pain poem (from 9/10/2010)

I found this old poem in an old journal the other day.... It describes how it feels when my fibro flares and seem to take over me.... engulfed by pain, the fibro tries to claim ALL OF ME....

All of me
filled with piercing pain
the ever constant pounding
from my always predictable "friend"

Chronic Pain
friend or foe
everlasting
always and forever there

The sky seems dark
my Spirit bleak
I feel trapped
between two worlds

One, a world of isolation
of hurt, agony, and pain
A pain that will never leave me
always and forever there

The other world
I tip toe on the fringes of
never quite belonging
from the outside looking in

I will never be alone
for each road I travel
my constant companion is always with me
My "friend", my "enemy", my "companion"

Apart..... separate... an outcast
MY LIFE
'til death do us part
me and my pain
will remain as one

But when my sweet forever comes
and Jesus takes me home
Then I will be
Forever.... truly free! <3

spring is right around the corner

I can't wait for spring, It has been so hard this winter.... I knew I had bursitis in my hips, but I had forgotten how bad the shots hurt and how long it took to get well also.... I have to do baby stretches as the muscles that are bothering me, are too short, hence, the bursa... but I also know, I am feeling better in other ways and know that even though it will take time, I just have to ride it out... winter's been hard, but spring is right around the corner, and the days are getting longer, and I will get better!! NEVER GIVE UP!!

To my support group on facebook: I just wanted to pop in and say hi and hope everyone is having a pain managed day.... Spring is just around the corner, it's been hard on a lot of us lately, and I want you to know, I am so blessed with this group and pray for you guys.... Knowing I'm not alone is so helpful.... The holidays are over, and we can take a deep breath! Can't wait for spring, but know that even though I may "feel" this way today, I know it won't be like this forever.... hang in there everyone!! ♥

10 Things to STOP Doing to Yourself With Fibromyalgia & Chronic Fatigue Syndrome

*This is not my article, copied to share along with other fibro warriors!!  from the url:  http://chronicfatigue.about.com/b/2012/01/10/10-things-to-stop-doing-to-yourself-with-fibromyalgia-chronic-fatigue-syndrome.htm

When you have a chronic illness like fibromyalgia and chronic fatigue syndrome, you've got enough working against you - you don't need to make things worse for yourself!

It's hard not to, because by society's definition, something (other than illness) is "wrong" with anyone who isn't go, go, go, full speed ahead, all the time. We're expected to work long hours at stressful jobs, be amazing parents, have a perfectly clean house and keep up with the Joneses. If you can't, you must be horribly flawed!

Getting out of that mindset is difficult, but it's something that can really benefit us and help us improve. It takes work, though.

The first step is recognizing the things you do in pursuit of this idealized picture of who you're "supposed" to be. Here are 10 damaging things to watch out for:

1. Overdoing it. Pacing is essential for us - we'll only get worse if we do more than our bodies can handle.
2. Criticizing yourself. You know better than anyone else that you really are sick, so give yourself a break already! When you catch yourself, try replacing the critical message with something like, "I'm doing the best I can and that's all I can do." (It sounds corny, but it works.)
3. Blaming yourself. It's not like you asked for a chronic, debilitating illness to come along and knock you right out of your life. No matter what some people may say, your illness is not your fault!
4. Believing other peoples' negative opinions. It's always going to hurt when someone says you're "lazy" or "crazy" or "worthless," but you can't afford to believe them. Someone who keeps going, the best they can, through adversity is stronger and more capable than most. That's what you need to remember.
5. Having unrealistic positive expectations. We tend to put all of our hope and faith in whatever treatment we're trying, and all that does is set us up for a major disappointment when we're not suddenly cured. Approach treatments with the attitude that any improvement is a success, and remember that we generally need to use multiple treatments to truly make progress.
6. Having unrealistic negative expectations. On the flip side of the coin, trying treatment after treatment without success can make you feel like nothing's going to help at all, ever. That can prevent you from trying new treatments that might work, and it can also cause a reverse-placebo effect - it won't work because you expect it not to.
7. Putting yourself last. A lot of us are willing to put all our energy into the people around us, our jobs, our responsibilities ... only to have nothing left for ourselves. It doesn't work. If you don't take care of yourself first, you'll have less and less to give until there's nothing left - because you'll keep getting sicker. Taking care of yourself is survival, not selfishness.
8. Giving up too soon. When you try a new treatment or lifestyle change, it can take time for the effect to be felt. If you give up too soon, you can really miss out on long-term benefits. Give your body time to adjust to the change.
9. Letting stress overwhelm your life. Our lives are full of stressors, and being sick only adds to them. The problem is, stress just makes our symptoms worse. Find ways to reduce or manage your stress so it doesn't keep driving you into the ground.
10. Asking why. We all want to know why we're sick. Is it genetics? Your diet? Vaccines? Pesticides? Infection? Some sort of punishment? Why did it strike you and not the millions of other people like you? This line of questioning can lead to a downward spiral of self-blame, guilt feelings and increased stress. Instead of "why," we need to ask, "what's going on in my body?" That's the question that can uncover the causes ofsymptom clusters and lead to treatments.

i hate the cold!

I hate hate hate the cold!!!! It makes my fibro flare and my headaches act up! It sucks and I am looking forward to warmer days!!! these cold days make my body hurt! :(

holidays and living with fibro

So my main doc is leaving on maternity leave... I was pretty scared at first, but saw her for the last time and we put everything in my notes, I am seeing a neurologist monthly now-human pin cushion, but it's working, slowly but surely, and even if I don't ever "completely recover", I will be able to get to MY best!! I am making peace with my health and keeping stresses at bay (as much as anyone can) and even doing some therapy for personal issues.... Oh, and in the town I live, they are going to be offering a 6 week class on living with chronic illnesses in January or February, put my name and # on that list, I would LOVE to take some classes learning to live with and deal with my fibro/health specifically! So very hopeful on that end.... I am having a pretty good fibro day, and gonna finish my Christmas shopping today, got my cards done last night, first time since 2006, and it feels really good!!! My babies are growing up and I am so proud of them, and I got some picture packages and mailed the pics with the cards, family will enjoy that!! The one thing though, I am exhausted.... I could sleep for a few day, thank goodness for coffee and the weekend!!! Can't believe it's almost Christmas, and I can't believe how ready I actually am... the rest the house, laundry, dishes, piles of this and that, well, that's why I have the two most wonderful girls, to help with cleaning!!! I know they love it, all sarcasm intended!!! Gotta get ready for the day, thanks for reading and wishing you the best health possible!!!

for family and friends of those with fibromyalgia

Because fibromyalgia is a chronic condition, people often forget or tend to forget, ignore, or gloss over the fact that the afflicted are indeed ill. Sometimes a little extra support and understanding is in order, and it doesn't take much to show a friend with fibro that you care, you are thinking of them, and you are taking their syndrome into consideration.
Here is a list of things you can do to show your friend with fibromyalgia, or any chronically ill friend, that you care:
Ask her to explain to you what it is like to have her condition. What is most frustrating? How does she deal with the bad days? How has it changed her outlook on life and day-to-day activities? Listen to the answers and try to understand her point of view. Ask for clarification.
If you know she is flaring or depressed, or just because, send her a get-wll card of gift. It doesn't have to be anything big, just something to show that you are thinking of her and wish her well. However, don't put stress on the "get well" part because she won't. Instead stress the "feel better" aspect of the message.
She may be unwilling to ask for help, but chances are she would appreciate it. Avoid asking what you can do and instead think of something you know would help her out and ask if it's ok for you to do it.
Recognize that chronic pain and fatigue can make anyone irritable at times, and if she seems irritable, it's nothing personal.
Be flexible when making plans and don't make her feel guilty if she cannot do something or must reschedule a date due to her condition.
If you visit, be an easygoing guest. Don't expect to be entertained and be prepared to do things for her if wanted. If you expect too much, this will only give her unneeded stress. Your company in just sitting quietly and reading a book is appreciated.
Ask if you can run an errand for her before visiting. 
Don't assume she can't do something without asking first.
Keep her diability in mind when making plans and make sure that venues or situations you choose will be accessible and friendly to her condition.
Drop prepared food or homemade food in Tupperware containers at her house. But make sure you know what she can and cannot eat beforehand since people with fibro often have strict diets.
Invite her to a spontaneous event. Although it may seem like she can't go anywhere without a lot of planning, if you catch her on a good day she will know right away if she can go.
Let her know that she can talk to you and you will listen. And actually listen, and just listen. Chronically ill people often have a lot they want to get off their chest but they feel they will burden others with their concerns and frustrations.
Be a shoulder for her to cry on and no matter how trivial something may see to you, it is a big deal for her.
Do some research of your own into her condition to better understand her symptoms and treatments. If you find anything that may help her let her know in an no-pressure way.
Be her advocate. If you are at an event and there is an issue because of her disability, speak up!
Don't mineralize or trivialize her symptoms, and don't pretend or think that you know or understand exactly what she is going through.
Remember the carers. These are people who may devote a lot of time or energy caring for a loved one with a chronic illness. These people could use a little extra emotional support too, even if it's just asking "how are you?" or offering to take over their care duties for a couple hours.
POSTED BY LAURA LAVOIE WESTOVER   (I did not write this, it was on facebook, but it is a GREAT little article to share with those close to you)

neck needs healed

I finally got into a specialist for my neck..... last Thursday, he was awesome, and kind, and knew what he was talking about it and really listened to me and seemed to genuinely care.... it has been years and I would like relief on this left neck shoulder area, it is very difficult and keeps me from way too much!!!! anyway, my doctor said for me to stay off the computer more cuz of the way you have to turn, keep you head, and how it pulls on my neck..... I am focusing on doing my exercises daily, keeping well, and getting better..... but it also means less computer and facebook and.... thank goodness for good old fashioned books, lol! Will be on when I tho and will continue to post, just might not be daily..... Til next time!