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My Debut as a Chronic Pain Spokesperson

TracyLynneTTracyLynne Posts: 599
edited 06/11/2012 - 8:24 AM in Good News
I had an absolutely incredible experience last week, and wanted to share it with you.

Several weeks ago, a good friend of mine (a registered nurse who specializes in chronic pain and is now a nursing instructor) invited me to speak to her 2nd year nursing students on the impacts of chronic pain. I was flattered, to say the least, and was really excited at the opportunity.

I didn't quite know how to approach the topic, so I talked a bit about myself, my active childhood, my active years of raising kids, my "Super Mom", "Super Friend" and "Super Wife" attitude and how things have changed since then. To keep their mind on the chronic pain issue itself, I had each of them clip a clothespin to a part of their body where it felt somewhat uncomfortable, and asked them to leave it there until the end of the presentation. I threw in as much humour as possible, showed a poster with photos of friends I've met through various pain clinics, etc. who all look "soooooo good" as a reminder that you "can't judge a chronic pain patient by their cover" and then showed them the meds I use daily, my breakthrough meds and my "extras" for diarrhea, nausea, constipation.....you know the drill! :< I think that is where they had their eyes opened, especially because I looked exceptionally good the day of my presentation. Previous to that, I had spent four or five days with diarrhea, vomiting and nausea; all side effects of one of my new trial drugs, so I was sure to throw that in as well.

The outcome was incredible. I had a good friend go with me, as she has been an amazing caregiver when my hubby is away or at work and has had to help me make medical decisions when my emotions have run away on me. When the instructor called us later with feedback from the students, the words used were "extremely powerful presentation" - I was walking on air for at least two days!! They commented that they will NEVER think of a chronic pain patient quite the same now, and several said they will think of me each time they treat someone with chronic pain. I couldn't ask for more, and can't tell you how satisfying that felt; I'd forgotten what empowerment and self-satisfaction felt like, so it was a HUGE boost.

Several of the students approached us afterwards and we spoke with them; two of them were in tears, and we ended up comforting them. It broke my heart, as one is only 25 and struggling with neck and back problems (I started with neck and back issues at age 22, so I know the frustrations that lay ahead for her), and the other has a young fiance who is very angry after a failed back surgery and is basically setting himself up for self-destruction.

In some small way, I made a difference and reached my goal. As I have now been approved for two levels of disability and no longer have the job I loved, my job NOW is to help educate others with what I have learned over the past 20+ years.

As I was finishing my lecture the other day, I came to the realization that when my pain got out of control, I gave up everything I loved (i.e. sports, crafting, etc.) before I finally had the strength to give up my job.....I've learned something about prioritizing! :))(

Tracy
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13

Comments

  • begun Tracy to see what all of this is for. That gave me a big smile and the chills. I can hardly wait to see what you create with the new energy and enthusiasm you have found. You speak from your heart.
    Hugs,
    Julie
  • I can't think of a better person to represent me! Fantastic job girl!

    "C"
  • What a wonderful opportunity =D>
  • dilaurodilauro ConnecticutPosts: 9,722
    to speak about situations like that. Since I first met you on the old site, I had total respect for you as a person, a member, and a mom.
    From our conversations over that period of time, we've shared a number of laughs, been through some tough times.
    Tracy, your value system and your strength I believe is what helped you get through so many rough times.

    I am so glad that your lecture was so well received.

    Take care
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I really appreciate the kind words and encouragement; it is very exciting to be able to share my experiences with this up and coming generation of medical professionals. One of the things that horrified them was two very negative experiences I've had with so-called "specialists"....it was quite an eye opener for them and helped them begin to understand what "we" deal with.

    I'm thinking I may have to produce a DVD and get into infomercials on late night T.V......."buy my DVD now and we'll throw in a FREE ice pack!!" :D

    Tracy
  • Way to go, girl! It made me smile just to read about what you did and what it did for you personally. I can only imagine the impact you have and will have on those in the medical field. Kudos! And thanks for sharing this. It shows the rest of us that we can turn the teribly things we go through in life into something good!
  • Thanks to all of you for the further encouragement!!

    I want to share some feedback I got from one of the students; it brought tears to my eyes because "she got it".

    I would be honored to give you back some feedback.... I thought that you really brought to the class a good sense of how ones life can be turned upside down by chronic pain. I became aware of the enormous strain that it would bring on a relationship. And could not help think of the (local) woman that committed suicide from the pain that she had to endure from the bear attack she experienced. Its so sad. I also noticed that B.M., who has been suffering from back pain was crying at the end of class because I am assuming she felt she was not alone in her suffering from hearing you talk. I also thought it was really important for us students to hear how many times health care workers had labelled you in times of need and gave the opposite of help. This gave me insight into what or how I would treat someone in the same situation. My father who is 84, has suffered from back and hip pain his whole life . When I was young if I was playing catch with him I would try so hard to throw the ball to him because if I missed he wouldn't be able to get the ball. But until you talked I never really saw it from his side because he never talked about it. I know now he was really suffering. So your talk really gave me insight into a big chunk of my life. Overall I think your talk was really good because it brought up a lot of awareness around chronic pain suffers, and stirred up emotions for myself and others in the class. Way to go... also I am sure it is hard to talk in front of so many people, and to talk about such a personal issue. Thanks for sharing. I hope that helps you out.

    Yes, it was satisfying and I look forward to the next opportunity.

    Tracy
  • A good friend, whom I originally met on this forum, has encouraged and convinced me to produce a video of my presentation. Another friend from the forum offered to help with editing, etc., but I was able to approach our local high school Film and Video instructor, who feels it would be a very worthwhile "public service project" for two of her students!! >:D<

    I'm refining my presentation, so have had some input and suggestions to make it even better, and hope to make the arrangements next week. I am SO excited about this, I can hardly speak. My husband is behind me 100%, which makes it all the more worthwhile; he has suffered as much as I have, because he's the poor guy that sits and watches as things deteriorate and can't do anything but hold me while I cry, or deliver me to the E.R. :''(

    I've said it before and I truly believe that one door closes, another door opens somewhere along the way, and I feel very lucky to have found "the" door!!

    Tracy
  • to speak about your pain, how it affects your life and family life. There are so many people out there that see us pain suffers that think that there is nothing wrong, but we are actually torn up inside.

    I am just recently trying to deal with my pain on a emotional level and also a pain level, it is very hard. I feel selfish, I feel like I shouldn't complain. I am so scared of this pain. I am afraid that I will wake up and not be able to walk. I am also afraid that I will not get the help that I need. I am now going to be released to a new pm doctor that I don't even know. I am really scared and sad about that. I have been with my current one for over a year :( .

    I think that you have a lot to offer. I think that it is great that you are given this opportunity to speak for yourself and others =D> .

    I hope to talk to you more!!!
  • Congrats and best wishes on the public service project... =D> jade
  • I haven't been able to catch up with the film and video instructor yet this week, as some family issues cropped up and I was out of town for a few days. I'm very excited about it, though, and WILL pursue it.

    Heidi, sometimes the fear takes over everything and we have to sit back and figure out if the pain will ever debilitate us as bad as we THINK it might. I know when I saw my doctor a couple of months ago, her question to me was "WHY are you so afraid?" I couldn't answer that, because I honestly didn't know. One of the things I learned at a residential pain clinic I attended last year was an acronym for FEAR; False Evidence Appearing Real. I try to remind myself of that sometimes, because we know that the more upset and stressed we get, the worse the pain.

    As for the nerve pain, I learned something from a man I met in Cuba. His mother suffers terribly from diabetic nerve pain, and she uses capsaicin cream and swears by it; it might be worth checking into at some point. I used something similar on an area of my back that has a lot of nerve pain, and it actually relieved it enough that it wasn't quite so annoying.

    That's all I have to offer for tonight, but good luck, and I'll keep you posted on how my debut as a movie star goes! (8)

    Tracy
  • IM GLAD YOU MADE A GOOD IMPRESSION FOR ALL US CHRONIC PAIN SUFFERERS. I DONT KNOW IF YOU READ ANY OF MY THREADS IM PRETTY NEW A FEW WEEKS HERE. ITS GREAT. WE SHOULD ALL COME TOGETHER AND GET SOMETHING ON A NEWS COVERAGE OR MAGAZINE ARTICLE, IF YOU READ MY FIRST FEW POST YOU WOULD SEE WHY. DOCTORS ARE GETTING TO STRICT AND PEOPLE DONT UNDERSTAND THE PAIN WE OUR IN I HAVE A SMALL CHILD AND HE IS 35 POUNDS AND TERRIBLE TWOS AND BACK PAIN DONT MIX TEMPER TANTRUMS ETC. LOL. THE DEA AND DOCTORS NEED TO UNDERSTAND BECAUSE OF BAD DRUG ADDICTS AND DOCTOR SHOPPERS ETC. THEY SHOULD NEVER DISCRIMAINATE A TRUE CHRONIC PAIN PATIENT. AND THE WAY PEOPLE LOOK AT US IN DRUG STORES ALL THE MEDICINE WHO'S THE DOCTOR WHATS WRONG WITH YOU? IM SICK OF BEING LOOKED AT LIKE OH LEARN TO DEAL WITH YOUR PAIN.. EASIER SAID THEN DONE,,, WELL IM GLAD YOU CHANGED THE OUTLOOK FOR A NEW SET OF CAREGIVERS AND GAVE THEM A REAL DEAL CHRONIC PAIN SUFFERER SPEACH. I WISH WE ALL COULD MAKE PEOPLE UNDERSTAND OUR CONDITIONS. DID ANYONE VIDEO TAPE YOUR PRESENTATION?? IT WOULD BE GREAT TO WATCH AND HEAR YOUR SPEECH AND THE REACTIONS IN THE AUDIENCE. GREAT JOB AND IM GLAD IT MADE YOUR WEEK.
    SINCERELY,
    DAWN
  • I had an ER doctor approach me the other day and ask if I would speak to the local doctors....I told her I'd JUMP (well, kinda....) at the chance.

    There's far too much negative crap out there about people being "addicted" to pain drugs; there are always the exceptions, but when people are in pain 24/7, they need something to get them through life until the next option comes along.

    Take care, and keep advocating for yourself; that's all we have.

    Tracy
  • by this thread and have tears of joy in my eyes as I type.

    You simply have to move forward to help influence the public and in doing so you will have turned your own struggle into something truely valuale.

    Good Luck and keep going. >:D<


  • I just came across this thread. Wow, what a wonderful opportunity for you, and you are the perfect person to do it. I too have always been impressed with your attitude and level of compassion here on the forums.

    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Im fairly new here and after reading this thread, feel a whole lot inspired.
    Go for it! At last someone is educating people on pain and all its implications. That although we look ok on the outside we can be crying in the inside.

    Thanks for a great and wonderful thread.
    Sue x
  • TracyLynne,
    I just wanted to say YOU ROCK!!!! I have read many of your posts and you are truly an amazing person. I would love to be able to do what you are doing. I have learned so much through my chronic pain experience and I have made the choice to keep a positive attitude about it, as much as humanly possible that is, I have my moments when I need to have my tantrums :''( I honestly don't know what I would do without this site and amazing people like you. Thank you for all that you do, keep up the good work!!!!
  • I had a call from our local college again last week, and have been asked to do a second presentation to a nursing class.

    Apparently the thing that hit home with most of them was the fact that I went through SO much to try and deal with the pain BEFORE attending the Emergency Room....so that's what I really need to focus on this time.

    I have to say I'm pretty excited. If only I could do this presentation for some of the doctors and specialists who have "attitudes".... :wink:" alt=":wink:" height="20" /> Not that they would necessarily care to listen!

    Tracy
  • It is great that you can share this information with nurses. It would be great if some of the Dr's out there got the message as well. Just because you look good, does not mean you feel good. Nobody knows unless they have walked in your shoes. God Bless!
  • Thank you for standing up and telling our story. We need more of this. The fall after I was put on meds, there was a negative,-5 part story about chronic pain and meds. If finalized with the interviewed people winding up in court, charged with stealing money and meds. I was really busted up over that, my Dr was giving me the third degree, like he was the author othe news-paper article.

    I am so happy that the REAL story of our journey is getting out there! ROCK-ON!

    David
  • Tracy,

    Is your video something that might be available electronically? I know some folks that be interested and also benefit from something like that. I applaud you for stepping up and being a spokesperson for those of us who have chronic pain and, like one of the students' relatives, don't share very much.

    Jay
  • I am figuratively jumping up and down and doing cartwheels for you. You go girl! I am so proud of you and grateful that you are helping us and others along with bringing more awareness of our chronic pain plight. Here's a gentle pat on the back =D> Take care and keep up the good work.
  • What a terrific story!! I hope that your presentation this year, goes even better than last!! Thank you for being our advocate, and getting our stories out there, and helping others to understand, especially those that have such an impact on our healthcare and lives and well-being!!
    Kelly
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Let me know when the dvd is ready, I'll by one!
    Make sure you have short clips for YouTube!!!
  • So happy for you Tracy, couldnt think of a better person....you go girl lol!!!
  • Way to go, again!!!!!! You have an amazing history and if you can help a few doctors or nurses understand chronic pain sufferers, I say keep it up! We should all take inspiration from you and have our story told, if it would help.

    Keep in touch. I've missed hearing from you.

    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I decided to pop by and revisit some of my old posts....I was so surprised to see this thread had continued, and I'm sorry I haven't responded before now.

    My presentation in October was FANTASTIC. That is the only word that comes to mind when I think back to it. I had a long time student come up to me afterwards to say that in ALL his years of schooling (he had been through two diploma programs and is now going for his nursing degree), he had never seen a guest speaker who had such an impact on the class. I was speechless, but very excited at the same time. Who would have thought that I could ever get up in front of a classroom and share such personal experiences with a bunch of strangers??

    The questions that came out of the presentation were thoughtful and very specific; many of the nurses wanted to know how they, personally, could make the chronic pain experience a better one for those of us who suffer, and my answer to that was listen, listen, listen, do not judge, and be compassionate.

    I was surprised when I became extremely emotional and tearful at one point while speaking about my youngest son's graduation from high school. I was on a Fentanyl patch at the time, which made me kind of "loopy", and still left me in a huge amount of pain. When it came time for the Mom and son/Dad and daughter dance, I was terrified; I had been sitting too long, I knew I'd have trouble standing, never mind walking down the bleachers, and that it when something amazing happened. Several people who were sitting in front of me stood up to help me down. My husband stood up first, and got me going. From there, I was given a hand, step by step, as I made my way to the dance floor in tears. My son assumed the tears were because he was graduating...they were, in fact, tears of fear, and then relief, for having the ability to do the dance.

    When I finished speaking to the nursing students, there was not a dry eye in the class. Mission accomplished - they were all caring and compassionate human beings, and I believe I made a difference in what they would become.

    There have been so many bumps in the road that I tend to get preoccupied and forget that I really do want to do some kind of video presentation. When that does happen, I will be sure to let you know.

    In the meantime, thank you all SO much for your support. Believe me when I say that I do these talks to speak for ALL of us who deal with the never ending saga of chronic pain.

    Take care, and be good to yourselves.

    Tracy
  • I decided to pop by and revisit some of my old posts....I was so surprised to see this thread had continued, and I'm sorry I haven't responded before now.

    My presentation in October was FANTASTIC. That is the only word that comes to mind when I think back to it. I had a long time student come up to me afterwards to say that in ALL his years of schooling (he had been through two diploma programs and is now going for his nursing degree), he had never seen a guest speaker who had such an impact on the class. I was speechless, but very excited at the same time. Who would have thought that I could ever get up in front of a classroom and share such personal experiences with a bunch of strangers??

    The questions that came out of the presentation were thoughtful and very specific; many of the nurses wanted to know how they, personally, could make the chronic pain experience a better one for those of us who suffer, and my answer to that was listen, listen, listen, do not judge, and be compassionate.

    I was surprised when I became extremely emotional and tearful at one point while speaking about my youngest son's graduation from high school. I was on a Fentanyl patch at the time, which made me kind of "loopy", and still left me in a huge amount of pain. When it came time for the Mom and son/Dad and daughter dance, I was terrified; I had been sitting too long, I knew I'd have trouble standing, never mind walking down the bleachers, and that it when something amazing happened. Several people who were sitting in front of me stood up to help me down. My husband stood up first, and got me going. From there, I was given a hand, step by step, as I made my way to the dance floor in tears. My son assumed the tears were because he was graduating...they were, in fact, tears of fear, and then relief, for having the ability to do the dance.

    When I finished speaking to the nursing students, there was not a dry eye in the class. Mission accomplished - they were all caring and compassionate human beings, and I believe I made a difference in what they would become.

    There have been so many bumps in the road that I tend to get preoccupied and forget that I really do want to do some kind of video presentation. When that does happen, I will be sure to let you know.

    In the meantime, thank you all SO much for your support. Believe me when I say that I do these talks to speak for ALL of us who deal with the never ending saga of chronic pain.

    Take care, and be good to yourselves.

    Tracy
  • Well, I have been approached, yet again, to do a presentation for second year nursing students sometime in early October. While some of my content is absolutely necessary, I like to change it up a bit each time to add new thoughts and/or quotes, and also to ensure that I don't bore the instructor to death!!

    This year I would like to ask for input from some of the SH members who have long-standing chronic pain issues. My question to you is:- If you could give an up and coming nurse ONE small piece of advice when it comes to dealing with patients who suffer from chronic pain, what would it be? (An example might be "Don't assume we are all drug-seeking.")

    I would like your response to be as brief as possible; I am only given a one hour time slot, so I try to fit as much as possible into that hour.

    Thank you to everyone who might be willing to participate. If you would rather not post under this topic, please feel free to PM me.

    Tracy
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