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My Debut as a Chronic Pain Spokesperson

TracyLynneTTracyLynne Posts: 599
edited 06/11/2012 - 7:24 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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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"
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  • Wonderful.
  • What a wonderful opportunity =D>
  • dilaurodilauro ConnecticutPosts: 11,348
    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 Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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  • 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!!!
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