Only For Awareness… In September

Through the month of September is a very personal thing happening. The month is dedicated every year to help bring awareness to a very much mis-understood disease, Chronic Pain (C/P). Chronic Pain has finally been inducted by the American Medical Association as a disease, with its own diagnostic code even though it encompasses multiple over-lapping conditions and diseases. Yet this has changed little for the person living it.

As a woman and an advocate who has lived with C/P for almost 29 years I have seen little to no improvements in treatment modalities or the culture. This goes straight up the line to the actual very people who are supposed to help us. The physicians. I have been met with indifference,, rudeness, discrimination, and out right cruelty over the years.  And yet the very nature of this disease requires that we endure these kinds of attitudes & treatments or we risk losing all treatments. Sometimes even this will feel like an option. Sadly.

For over 15 years now I have participated in advocating for what I live, and I will continue to, yet somehow I have expected more bang for my buck. I will keep Hope, Dream &  keep possibilities open for yet another year.

Tracy at ohwhatapain at a woman who lives much of her life, as I do. as do the millions of others who try desperately to thrive despite C/P.  Tracy is also a passionate advocate bringing awareness about this chronic illness, and this month she has a special project. I am participating because I believe in Tracy, but more important to both Tracy & I is that we both believe in the importance of this awareness.

I ask that you join us in our quest. Please visit Tracy’s blog. Even if you are not directly involved chances are there is someone in your life that is.

From Tracy’s Blog this month and all month-long.

Please answer the following questions:

  • 1, What condition(s) do you have that have led you to living with chronic pain?

Starting out with what I believe was the catalyst for all. TMJ, Migraines, TMJ Implants & the ensuing nightmare, Giant Cell Response ( poisoned by the implant materials the body sets up rejection) Connective Tissue Disease, Fibromyalgia, Cervical and Thoracic Disease.

  • 2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )

That it is the one other chronic illness that like HIV is met with discrimination based on inaccurate assumptions from people who have no clue. From the perception that because I am someone who lives her life 24/7 in pain I must be lying, faking, lazy, a drug-seeker, mentally ill, just to name a few. If I should be enjoying my life despite being in pain only because I have been doing this so long I have created coping skills, I must be better, lying, faking, lazy, drug – seeking, mentally ill, or all of the above. What other chronic illness envelopes these assumptions?

  • 3. Which philosophy do you ascribe to:  Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

Both. In order to keep functioning I need to reconcile and accept that this is my fate. I will need coping skills to make it through my life while navigating this world while in pain. I also have to hope for a better future. I’d give up if not.

  • 4. What do you miss the most that you feel you gave up because of chronic pain?  What do you do now to fill that void?

Without a doubt singing on a performance level.  I’ve not been doing enough to make certain my life is surrounded by music in alternative ways. It’s taken me this many years though to figure out such a simple answer.

  • 5. What have you heard from others that made you feel better? 

That others who care just want to try to understand. not just have their eyes gloss over even though they asked. I understand it’s boring, affects their life too. I’d like the same understanding.

  • 6. Do you feel that people view/treat you differently? How?

As I have said above in question #2. (sorry Tracy being lazy. not wanting to retype it   😉

  • 7. What coping mechanisms have you tried that worked for you?  Which ones did not work for you? (Traditional and Non-traditional)

Being creative with my hands somehow lets me pull away from my own nose and see that through immersion into a passion is a great skill. It took me some years to learn to allow myself this time when I want it but also when I need it. Today I can fill my stereo up with music, turn up the volume and paint, collage, create greeting cards, memory albums, and quote books………and on.

Also I want to give a nod to getting out side your own problems, visit with someone who is struggling with their own trials and tribulations. Perspective is a wonderful coping skill.

Thank you Tracy!

11 thoughts on “Only For Awareness… In September

    • Thank you so much Jules. Coming from you this means so much. You know pain. It’s all the same.
      You know because I have said it before, and I know that you don’t like me sayng it so I usually do not.
      But, today Jules I’m saying it, that you are my hero!

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  3. i added your responses, but I put it under your blog address…wasnt sure if you wanted your name/age listed 🙂 message me if you want me to change it! Thanks for helping!

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