respect that. Me? I’m usually always hurting, but happy in experimenting with lifestyle and food choices.

    • MB October 9, 2015 at 11:07 pm #

      “1. The neuro who originally diagnosed me 10 years ago at Rush, I understand, was instrumental in developing Ampyra. (Hi, how are you, you have MS, get on Avonex asap and don’t wait too long, even for a second opinion; someday there will be oral meds).”

      I could have said those identical words! Do you still go to him, Jan1?

  39. Jan1 October 10, 2015 at 11:32 am #

    Hi MB, I was thinking that my response was rather long, not sure if I should check back so soon (feeling too stressed)–but I’m glad I did… to answer your Q more specifically MB: May 05:: symptoms began to appear that in June became more clear at a kindly neuroophthalmologist appt after a 5K race in which I felt horrid and had blurry vision in one eye afterward (optic neuritis). Worse (so I thought then), people passed me on the race route who shouldn’t have, and no PR at 26:54–goal was 25 min. I know, I know, that’s all rather meaningless now!)

    Got a cancellation appt. with the Rush Dr.’s P.A. (IL) and he came in at the end for a short while after reviewing my MRI. (Their records that I later requested, were pathetic–handwritten and unclear).

    My husband and I had done our own Dr. Google researches and suspected MS but were rather shocked to get that diagnosis so fast. It was the first and last appt. with that Dr. Found a “wait and see” article from Mayo and got in there in 3 months. So appreciative–neuro there said that, typically, how one presents into the office early is often the course of the disease. (Please don’t let that scare anyone though, okay? I don’t intend to. He even said that there is SO much they don’t know about MS). Oh, and no predictions at all until the 5-year mark; 10 years-even better. (Not really what I wanted to hear, but in looking back it makes good sense).

    My Mayo guy knows how needle-averse I am. Said that they do prescribe the CRAB drugs, but if warranted and on an individual basis. Liked his approach. And he knows how med-sensitive and drug-averse I am. Last visit there was in 2012, when I got bumped into SPMS.

    I have a local neurologist who is very pro-meds but tolerates my not wanting them. Actually, he’s a stitch–a really nice guy. Was pushing Tysabri, and because he saw me so fast when I had my worst flare last Feb. (I requested a 3-day Solu-Medrol string–but I won’t do that again because it was only time that helped. Someone on this blog said something similar about SM not working agani–helpful to read). I said I’d do the free JCV test for him. Turns out I’m a high positive, so he’s leaving me alone on that one!

    Looking back, I’ve tried a number of neurologists along the earlier path. But now, I just get my annual physical as usual and see no need for a neurologist at this time! (Others think I’m crazy, but I know what I know empirically, no need to monitor MRIs if I’m not on meds: $$$). And forgive my rather long answer when likely a simple “no, only that one visit” likely would have been enough!

  40. Jana October 10, 2015 at 2:59 pm #

    Andrew, I also think that you should give Ampyra a try. I have been taking it for 2 1/2 years without any problems. Early this year my insurance decided that they weren’t going to pay for it. I stopped taking it for 2 weeks to see if it really helped me. Long story short, it did help a lot and not just for walking. I appealed their decision and it’s covered now. I also use a Walk-aid for my foot drop and a cane (75% of the time) for balance and fatigue. I was diagnosed in 1985 at the age of 25. There were a few relapses over the years. The last 5 have been more challenging. I had to quit work and make some other life adjustments but I’m doing ok today. Who knows what tomorrow will bring. Good luck!

  41. Jan1 October 10, 2015 at 4:14 pm #

    Jana, you are only a year older than I, but you have weathered this longer–and with a good story re Ampyra for Andrew to consider. Good to hear a positive experience with it.

    I, too, cannot now work full-time, though PT freelance has been good. And as likely with all of us, we just don’t know what tomorrow will bring — and try as we are able to make the best of “now.”

  42. coco October 11, 2015 at 4:20 am #

    Richard, it’s been a while since I’ve read your posts but as usual you hit the nail on the head. “Not a day goes by when i feel good… This is just who we are” …but frankly I don’t want to be able to say I’ve been enduring this for 42 years as if it were a badge – in fact, i don’t even want one more year of feeling the way I do. What I do want is a full body massage that i frequently got before i got ill but that, the chiropractor and PT only tramatize my muscles creating new pain which doesn’t go away so i get no relief cuz I’m allergic to painkillers including morphine given to me in the hospital.. I have polymyositis, a rare muscle disorder and I’ve got discomfort and pain every day, some in the same place some in new places. I never know what’s going to happen next, a rash here, a swollen eye there, a bruise, a mouth full of sores, a jaw ache, an ear ache, a migraine, a new pain in my muscles, my back, my neck, my arms… and I’m constantly hurting myself. I occasionally fall over my own feet, I smacked my ankle on the space heater and the swelling still hasn’t gone away, I leaned over the couch and hurt my ribs, then proceeded to hurt my ribs in the same place 3 more times. First I got AFIB from the anxiety, then Atrial Flutter, first it was meds then an allergic reaction to one of the drugs, then a cardioversion that only lasted 5 months, now i’m going in for the ablation, and .. just when i’m coming up for air I discover some enlarged lymph nodes… It’s tiring, annoying, painful, expensive (I do alternative things that aren’t accepted by my insurance) and not fair.. not to mention I have more doctor numbers in my cell phone than friends… ha ha, of course, life is not fair and “things could be worse”… and why do we always say that like it’s some consolation? Why can’t we be honest with our own feelings with others that what we already have is enough! We are afraid to show others that we suffer because it’ll make them feel uncomfortable or ruin their day. We’re always hiding. Not my problem.. I educate people about my illness, I share my health updates. Most are truly concerned and send me prayers or healing energy and that feeds my phyche and makes me feel less alone. I am alone and do everything myself, which is one reason I believe I’m doing better than others. Along with my positive thinking even through my setbacks. They can’t believe one person can go through so much and tell me how corageous I am, that they could never endure what i do. That makes me feel even stronger but I still want to scream bloody murder sometimes. I still want to have a good cry, something I find hard to do because I’m too exhausted on all fronts. I’ve never been clinically depressed but I did look at my balcony occasionally and wonder.. 😉 but most of the time I look at the spiritual side “it’s all just a lesson”.. but I think that too gives us another excuse to explain it all away.. How about this: one of my long time friends of 45 years recently wrote “It seems most of my friends have a long list of maladies – I feel I should write them down in a notebook to keep a track of them!” NOT funny.. I knew If she were in my position she wouldn’t have said that.. …My response? “Lucky you… things could be worse”.. Lots of healing energy to you Richard…

  43. Sue in TX October 11, 2015 at 3:17 pm #

    Coco, I’m sorry things have been tough for you. I think we can choose to learn from our life experiences but I don’t think our experiences are designed to teach us. Sickness is arbitrary. But what we learn about ourselves and how we grow as result of our suffering is not arbitrary. It is a conscious decision to rise above. I understand that
    Chronic illness is chronic, with no respite. And that is why you jest about your balcony. But know we all are out here dealing with our own illness, which makes you not alone. And it is true, what they say that the sun will rise tomorrow with a new day. Sending more positive energy your way. ..