hello friends- my new project

Hello everyone I know and all those i dont know yet. Ive been missing for a while- and Im sorry. Ive been dealing with my daughter being dx with ADHD midway through 8th grade, a vacation trip from Illinois to Florida, my grandfathers death, a flair-up due to becoming tolerant to one of my medications, side effects to the new one, and if thats not enough stress- my husband decided to switch jobs. (Which includes insurance, billing, pharmacy type and all).

Part of my journey is that i have decided to write a book.

It is on dealing with chronic pain and illiness and what all comes with it. The way that the symptoms from one dx mix with the other. How each time you adjust something with one dx, everything else changes.

Its on the feeling of being out of control when you cant control what your mind/body is doing inside you.

It will have a part on the effect on those arround a person with chronic pain/illiness
Its about dealing with doctors, expecially multiple drs and some stories on how great/silly/awful they can be.

A big part of the end will be on coping skills and maintaining balance.

I'm going to use what i have learned here, throuh my experences, and what i have heard and read. My email is available if you want to talk, or help me.

Mostly i wanted to thank you all for supporting me and teaching me to the point where i feel like i can help others.

I love being able to share my stories, and share in other's stories here- but what if i didnt know to look? If all i found was info on the Dx, but no personal stories to draw from? If i knew a lot of lists of what NOT to do, but no idea what TO do to? Thats some of the things i want to help with.

Are you focusing on chronic pain caused by certain disorders? or just chronic pain in general? I've found that the approach to chronic pain often depends on what the cause of the pain is...and what phase of life the individual is in.

How will you address that? I've got Cerebral Palsy, and it's a condition I was born with, and there's no "cure" for it. So if you'd like to see things from that kind of perspective I'd be more than willing to share some of my experiences with you.

I think a book is a great idea. It's another way to reach out to those who might not realize they need the help until they see the title/open the book!

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:
*Spaghetti Diagnostics
-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
-described above.
*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.
*Coping skills
-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?

A book on CP sounds like a good idea. Have a look at the existing titles (Amazon lists "The Pain Survival Guide", "Living with Chronic Pain" etc.) and think about how your project can fill in something missing, or do a better job than what is out there.

Also, you'll probably need an agent (almost universally you do), so in time, that is something to explore.

Let me also suggest a chapter titled something like: "What is Pain?" It seems obvious, but it really isn't. Or maybe "Thinking about Pain". I keep on planning to read the "philosophy of pain" articles out there, but haven't gotten to them. One point to consider is pain vs. suffering -- as from my perspective, the latter is such a huge part of what CP is -- the anguish of always being in pain, vs. just the pain itself.

While I am new here - Congrats on taking the steps to writing your book & yes I would definitely read it!

I think many people need & gain a better outlook of coping/helping/dealing with problems from other people's stories. It's a better 'connection' so to speak; rather than getting info from Dr.'s who sometimes just chalk us up as "another patient."

I love the idea and the capters you haveplanned out...just reading thosexmakes me feel better about what I go through with my emotions so I can imagine the whole chapters would really help.mecope wth the feelings I go through in my mind and the lonleyness of always hurting ..its not like I have the energy for friends anyways but its a very lonesome life for me always being in pain :-( ...

Ryobi, what a great idea! To follow particular people through the different chapters to see how it deals in the total life. I was working on collecting snippets for each section that best fit the idea I want to present, but not a cohesive storyline to follow through the book. What a wonderful idea! Thank you.