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    Kimba..."Really?" great post

    I was reading through Kittysmith's thread and I didn't want to hijack it, so I decided to start another thread.

    Kimba, in one of your posts to Kittysmith you wrote:
    "So many times I wish I had a gigantic sign that read , Really? Do you realize who you are complaining to about THAT?. Once in a great while I'll comment, but since it usually doesn't get anywhere, I have learned to bite my tongue. (Mostly) Everyone feels a need to complain. But, it's even harder to listen to when in comparison, it's really so trivial.

    I've not read many discussions when this point has been made, but I identified with it immediately, as, I imagine, most of us MSers can.

    Muggles (one bloggers name for non MS folk) don't get it and they can't get it because they don't live in our bodies. I understand that, and I don't try to explain. In fact, I try to limit any mention or discussion of my disease to a minimum, and often will redirect the conversation to another topic. I know some feel we must "educate" those who don't know, but I'm weary of that effort. Sort of a "been there, done that" kind of thing, mainly because,over the years, I've seen little fruit come from the sowing of seeds of information about MS.

    BUT when someone looks at me and describes a cramp and implies I couldn't understand how bad it was, or whines about an illness or condition they haven't gotten over, and it's been a WHOLE WEEK. That's when I too would like one of those "Really" signs.

    I never answer back because I'm not one to play illness poker. In fact it mostly makes me chuckle as to how clueless they are (and the sad part is some of these statements come from folks that are close to us and just aren't tuned in, I guess.)

    Kimba, I just wanted to thank you for bringing it up. It made me realize, once again, there is a kinship in this disease, even though each of our journeys is different, we all tend to deal with the same issues.

    Bill Engvall (a stand up comedian) has a routine he calls, "Here's Your Sign." His sign is one that says "I'm stupid." (if you want a laugh look at his youtube video called Bill Envall Stupid People.)

    Maybe we MS folk could make up signs that say "Really."

    #2
    Yes so true! BUT I am a firm believer that even we, do not each other's symptoms or form of suffering, our family/friends have no idea. MS is not exactly the same.

    So I believe if we want others to know (our choice or not) we need to inform them. What I have done is update my family and very close friends of any major diagnoses with updates since I have several disorders and things wrong with me. I don't carry on about what symptoms but generalize them.

    I also reassure my family that I am lucky to be doing as well as I can. If I have to, I also let them know what I cannot do or if I need to rest.

    Good discussion though~
    Jan
    I believe in miracles~!
    2004 Benign MS 2008 NOT MS
    Finally DX: RR MS 02.24.10

    Comment


      #3
      Hey Jan,

      How are you doing? Haven't run into you on the board in a long time.

      I, too, have a couple people who know what's going on...my husband and one of my sisters.

      If I remember correctly, you have autonomic dysfunction, and I, too, deal with MS induced arrhythmia and BP issues, so I think that's valuable info that might need to be communicated.

      I wear a medic alert bracelet, mainly because of the pump, and my med allergies. I carry a list of meds, allergies, and what medical issues I have in my wallet.

      My stock answer to others, including my elderly dad and my son and DIL, when asked how I'm doing is "Good." And since "good" is a relative term, I don't feel like I'm misleading anyone. Plus the truth is, those that are close to us know how we're doing without even asking.

      Comment


        #4
        Originally posted by rdmc View Post
        Hey Jan,

        How are you doing? Haven't run into you on the board in a long time.

        I, too, have a couple people who know what's going on...my husband and one of my sisters.

        If I remember correctly, you have autonomic dysfunction, and I, too, deal with MS induced arrhythmia and BP issues, so I think that's valuable info that might need to be communicated.

        I wear a medic alert bracelet, mainly because of the pump, and my med allergies. I carry a list of meds, allergies, and what medical issues I have in my wallet.

        My stock answer to others, including my elderly dad and my son and DIL, when asked how I'm doing is "Good." And since "good" is a relative term, I don't feel like I'm misleading anyone. Plus the truth is, those that are close to us know how we're doing without even asking.
        Hey there~ good to SEE you again!!

        I am doing all right. Just can no longer take my NSAID or ANY pain meds due to having only 1 kidney now. Dealing mostly with spasticity, but I'll live.. and continue to learn.

        YOU? Tell me honestly how you are doing my dear?
        I believe in miracles~!
        2004 Benign MS 2008 NOT MS
        Finally DX: RR MS 02.24.10

        Comment


          #5
          I thought Kimba's reply post was really good, too. Very sensitive, very kind, very understanding. Very tolerant.
          Hopefully it helped the OP.

          Veritably, too many verys. And ooh I have a story to tell...

          Comment


            #6
            Originally posted by mjan View Post
            Hey there~ good to SEE you again!!

            I am doing all right. Just can no longer take my NSAID or ANY pain meds due to having only 1 kidney now. Dealing mostly with spasticity, but I'll live.. and continue to learn.

            YOU? Tell me honestly how you are doing my dear?
            Thanks for asking Jan.

            I'm GOOD........sorry couldn't resist.

            Seriously though, most of my symptoms are being controlled, we finally hit on the right combo of meds for the different autonomic problems. I feel like Alice in Wonderland, a pill for this, another pill for that...but the BP and arrythmia I pretty much treat like that. I take a maintenance dose of a couple BP and heart rate pills....and supplement if the symptoms decide to act up. It's kept me out of the ER for those issues for a couple of years.

            Spasticity continues to march on. But the pump is wonderful, and I can get the level upped. In the past that change in dosage has brought relief for months, now it's more like 6 weeks and the spasticity starts creeping back. Physiatrist says we can keep upping it, but eventually, that will lead to a wheelchair. Right now I have about a 10 minute stamina for standing walking...we'll just have to see if it decides to abate it's downward trend.

            Cranial nerve issues have me still talking fdrunk, and one side of my face is "stuck"...(I can't help but remember what my mom, probably most folk's parents said about making funny faces...."You'd better be careful or they'll stick that way.") Well mine's stuck, but doesn't look too funny. Dentist's appts, saying "cheese" in a photograph, eating a thick hamburger, and trying to sound sober are my biggest challenges from those symptoms.

            Still working full time from home, for which I am eternally grateful. Don't venture out much except for doc appts...but do have folks in. My husband continues to be a great help in taking up the slack of what I can't do...so I do think I can say I'm doing good.

            So, Jan, what's happening with your autonomic dysfunction symptoms? One kidney...I don't think I knew that.

            Not taking pain meds seems like that would be challenging. I use a NSAID topical cream, it's call Voltaren Gel. I have no idea if it would affect kidney function.

            For your spasticity issues, have they ever
            mentioned a Baclofen pump. The thing about the pump, especially since you've got to watch medication reaction and kidney function, is that it bypasses the normal digestion processes of a medication. It drops the med right onto your spinal column, eliminating the side effects, and reducing the dose to an infinitesimal amount. Usually a physiatrist assesses the situation and can make recommendations. So fill me in on how you're really doing.

            Comment


              #7
              Originally posted by Thinkimjob View Post
              I thought Kimba's reply post was really good, too. Very sensitive, very kind, very understanding. Very tolerant.
              Hopefully it helped the OP.

              Veritably, too many verys. And ooh I have a story to tell...
              Think, I believe everything you said was VERY true. Kimba did a great job in her posts.

              Comment


                #8
                Originally posted by rdmc View Post
                Thanks for asking Jan.

                I'm GOOD........sorry couldn't resist.

                Seriously though, most of my symptoms are being controlled, we finally hit on the right combo of meds for the different autonomic problems. I feel like Alice in Wonderland, a pill for this, another pill for that...but the BP and arrythmia I pretty much treat like that. I take a maintenance dose of a couple BP and heart rate pills....and supplement if the symptoms decide to act up. It's kept me out of the ER for those issues for a couple of years.

                Spasticity continues to march on. But the pump is wonderful, and I can get the level upped. In the past that change in dosage has brought relief for months, now it's more like 6 weeks and the spasticity starts creeping back. Physiatrist says we can keep upping it, but eventually, that will lead to a wheelchair. Right now I have about a 10 minute stamina for standing walking...we'll just have to see if it decides to abate it's downward trend.

                Cranial nerve issues have me still talking fdrunk, and one side of my face is "stuck"...(I can't help but remember what my mom, probably most folk's parents said about making funny faces...."You'd better be careful or they'll stick that way.") Well mine's stuck, but doesn't look too funny. Dentist's appts, saying "cheese" in a photograph, eating a thick hamburger, and trying to sound sober are my biggest challenges from those symptoms.

                Still working full time from home, for which I am eternally grateful. Don't venture out much except for doc appts...but do have folks in. My husband continues to be a great help in taking up the slack of what I can't do...so I do think I can say I'm doing good.

                So, Jan, what's happening with your autonomic dysfunction symptoms? One kidney...I don't think I knew that.

                Not taking pain meds seems like that would be challenging. I use a NSAID topical cream, it's call Voltaren Gel. I have no idea if it would affect kidney function.

                For your spasticity issues, have they ever
                mentioned a Baclofen pump. The thing about the pump, especially since you've got to watch medication reaction and kidney function, is that it bypasses the normal digestion processes of a medication. It drops the med right onto your spinal column, eliminating the side effects, and reducing the dose to an infinitesimal amount. Usually a physiatrist assesses the situation and can make recommendations. So fill me in on how you're really doing.
                Yes, I would like to talk to you further re: dysautonomia and Spasticity. Would you mind writing me via my email on my profile?
                Hope you find more improvements ..soon

                Hugs, Jan
                I believe in miracles~!
                2004 Benign MS 2008 NOT MS
                Finally DX: RR MS 02.24.10

                Comment


                  #9
                  Originally posted by mjan View Post
                  Yes, I would like to talk to you further re: dysautonomia and Spasticity. Would you mind writing me via my email on my profile?
                  Hope you find more improvements ..soon

                  Hugs, Jan
                  Hey Jan,

                  I sent you an email...if you don't see it, check your spam folder, your computer might think it's spam.

                  Comment


                    #10
                    Thanks for the kind comments. Just want to say how much I appreciate all of you. I feel like I know so many of you better than people in my "real" life. I'm really glad you are all here for me. It's good to know we can all come here and share the thread of kinship that brought us all here (MS), help each other, and vent when we need to.

                    And no, nothing "muggles" can ever understand.

                    Originally posted by rdmc
                    they can't get it because they don't live in our bodies. I understand that, and I don't try to explain. In fact, I try to limit any mention or discussion of my disease to a minimum, and often will redirect the conversation to another topic. I know some feel we must "educate" those who don't know, but I'm weary of that effort. Sort of a "been there, done that" kind of thing, mainly because,over the years, I've seen little fruit come from the sowing of seeds of information about MS.

                    BUT when someone looks at me and describes a cramp and implies I couldn't understand how bad it was, or whines about an illness or condition they haven't gotten over, and it's been a WHOLE WEEK. That's when I too would like one of those "Really" signs.

                    I never answer back because I'm not one to play illness poker. In fact it mostly makes me chuckle as to how clueless they are (and the sad part is some of these statements come from folks that are close to us and just aren't tuned in, I guess.)
                    Hey there, rdmc

                    Always enjoy hearing from you. You made me chuckle when I read your post. Thanks for that! As always, so nice to know I'm not alone. Sorry to hear about your continued struggles with spasticity, that and your cranial nerve. But, glad to hear you've been staying away from the ER with your autonomic dysfunction.

                    Jan, sorry you only have one kidney. That has to only add to your concerns. I'd be a bigger mess than I already am without NSAIDs and sometimes, pain meds. For now, after multiple tests, one of mine just was put on a "we'll watch it closely for a year" status. A huge sigh of relief! (At least for now.)

                    A new story, Think? Please share!

                    I'm so weary of trying educate certain people in our family circle. This weekend, had a family gathering where somethings came up, and thoughts of having that sign drifted into my head again! So here goes my long post (sorry about that) about the latest round where I wish I had my "Really?" sign ...

                    My mom is one of those people who always brings up whatever ails her (or what has ever ailed her over the course of her lifetime). You'd have to know her, she'd still keep talking about herself regardless of any blinking, neon sign. First thing she asked was how I was doing. I learned a long time ago to answer that question as I'm fine or doing OK. Besides, It's only her intro into whatever she wants to talk about, anyway!

                    For the umpteenth time, she wanted to share one of her bathroom stories. Tells us (again) about how sometimes she has to run to the bathroom. (Not that it's any fun, but least she can still move fast ...).

                    My husband (I wasn't going to mention it) reminds her of the problem I had not too long ago, and how he ended up needing to purchase another pair of pants for me at a gift shop nearby (usually have the opposite problem). She has no clue the daily struggles I have trying to keep that all in balance.

                    But, at least my teenage daughter did get a new pair of leggings out of it! (So fashionable ... black with huge white crosses all over them.)

                    Then one of my sister-in-law's mothers chimes in she must have had the same "bug." (Nope, wasn't even going to attempt going there.) Later, it comes out it really had more to do with something she drank (warm cider). The topic of bananas comes up (I have to explain again why I can't eat them - latex allergy). But, still, maybe they'll help me? Hello? Anyone home? (Here's your sign! ) My sister's mother-in-law proceeds to share how they usually have the opposite effect on her.

                    You might think my mom had a serious medical issue listening to her talk, but then you learn all her GI doctor told her to take was OTC Immodium AD when this happens. She does have diverticolosis, although she only knows of it as having "pockets in her bowels." Good enough, I suppose (although not when she compared herself with a loved one who had a serious bout with C-diff). My one sister-in-law knew better than to bring up her bout with e-coli. Another topic already, p-l-e-a-s-e ?!

                    Meanwhile, a few of us tried to divert the conversation. Didn't work, she wasn't done, so kept returning to her "topic" of interest. It's all really kind of funny, though, since my family members have all gotten that "rolling the eyes" look down pat ...

                    If that wasn't enough, she then asked me to use a bathroom I can't get to anymore. All because she didn't want to get up from where she happened to be sitting. Here I can barely walk, let alone hold my bladder. Her solution - just wear a double brief so I don't have to worry about it. (Here's your sign! Darn, where was mine? )

                    Then, later, found myself trying to educate and defend why I take different medications with the same sister-in-law's mother. Wasn't a topic I brought up or wanted to discuss, but she did, because she had overheard some other conversations with my dad and brother. (My dad drives me to many of my appointments and has sat with me in front of countless doctors).

                    SHE just would never take any of them. "Those drugs are bad for you." (Huh? As if MS is good or you? Where was that "Really" sign at?? ) Totally clueless, she still stood her ground, despite explaining one of my struggles, spasticity - now one arm and hand has decided to join the party. (I guess I didn't really need that replacement baclofen pump surgery after all late this past spring. )

                    I think I'll try to steer clear of her when she shows up at the next family gathering. (Or maybe I should just say, "Here's your sign!" )

                    Some people. Gotta love 'em, but just so not worth expending the effort trying to educate them. Thanks for letting me share. I feel a whole lot better now!

                    P.S. Thanks for the laugh from Bill Engvall. (Had a good time watching some of his videos. Never realized how many he had on the topic of "Stupid People" before!)
                    Kimba

                    “When you change the way you look at things, the things you look at change.” ― Max Planck

                    Comment


                      #11
                      Oh dear KIMBA.. yikes!! I had NO idea that you had to put up with all this from your family!!!!!

                      You are right, they won't get it. They cannot think beyond themselves. Do any of them ever ask how YOU are doing without one-upping you? Not sure if they are trying to "join" you in common symptoms or.. are that narcissistic!!!

                      Anyhoo.. you should be a screen writer for comedy sketches (SNL) or a sitcom~

                      sending YOU a major hug!


                      {{{{{{{ KIMBA }}}}}}}


                      Warmly, Jan
                      I believe in miracles~!
                      2004 Benign MS 2008 NOT MS
                      Finally DX: RR MS 02.24.10

                      Comment

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