Med changes

So hurting....... this pain is nearly unbearable...... the cdc our lovely government decided to make me choose between my mental medications and my physical needs. I had to choose my mental meds to keep. I know, I know, take it one day at a time , but how? How does a person live with such agonizing pain daily? What we wake up to, what we go to bed to.  This sucks!!

definition of pain

If words were enough to describe what it's like to live in chronic pain- I think suffering & torture would sum it up! :/

Website writing tips

https://m.facebook.com/WritingYourWayThroughIllnessOrDepression

Great website!

Losing my life

Ouch ouch ouch! I'm so tired of hurting.  So tired of pain.  Wish I could do what normal people do.  But instead, I bite my tongue, see all I lost and won't have again and take my meds and lay down for a while- losing precious time.  I hate Fibro and how debilitating it is to live, or rather not live!! :/

Fibro's Grip

Having fibro is not fun.... It plain outright SUCKS!!! I am one of those that tries to be politically correct, I think it's cuz we don't want others to see our pain either, feel like it's never ending and sometimes I feel like I just whine and complain, hard not to focus on it when the pain is so consuming!! So honestly, my first thought,, having fibro sucks!! BAD!!!! I am currently in a group about grieving and loss with a slant geared toward depression. I went to my first group and TISSUE PLEASE!!! I cried and cried and ohhh, it was VERY emotional, yet I feel I need to grieve the loss of who I was and working on acceptance of where I am and that fibro is not going anywhere, can be managed, but it will never go fully away! ARG!! I want want want to be well.... If I could will it away I would, and I've gone through that, and the fibro and it's pain is still here, in my body.... It sounds dramatic, but if you've ever seen or watched the X-men movies, when Wolverine gets injected with titanium and when he goes to extend his new claws, he can feel the excruciating pain as the titanium comes out of his skin.... My pain is the titanium and it is gut wrenching at times as the fibro's grip on my body, inside, from the top of my head to the tip of my toes... AND IT SUCKS SUCKS SUCKS!!!! Then there's the stigma that my house being more messy makes me lazy, or me sleeping in and needing a day of rest. People that have never dealt with or even had some type of chronic illness don't seem to understand. What comes so easy to the "regular world" is really hard for me! For anyone suffering and/or in pain, life is not the same. The world looks different, and it is different! I am tired and frustrated and tired of being sick and not feeling good. Tired of the pain. Tired of hurting! I know we all go through worse times than others, and right now, it has been an emotionally hard time facing the loss of who I was, the fact of who I am, and then where I'm at cuz of the fibro and my crummy health. I just started a group to help with the loss and it is hard, but I have to face it and deal with it so I can come to some sort of peace with it. One day at a time is all I can say lately....

Slow road to recovery

‎2012, a new year, another year, and one that I hope brings more healing,not just physically, but also emotionally as well.... I had a surgery go TERRIBLY wrong, internal bleeding led to infected hematoma.... several surgeries, a pic line of heavy duty iv anti-biotics, and weeks turned into months later, I have slowly been trying to reach my pre-surgery self... It was about 4 years ago in February that I got my pic line out, my doc said a normal person it would take a couple years to bounce back after all my body had been through, but with having fibro, it would take 4-5 years.... that was back in 08, now, is 2012, 4 years later, and the house is better, JUST FINISHED my kitchen, the kids and I are good and emotionally connected and have wonderful relationships with friends an family... the little things like finishing my kitchen, laundry, Walmart shopping, may seem small to "healthy" people, but when a person has fibro or any other chronic pain ailment, it is an "accomplishment" to do what most people take forgranted.... I am hoping this year is better and look forward to warm weather around the corner!

20 things not to say to an ill person

#1 – You look so good today! 

#2 – You just need to get out of the house more

#3 – If you stop thinking about it, the pain will go away 

#4 – You should just pray harder 

#5 – You must not want to get better if you won’t try this 

#6 – When I was your age I didn’t have the luxury of being sick

#7 – You’re sick again??

#8 – I wish I could just sit around all day

#9 – No pain, no gain!

#10 – I’d be sick too if I saw doctors as much as you do 

#11 – I have this juice that is working wonders…

#12 – You must still have sin in your life

#13 – If you got a job you’d have something else to think about – see more 

#14 – Your illness is caused by stress 

#15 – You can’t be in that much pain. Maybe you just want attention

#16 – What have you done to make God so mad at you?

#17 – There are easier ways to get attention

#18 – It’s not good for your kids to always hear you whining – see mo

#19 – When are you going to get rid of that cane?

#20 – I’m so glad to see you out and about feeling all better

*The original url for it is: http://invisibleillnessweek.com/2009/06/19/20-things-not-to-say-to-an-ill-person/ 

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!

suffering

Been reading a book called, "How to be sick" and it has been really good so far.... I have just started it and it talks about suffering.... and I love words and meanings and this really resonated and stuck out to me and I wanted to share it......

"There are two kinds of suffering, One is when we feel we're being pressed down; as though suffering is coming at us from without, as though we're receiving something that's making us suffer.  The other kind of suffering is being under, just bearing it, JUST BEING IT." ~Joko Beck

Fibromyalgia is the latter form of suffering, one that becomes a part of us, we are it... and it sucks sometimes more than others. Support is huge and I am thankful for the one that I have and all the wonderful people God has brought in my life....

past present future and somewhere inbetween

I have often wondered if there was a link between childhood abuse and fibromyalgia or other type chronic pain conditions.... I don't think we'll ever fully know if there is a link, but the one thing I do know is that by having a childhood filled with abuse and dysfunction, it is harder and harder when dealing with life as an adult.

I have hit the "wonderful" age of 35 and hitting on 36 soon.... heading straight to 40, noooo!!!!!! And as I get older and my kids get older, by brain can go... and my heart, as a mom, and a person, feels so much! I love being a mom and love having children.... But along with having the good and wonderful and even awe-inspiring at times, it can be so hard with my past and at times it rears it's ugly head......  Having chronic pain doesn't help, it's another weight that can weigh me down, heavy and suffocating and leaving me feeling alone...

Another of the many other thoughts that bounce through my head, it is their age, that I was their age when I endured the worst of my mother's rage and wrath? I spent the first half going through abuse and the second half burying my past, locking it up and throwing away the key, and THEN doing it ALL different!! And that is A choice... I love my kids and I CHOOSE to do different by them! Never in a million years could I do to them what was done to me! NEVER!!! (And this has taken therapy, I truly believe that to overcome such violent and traumatic pasts that it does take help and trained professionals are so helpful!! )

So I will continue to persevere, go forward, and get the help I need to be able to have a peace with the past.... maybe I will write a book, my daughters tell me I should, but they also say it would make them cry. I try not too make others cry from my memories, I try not to cry with them.... Life today is hard enough with just being a single mom.... and having fibro, now I get to deal with the past, woot-woot!! But it will be ok, the present is, the past is gone and the future, God holds it. I may not know or see what is in store for me and my life.... I see the gray and blahs and other times the brightness that comes from my kids and my family and friends... those that I really love and those that love me... I am so thankful for the family I have today and know that not only have I made their lives different by being such an integral part of it, but they have change mine forever as well!!! Thank You Lord for all You have blessed me with, everyday, even when I have a hard time seeing it.....

On Abuse

On abuse:

"The younger the victim, the more vulnerable he is. The more developmental skills and life experiences uncontaminated by trauma a child has, the more he has to draw on in the face of trauma. When life goes well, and children are loved and protected, each day is like a deposit in a savings account. Neglect, repeated physical abuse or sexual assault...or other life-threatening events, make huge withdrawals on the account. The more a child has in the bank when the trauma occurs, the better the prognosis for a quick recovery. Small children who are repeatedly traumatized usually have few deposits and easily become emotionally bankrupt. 

In troubled families, the thinking around who is responsible is convoluted at best. Abusive parents externalize, blaming other people, places and things for their behavior. They compensate by controlling everyone around them. But...in their heart of hearts...they feel out of control. They must blame others because it is too painful to take responsibility for their unhappiness. Children are easy targets because they cannot challenge their parent's thinking errors. Few children can argue when facing an enraged mother. Hearing accusations often enough, children come to believe that they are responsible for their parent's troubled behavior.

Feelings begin in the body, not in the mind. Many survivors say, "I know what happened wasn't my fault, but I still feel somewhat unlovable and damaged. My self-worth is measured by how other people see me. My head knows that is wrong, but my heart feels differently. Thinking comes much more easily to me...it's still a big risk to feel. If I ever started to cry, I'd cry a river. If I ever felt the terror of it all, I'd disintegrate into nothingness."

Beyond teaching children to recognize and articulate their feelings, parents help children to contain and express feelings constructively. When children do not learn how to do this they may become overwhelmed by them, experiencing them as floods. They may come to fear or loathe their feelings.

Adults from abusive homes can also become pain-avoidant. Survivors attempt to control the people and events around them so that they will never feel pain again.

What is most tragic about pain-avoidant behavior is that it is a defense against something that has already happened and cannot be undone. A survivor cannot live fully in the present until he or she has the past in perspective. Sometimes being preoccupied and defensive about the pain waiting in the future is just a distraction from addressing the real pain in the past.

To be intimate is to risk pain. There are no guanantees. To miss years of loving to avoid the pain of loss is too high a price to pay.

When the losses engendered by trauma are fully mourned, the trauma loses its power over the survivor. Instead of the emotional breakdown they feared...survivors experience an emotional breakthrough! Completing the grieving process means divorcing the trauma from one's sense of identity and self-worth. 

(from the blog: http://adultsurvivors.blogspot.com/)

*I am currently looking to see if there is a link between fibro/chronic pain and childhood abuse. Also, I have really been struggling lately... i don't know if it's cuz my girls are the age I was when it was hell, or if it's cuz in breaking the cycle I see all I endured and who my mother is now.... I am going to look into some counseling and have an appt tomorrow to check into it. ~B

Monday's day

Today is Monday... the start of the business work.... well, I had some personal business I had to do.... I had to tell someone that I cared about a lot that things can't go a certain way (at least for now), but I must say I was MORE than respected!!! It is hard to have to tell people things you know they don't want to hear and you don't want to have to say either.... but whether it be family, kids, health, timing>your's and/or God's, it is a time to heal for everyone..... but what they respect, is PLZ, tell me what's up!! They would rather hear the truth that be blown off..... I know I would.... I prayed and asked God for the words and it worked out.... and I am honestly glad I got my moxy and addressed the issue! God knows what He is doing and I am s

Same holds true for fibro.... I am NOT ashamed of my limitations, I am proud of what I do get accomplished! If someone can not deal with the fact that it is a day by day thing with planning, especially now with this "protruding disc" in my neck I am also struggling with..... even right I am feeling my a limitation..... I am gonna fall asleep sitting up here on the couch on my laptop, and that isn't good for fibro either.....

So to sum it all up, Jesus tells us to treat others like we would want to be treated and the truth will set us free.... and as we act upon His words, may He guide us and may we know His direction for our lives, lives WITH fibro, but still fill of life!!

Tx for reading! =)

Who I am in Christ

I sit here and think how different my life is now then when I was a kid..... boy have I grown up.... in SO many ways! Emotionally, life sucked for me growing up, it was just me and my single mom, and I don't say this with hatred, but she is crazy and it makes me sad but I can't have a relationship with her....

With all of my heart I believe God's purpose, His plan.... what He called me for; to break the cycle! And with His help, and only cuz of Him, I have made it... I still have room to grow, but I did this! Not by myself and not of myself, GO GOD!!! Only He can truly change the heart....

I look back at who I once was, an I don't even recognize her... I am now His, well, I was always His, I just didn't see it sometimes cuz of my stubborn heart! But God chose me, called me, and He will NEVER let me or my girls go.... He holds us close in His hand and with Him.

I can also say I forgive my mom, and even my birth-father.... His forgiveness, His love, all He asks, is that I give Him my heart, and He promises to love me forever and never let me go!!! God's love is so unfathomable!!!! And He is why I am who I am and who I'm gonna be! Without Him, I would have nothing to hope in, but with Him, I have true joy and love that can only be found IN HIM!

I love you Lord and thank you for saving me not only from my past, but also saving me from myself, and who I would be without You..... You make me a loving and caring mom and I couldn't ask for better kids either! Thank you Lord for never giving up and for holding and keeping "our little family" together in Your arms, where we are safe, forever and ever....Amen      ~B

protruding disc :\

MY ORIG POST, AND my friends in my chronic pain group(s) are WONDERFUL!!!

So I saw my doc today.... went well, trying a new 24 hour muscle relaxer (it's an older one, not supposed to make people as tired), will let you all know... AND WE LOOKED AT MY MRI, I knew I wasn't crazy, It shows disc protrusion between my C3 and C4 (in the neck) and it's bulging TO THE LEFT! Right where I feel the pain!!With fibro I am not a good candidate for surgery (with my fibro), nerve block (done them before) is what I will be looking into,AND I'm not as bad AS I WAS 2 years ago, so the recovery and such would hopefully be a lot better this time.... I have done the physical therapy, and that is TOO aggressive, does anyone have any stretches to push that disc back? It would be nice to actually fix this, not just block it if at all possible. (*I will be looking at the specialist the first part of January, doing some local shots here on the 1st of November and wanna wait til after the holidays, cuz the nerve blocks take a while while your nerve endings SLOWLY continue to die over a few week period, not fun!)

My Response to all their wonderful help and words of encouragement!

Ty everyone..... I am just feeling "blah" about it right now.... I mean, my fibro is getting managed, but this neck crap, ha!!! I wish I could just fix it, but no, gotta love fibro <insert sarcasm here>. The new muscle relaxer, actually it's an oldie, 24 hours and not supposed to make you tired, i took it this afternoon and still feel ok, similar to skelaxin i would say.... it is called, "Piroxicam". Oh, and to top it all off, my doc is preg (and i am SO happy for her, but she is gonna be gone from Jan 1st -April 1st) I asked her about it and she said they were gonna have a fill in..... praying for a good doc, even half as good as her! :\


*(This was what I posted on FB tonight).... I really wish and pray for healing.... I would love to see my fibro go into remission!!!!! One day and one step at a time!