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"

Wonderful.

What a wonderful opportunity

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

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!!"

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!!

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 .

I hope to talk to you more!!!

Congrats and best wishes on the public service project... 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!

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.

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

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

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".... 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 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!!

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

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

Tracy,

This is an awesome thread. I wish that I saw it sooner. My daughter has been fighting RSD for over three years and I've been fighting chronic back pain for the same timeframe.

In response to your question, on behalf of my daughter Erin and myself, I would like the nursing staff to continue to do what they have done for us on a couple of occassions already -- be our advocates for effective pain relief when dealing with doctors. Nurses are in the best position to monitor pain levels and ensure proper pain relief. For example, when I was in the hospital after my lumbar fusion, I had a nurse who called the resident at 2AM because she knew that my pain was out of control and that I needed more help. She took some serious grief for waking him up, but she took it in stride in order to help me. I can't think of a better example of personal and professional strength of character, good judgment, and compassion.

So much for brevity. Sorry about the long post.

Best wishes.
Dave

You are the patient Advocate. Think of every patient as being your Mother, sister, Grandmother, brother or even your own self and how you would like to see them cared for and speak up for them when you see them in pain.

I also sent a PM. Good luck. Charry

Can you perhaps include fathers and grandfathers in that as well?

I don't mean to suggest that Charry left them out intentionally. I know better! It's just that I happen to be a father of five and I have a father (their grandfather) with terminal lung cancer. So far, his battle has been confined to his lungs and he is pain-free. That won't be the case for too much longer as the cancer spreads.

Thanks,
Dave

I would definitely make it "gender neutral" so it could apply to ANY family member!

Yes sorry of course I meant Father and Grandfather as well as brother and Uncle or Aunt or Niece or Nephew or good friend. One of the reasons why I went into Nursing was because as a teenager I lived with my Grandparents and my Grandma had MS and I had to help her so really I mean all who are your relatives should be remembered while caring for someone.

I hope your Grandfather gets the right care while at the hospital. Prayers for him also. Charry

Tracy I applaud what you are doing. This thread started before my car accident which made me stop and think...I was living a "normal" life back then. Oh how fast life can change.

The only thing I could suggest would be telling those doctors and nurses to look the patient in the eye when talking. I get so frustrated when I go to an appt and as I am talking they are writing. I feel like they have already tuned me out and that they are missing most of what I am saying.

I know time is precious but this behavior is just plain rude. It also will lead to errors. Ever try writing and listening at the same time?

Perhaps ask them to keep in mind that no one ever asked for chronic pain. That going to the ER (or being in the hospital for pain issues) is probably on the list of the last place they want to be; the last thing they want to do.

I have to admit, I wish your presentation was to doctors as well... for the most part, the nurses have been some of the most compasionate, caring medical professionals I've had dealings with...
some of the doctors on the other hand...especially those in the ER...leave an awful lot to be desired.

Thank you for being willing and able to get out there and make a difference!

I just visited my family out in Minnesota. At that point it hit me just how depressed I am about my situation and my lack of ability to do much of anything. They managed to cheer me up, and then I came home. Now I'm backing to feeling beaten down again and with no single doctor who is on my side.

I don't think my situation is even as bad as yours, Brenda, but I have been fighting my own battle for three years now on top of seeing how RSD has ravaged my little girl since the age of 12. She is now almost sixteen. I just started crying as I'm writing this, and I have to get on a conference call at work at this very moment.

I guess I'm in the group that needs Counseling.

Take Care,
Dave

Brenda,

You are a sweetheart. It wasn't you who made me cry. It was the recollection of some of my daughter's most horrific moments of pain.

I like the way you described the two beasts. Somehow that frames it in a way that it's something that I/we can confront and fight, rather than something inside of us that we have no control over.

I wanted to reiterate my support of the psychological aspects of pain management. My daughter sees a psychologist on a regular basis and she is effectively coping with pain that is probably an order of magnitude greater than mine, and with virtually no pain medicine. I think the counseling helped her resiliency. I actually look to her for guidance regarding my own challenges. Again, she is not quite sixteen yet, but she has been forced to grow up quickly as a result of RSD, and she has developed a genuine wisdom on the topic and she actually helps support other children with RSD.

So, tying this back to Tracy's post, I don't know exactly how nurses can intervene to ensure that the psychological aspects of pain are addressed, but it seems to be a worthy topic if it isn't already being addressed.

Thanks,
Dave

I am finishing up my presentation to the nursing students, so this is the last chance for anyone to contribute.

In short, if you could give an up and coming nurse ONE small piece of advice when it comes to dealing with those of us who suffer from chronic pain, what would it be? Please make your response 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.

Thanks again to everyone who provided input.

Tracy