hello friends- my new project

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_Christina
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Date Joined Feb 2007
Total Posts : 553
   Posted 5/18/2012 1:58 PM (GMT -6)   
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.
_christina
"Life seems a little easier when you remember to breathe"

Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
Fibromialgia 2010
Gluten senitivity 2010
Sleep apneia 2007

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/18/2012 3:52 PM (GMT -6)   
Hi Christina....

Good to hear from you. Sounds like life has been pretty busy..... I also can hear your excitement about your new project! That's awesome. God put it on my heart years ago to write a book as well -- and it's one of my goals at a different season of life. So - I'm excited for you and this new journey.

Wishing you all the best! --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 5/18/2012 6:54 PM (GMT -6)   
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.
_christina
"Life seems a little easier when you remember to breathe"

Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
Fibromialgia 2010
Gluten senitivity 2010
Sleep apneia 2007

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 5/18/2012 7:20 PM (GMT -6)   
Hi Christina Welcome back to the forum, it has been awhile since I have seen you post! I think writing a book is an excellent thing to do, and I wish you all the success in world! Tina I see you also have sleep apnea, how has your chronic pain affected your sleep? And your sleep apnea? I don't know what affects if any it has had for you, but I also have sleep apnea, and the chronic pain has really had a great affect. For one thing the pain meds can cause central apneas, and then the other is constantly waking up during the night because of the pain and having to readjust my bed or position so I can get back to sleep. Lack of sleep also can affect your pain! Anyway I wish you all the best on this book, sounds like a winning subject to me!

White Beeard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/18/2012 8:06 PM (GMT -6)   
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!

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/18/2012 9:52 PM (GMT -6)   
Christina,

I think it is very exciting that you are deciding to write a book. Good luck with that! I think it could be very helpful for the chronic pain community.

I'm sorry about the added stress you have been under. This is where I can totally relate. I have posted on this forum about my fibro flare and how it has been partially caused by my recently added stress as well. Lucky for me, things are starting to look up and I am starting to feel a bit better, myself.

I wish you success with your endeavor. God bless.

Lindaloo
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 5/19/2012 12:20 PM (GMT -6)   
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?
_christina
"Life seems a little easier when you remember to breathe"

Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
Fibromialgia 2010
Gluten senitivity 2010
Sleep apneia 2007

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 5/19/2012 12:30 PM (GMT -6)   
By the way, I'm posting on my phone. As I re-read I'm finding a lot of "auto correct" mistakes. Sorry if it reads weird. :)

_christina
_christina
"Life seems a little easier when you remember to breathe"

Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
Fibromialgia 2010
Gluten senitivity 2010
Sleep apneia 2007

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 5/20/2012 10:53 AM (GMT -6)   
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.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg & 2-3x 10mg Hydrocodone daily. Oxycodone 10mg for BT. .25-.5mg xanax as needed for sleep, Verapamil 240mg SR (for tachycardia).

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 5/22/2012 10:21 PM (GMT -6)   
I am going about this book more along the lines of peer-to-peer rather than as an expert. An explication of the concept of pain in the medical sense would be beyond what I want to explore.
There are other books out there that explain this quite well. (Understanding Pain, what it is, why it happens, how its managed- Harry Gould lll md, phd) (Me and my pain, Abby Strauss, msw, md)
I have seen several books written by drs, even books written by drs in pain, but never by anyone who did not care to call themselves an expert for any reason other than living it.
The chapter on the emotional damage of a relapse is what caused me to think of writing. I could not find one out there. The cost of my relapse in the late fall shook me hard. With an RA relapse that caused me more pain, i had a hard time with my bipolar all over again. I wanted a book to read on the emotional aspect of going BACK INTO pain, not what you feel in the begining or in the middle. I had 3 drs and 2 librarians and myself looking and I did not find one. So, I write one, I suppose.
_christina
"Life seems a little easier when you remember to breathe"

Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
Fibromialgia 2010
Gluten senitivity 2010
Sleep apneia 2007

canzing
New Member


Date Joined May 2012
Total Posts : 13
   Posted 5/22/2012 11:35 PM (GMT -6)   
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."

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 5/23/2012 1:40 AM (GMT -6)   
I think taking the "peer" approach is a really good idea. I think a lot more people would be more likely to read and take the info to heart.

Also, if you want my more personal info to ask me any questions or anything else, just let me know and I can send you an email!

badreflux
Regular Member


Date Joined Aug 2010
Total Posts : 74
   Posted 5/23/2012 8:09 AM (GMT -6)   
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
Regular Member


Date Joined Apr 2012
Total Posts : 114
   Posted 5/24/2012 1:04 AM (GMT -6)   
I think this idea is great I have thought of it many times myself!! I thought I would put a ad on craiglist or something because most people with chronic pain want to be heard so everyone who does not have it stops judging people who do. So if I were you I would try to interview as many people as you can and then possibly pick 5 to 10 besides yourself you follow in the book! Great idea!

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 5/24/2012 9:06 AM (GMT -6)   
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.
_christina
bpc_Christina@Yahoo.com

"Life seems a little easier when you remember to breathe"

Dx: Rheumatoid Arthritis 2008
Bipolar 2 2006 (symptoms since 1993)
Fibromialgia 2010
Gluten senitivity 2010
Sleep apneia 2007
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