Posted 5/19/2012 10:20 AM (GMT -7)
Thank you for l your support.
WB- That pain effects the apnia as we'll as the other way around. I also have the added bonus of Bipolar affecting my sleep, sometimes making it very hard to sleep,and/or if the pain/apnia reduced sleep it can make my bipolar haywire. I have a cpap that I use religiouslyand my psy gave me sleep meds to use every night. One dr who isn't afraid of getting hooked on them because it is more important that I actually sleep. She even allows me to go up on the dosage, and take it with my pain meds. I got lucky That way.
LexiRae- I am more focusing on sudden onset pain conditions, particularly those who have comorbid conditions and have to see more than one type of dr. I am aiming for that point where I got totally overwhelmed about six months in, hadn't learned any good coping skills yet, was still in awe of the drs, and stumbleing along.
The advice from a person who has grown up dealing with every day pain would be welcomed. I have a chapter called "Pain is pain is pain" that is about the fact that regardless of the cause of the pain, when chronic pain invades your life, other people in pain will understand when others might not. I want to go over some pain conditions that the average person might not know about. That is a good chapter for you to contribute if you want to. Another good place would be coping skills that would work across the board for chronic pain.
I've always wanted to write a book, and have started several works of fiction, but never got past the 5th or 6th chapter. I would just loose the storyline in my head. Writing nonfiction is so much easier for me. I've had several newsletter-type nonfiction works published (13 to be exact) when I was working, but this would be my first book-length work.
The chapters I have are:
-explination of the term, my story, why I wrote the book
*Overwhelmed and out of control
-the grieving process for you loss of health, for the loss of future plans,being unable to control the body/thoughts/emotional and the terror that can bring
*On the outside looking in
- What this feels like for those near you. The waitress who serves you each week for 2 years after each drs appt. Spouses, parents, nurses. Their thoughts and fears and coping skills.
*The emotional told of an unexpected relapse.
-this is the topic that caused me to write the book. As far as I can find, there is not a book for this. Relearning coping skills, greaveing plane all over again.
*The vital importance of having a great team of drs that you trust.
-They are on your team, not you on their team. It IS a team. Building a team rather than a 'jack of all trades'.
*Dealing with doctors in general.
-This is where funny/terrible things design say belongs. Drs are human beings too, and although they have a lot of knowledge, they make mistakes too. Don't be afraid to fire your dr.
*Being a good PT
-Shower. Don't yell. Don't be rude. Don't "no-show". Don't lie. Etc.
*"Fibro fog" or "Medication Daze"? Working out the difference between a symptom and a side effect.
*Pain is pain is pain
*Reaching out to others
- support groups, don't wear the I'm OK mask all the time, there is a time and a place to hold it all in but you don't have to fake wonderful, find people to be with who don't focus on your conditions
*Meeting expectations while in pain/sick
- Parent, work, friendship. This is a big part when I'll need help because I'm personally terrible at this, plus I don't work. I welcome input.
*"Circle" of controlability (setting priorities)
- you just cant DO everything anymore.
*Maintaining "Balance "
- learning to read yourself, your symptoms, side effects, traits and triggers without letting it overwelm you and control your life, making it all worse.
-lots of them
*Being a "professional" patient
-Stigma of being disabled, disclose or not, waiting room stories, insurance tips, apply for disability or not......
So, what do you think? If you want to contribute ideas, or your own reflections, I'm including personal testimonies as well. It's basically what we do here- answer questions, give support (a lifeline sometimes), teach, but in book form.
Would you read it?
"Life seems a little easier when you remember to breathe"
Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
Gluten senitivity 2010
Sleep apneia 2007