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    ((((((Dave)))))) ~

    I am happy to hear that you are walking to ward off your pain and that you have a loyal dog to encourage you to get out of blackberry patches. And I'm happy that you are avoiding alcohol and drinking green tea instead. All very organic and proactive.

    While I'm not officially a member of this forum, since I have no idea what my spine's condition is, I have had PA/RA for 50 years, and I understand pain, excruciating, unrelenting pain. I've never consulted a physician about my pain, because I don't like the alternatives they offer. So, I just live with it and work through it. As you are doing. I lift my 6'1", 165 lb son up in his bed and tend to all of his needs, because that's our life. I accept that this is how it is for me, for us, and we move forward to get through each day.

    My son is bed bound. His right hip has a rod and 3 pins; his left hip is dust. His legs are windswept, and his torso is deformed. He is in constant pain. Yet, he smiles and greets each day with hope and strength.

    I'm telling you this, not for your empathy or sympathy, but to let you know that I do understand.

    You wrote: "I have seen some of the cliché stuff" here at BT. I'm curious what you mean by that term. Would you provide some examples of what you've seen here, which you find to be clichés?

    I hope that you will continue to follow a natural path toward healing and pain relief. I also hope you carry a cell phone with you when you walk on your farm, just in case you fall into a patch you can't get out of, and your dog doesn't know where to go to get help for you.

    Love & Light,

    Rose
    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    Comment


      I'm not sure but I think that Dave means for "the cliche stuff" to refer to this:

      Then, we got all those posts that clogged the pipe -- "Oh, my little taterhead grandbaby just waved at nothing."

      I understand, those are important things for people who are in pain/confined/etc.

      But, there needed to be a separate forum for that. I advocated for that from the beginning. Sure, a little detour here and there in the medical posts was O.K. and good, but it got to be TOO much.
      Dave, if you're reading this, I recall when there was a dustup about having too many OT threads but that was back when there were many more people here on BT.

      Nowadays there seems to be a hard core of people who are keeping this place going, and the moderators seem to be OK about OT posts as long as they don't constantly dominate the forum. Or at least that's my understanding of the situation.

      As for people posting about their family members, this is a board with real people, not just an information source. WebMD and MedicineNet and several other medical information sites are available to all of us but BT is a forum for people to exchange information and experience.

      While they're here, they often like to reveal more about themselves. I hope you realize that some people have posted on this board for over 10 years before they felt comfortable saying something about themselves. I feel that it is good if people are coming forward as people here, not just as bits of information.

      Of course it can be overdone but I can't recall any established members who have overdone it. I'm talking about the MS forum only--I can't say whether other forums have had a problem.

      There is a lot to be said in favor of OT posts on a forum where the disorder is serious and can be depressing. OT posts--photos, news about a person's family or friends, even just an anecdote about an encounter with a stranger--can lighten up a place that can get fairly grim.

      People here usually have chronic disorders that are a constant source of difficulties. This is our space where we have a blank page for expressing ourselves to others who are in a similar situation. For many here, that is a great treat. For some, it's pretty much their only contact with the world of people. Some of us enjoy the glimpses into other worlds that are provided by OT posts.

      And often, if you read those posts and don't just skim over them, you'll find that there is something about whatever neurological disorder that person has. These disorders have a way of affecting every phase of our lives--our finances, our family and social life, our housing, transportation, diet, you name it.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

      Comment


        Hey guys & gals. It is not just here. Every chat/forum that use to be busy has pretty much died off. I'm not sure why or where people go I honestly wish I did know. As always my pain fluctuates and right now it is one of those times when my legs goes numb after about five minutes so not much fun going on for me sadly. Since I"m back in the dating world it is very fun to have to explain to people...most run as fast as possible lol But that is just part of this life. It is what it is. I hope everyone is having a good Halloween.
        Karen

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          mrsQ, I think they're spending time at Facebook, PINterest, Twitter, Reddit and other sites where you can have your own page(s) and fill up the space with material that is all about you. Naturally that idea appeals to people. But it's hard to carry on any kind of a discussion on those sites, I think.
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

          Comment


            You are right, I'm sure. I spend to much time on Facebook & Pinterest myself. Hope you have had a good day.

            Comment


              Originally posted by mrsQ View Post
              Hey guys & gals. It is not just here. Every chat/forum that use to be busy has pretty much died off. I'm not sure why or where people go I honestly wish I did know. As always my pain fluctuates and right now it is one of those times when my legs goes numb after about five minutes so not much fun going on for me sadly. Since I"m back in the dating world it is very fun to have to explain to people...most run as fast as possible lol But that is just part of this life. It is what it is. I hope everyone is having a good Halloween.
              Karen
              Ah, the old legs numb thing. Know it well. Isn't it fun.

              Yes, dating. Wifey died of cancer back when I was -- what 35 -- right after all my neuro stuff started. That combined with all the spinal issues gave me an excuse to be less than responsible with alcohol. Funny, after some 16 years, I think .. and I know this is tempting fate .. I may have that beast stuffed in the bottle, so to speak

              Anyway, did the dating thing for a long time. But, I think women are more understanding on the whole. Besides, being raised as a "real boy" (just like Pinocchio), I never complain to anyone about my numb, burning tingling legs, arms, hands, but if a woman sticks around long enough, they figure it out. That's when the troubles usually arise (why don't you communicate -- that's a favorite).

              Anyway, pretty much given the whole thing up. And, with the alcohol use it was not going well anyway. But, having been pretty much sober for mucho months (whoo--hoo -- celebrate when it has been several years), I have given it some thought, but then thought again. No chance.

              Anyway, just one of my many rambles. I do sincerely wish you success!!
              dave

              Last edited by HellBoundTroll; 11-14-2016, 12:54 PM.

              Comment


                Hi Mark! With the transition back in 07 or so Rockhound became gracie. I am glad to see a familiar name here!! I guess Thoracic Park disappeared because I haven't received an email from there in several years, unless I got dropped. I just don't know. I was thinking about you yesterday because my son mentioned TOS and surgery for it. I know he has thoracic issues but I really think his worst pain is from his blown C5-6 & 6-7. I was thinking about trying to track you down to talk with him before he even approached his orthopaedic surgeon about his thoracic. Anyway, hi and I hope you are doing well.
                Gayle

                Comment


                  Brigitte, I realize it's been 6 years since you posted about your arm pain, but...were you able to identify and resolve the problem? Your symptoms sound identical to mine when my C6-7 went symptomatic on me. I wound up with a 2-level artificial disc replacement that totally resolved the problems. We already knew C5-6 needed to be replaced and I had a bit of a go round with the surgeon over C6-7 because it looked fine in the MRI. I told him I trusted what my body was telling me over the technology. He insisted on a discogram before he would do 6-7. I had sworn I would never undergo another discogram in this lifetime but gave in. Turned out it was nearly painless because 6-7 was so shot it wouldn't pressurize and the dye simply ran out! He didn't even have the needle out before he said, "We're doing a two level"! I think he learned a lesson that day. I hope your problem is resolved, as well, and you are doing well. Being a Spiny isn't much fun, that's for sure. I was very active here back around 2000-2005 as Rockhound. Still have spine problems but priorities kind of changed after my husband had a serious motorcycle accident.
                  Attached Files
                  Last edited by gracie05; 05-05-2017, 09:05 AM.

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                    Dear Rose, you helped bring me from the depths of despair many times and I will forever be thankful to you. I'm glad you mentioned your Jon. I wanted to ask but was afraid to bring up old scares. I admire you greatly and thank you for your part in keeping this site going. I still have hope. Thanks to all that has worked hard to keep things going when some of us wasn't able to come. I can assure you that I was not at FaceBook!!Maybe it has its place but my place isn't there. I love you all, Jo6 s
                    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
                    'cause you are the wind beneath my wings

                    for my brother Ben

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                      ((((((Julia)))))) ~

                      How wonderful to see you posting again! I have missed you, dear friend!

                      I read your other posts on BT today, and I'm so glad that you haven't been in the hospital for awhile. May it continue to be so for you.

                      Bless your heart ~ I'm glad also that I have helped you in any way. Any time you need lifting up, let me know. I'm here for you always.



                      Please visit as often as you are able. I love to see your posts and know how you are.

                      Many prayers for healing, strength, and well being for you ~

                      Love & Light,

                      Rose
                      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                      Comment


                        Anybody home in this bar?

                        The buncha empty stools says the place must be closed.

                        Beerkeep, pour me a cold one... a little more head, please. I like a white mustache when I imbibe...

                        of course you did... I thought so, too.

                        Got any more peanuts? Yeah, the ones in the shells....

                        Because I like them better, that's why! And it keeps barefoot people at bay...

                        Yeah, of course I throw them on the floor! Heck, the janitor needs to have a job, too!

                        More bubbly, Bubba... my mustache is gone.

                        Hell, NO! Well, the Sox broke a 9 game "L" streak and knocked off those highfalutin' Northsiders... but they've gone to crap since 2005.

                        Prob'ly the Buckeyes...

                        They've been spoilin' for a NatChamp game for a coupla years now... I think they'll do it. But, Big M could make it int'resting...

                        Harbaugh has a magic touch... kinda like a "Midas" touch...

                        Regardless, it's time the SEC had some real tussles come playoff time...

                        Okay, I'm outta here... thanks for the chatter... keep the loose stuff... with the empty pace tonight, you need every coin you can pick up off the floor...don't forget to check under the seats in the booths.

                        S'Long...

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