That's what kept me going and that's why I married Bryan. We met when I first broke my foot. He hasn't known the athletic, clubbing, do anything, Heather. He fell in love with me for who I was. My pain has gotten worse every day. After a week of dating he was taking me to my blocks....I was having 3 a week for 4 months straight...Imagine that! He can't stand hospitals, if he sees a needle he passes out. But, this guy waited all by himself for a girl he barely knew will some disease that could destroy her. He took my heart then and will always have it. Now we are married and have a beautiful baby girl named Skyler Alexis and life couldn't get much better, besides the RSD. He has accepted it as part of our life. Since it has been in OUR lives since we met.

They keep me going...I look into their eyes and realize how important they are to me and all the joy and tears of happiness they have given me. Just remember that.

Your GF sounds like a RAD chick...You are lucky to not be alone. I almost was, But Bry came along right at the right time. Ahhhh, I love him!

So, no matter how crappy things get, look to YOUR higher power and grab your GF and surrender. Let your HP handle it for you. Just say that "Today I cannot handle this and I am going to give it all to you"....Watch what happens!

You probably think I am a whacko, but I have been through a lot of stuff in my 27 years...So, use it or don't. Just telling you what works for me and what has worked for others.

PC girl,

Heather

Rocker,
I am so impressed by your outlook on things. Truly you have a great attitude and determination to face this head on and still try to live as much as you're able. To be so determined to enjoy things is such a strength to have. I think your perspective on things is very uplifting. I'm so glad you're writing as well...I enjoy reading your posts, I can tell you have a gift with words and expressing yourself.

I agree with Tayla...sometimes hope can be lost because usually people who post here are suffering. I have seen posts and read elsewhere of people recovering or at least experiencing long remission periods. I'm so glad you brought that up Tayla! It's important to strive for these goals while accepting day by day the changes we've had to make and dealing in a way where we can still live.

We should also realize that there are people out there who can not, under any circumstance, continue on with life because of off the chart pain. I think of these people constantly; they truly break my heart. For those of us who still have some fight in us...it's very important to spread the word not only for ourselves but for those who are not able to. I can't help but to wonder if maybe that's part of why we're here, to understand the pain and to help spread the word...I would like to think there is some reason we are here. (For my own spiritual benefits at least)

I'm not an expert either...this is all new to me as well. I had a feeling I had this before I was diagnosed by a doctor. It took months to find someone who was able to pinpoint a reason for my ailments. I was told several times by numerous Specialists..."There's obviously something wrong, but I don't know what it is". Unfortunately my suspicions were correct...I have this horrible thing!!!!!!! It took a little whle after the diagnoses to come to terms with it and to accept it. It was like being given a Life Sentence for something I knew I was innocent of doing!

Now I think in previous struggles in life that I have had strength through, there have been many. I think of the determination it took to make myself an independent woman.

I broke free from an abusive marriage, and started a new life with my two toddlers. (Not easy to do at all!) I got my drivers license and found a respectible but low paying job. (No previous experience) I had to pay for Day Care (for two), I was the only one responsible to care for them while they were sick while trying to hold down a job. All this while finding my own identity which had been lost through years of physical and mental abuse. Through that experience I found I'm a fighter!!!!!! I fought for my children so I could give them a better childhood. I fought like hell to give us a future together that we could share in peace.

I'm fighting, once again, after re-gaining so much... only this time it's against something I can't just walk away from. I have to walk with it and build up courage to fight against it daily. (Sometimes courage is difficult to find on certain days)

I see you have this drive too Rocker!!!

Luckily, like you, I have support this time. I'm married again, but this time to a wonderful man who has given me my third child. I've not only found support through him, but through my treasured family, friends, co-workers and people I have encountered here. People in my life give me what they are able to give me through these difficult times. Again, they will never truly understand, however, the fact that they try is comforting and I'm truly lucky in that regards. I can blaime myself for people not understanding more or being conscieous of my disease at all times. Also like you...my pride prevents me from displaying my frailties. People forget what's going on with me...I think though...I'd prefer it that way when possible. It's like holding on to my identity in a way...I've changed so much and I can accept this, but I'm trying desperately to not let it go completely. Maybe it's that stubburness Sadra has mentioned!!!!!!

Heather, it's so impressive you have carried on through this and even had a baby. That's such a brave and optimistic approach to this. Cheers!

My mentor has been Sandel (Sandra) through all of this, she's been very uplifting and educational. Really read what she posts because the information she has shared with me has helped and had given me some great days.

While we still have fight inside of us...we can hopefully reach more painless days. For those who can't...I'll fight for you as best as I can.

You know, I aways come on here thinking I'm going to post something short and quick, but inspite of my freezing cold swollen fingers they still have a lot of energy in them. (SORRY)

Love to all...

GHL

Heather,

It really sounds like Bryan was almost, and, please forgive me as I am a believer in this, put in your life for a reason. It is so incredible, as you put it, that he went to the hospital, repeatedly, with someone that he barely knew; it sounds like he has a tremendous heart with great depths. And, as Greyhound said, you should be quite proud of yourself for battling through all this is, even with the support of your husband and others, but still making it a prioriity, because of how much you love your child, to be, truly a mother to her. Believe me, after 7 years at various psychiatric hospitals and group homes for girls and boys, there are PLENTY of HEALTHY mothers that don't even make their children a priority. But, you have to battle some major obsticles, on any given day, not only to combat the pain, but, to be a wife, and be a mother. And, it sounds like, minus, I am sure, the pain days that swallow you whole and you have no chance at beating it, that it's difficult to fully enjoy your family life as you would like to, with RSD, but, GREATLY admire, as you are a mother, a mentor to your little one, that you, desipite the pain, keep battling it, and still manage to be a great mother and wife. I am in awe of it really. Heather, too, it's funny that you mention turning to my gf or my higher power on those days when it reaches like that 8-9, and steadily rising levels. Ironically, I started doing that very thing way before this disagnosis, way before I knew what I was suffering from; I'd say back in late AUgust of last year. My gf, Cindy, when i just had what she calls"that pain look in my eye", as I inwardly fighting breaking down and screaming/cryng anyway, make me come inside, with a pillow on her life, her hands rubbing my back, and with the most gentle words that you have ever heard, encouranging me to let it out, scream if I have to, but realease all that I was holding in. And, being that she is "my safe place", she made it much easier to do that. It was difficult for me to allow her to see me that way, so vulnerable, in so much pain, but I surrendered to her love, her being my safe place, and her being willing to help. I do rememeber, however, during those same times, when I was there, crying and screaming out in pain, on Cindy's lap, that, I too, was talking aloud, to god, begging and pleading with him for help and surrender. I am sure we all have various terms that we use to deseribe what our pain feels like when it is off the charts on the pain scale,
but, despite the actual adjectives one could use to desrcibe the pain itself, I always felt, on the darkest of days, like the pain was "bigger than my body could handle." I used to desribe it that way a lot. Anyway, got slightly off topic, but, Heather, thank you for the advise and, again for the willingness to share your experiences. You are very brave, very much a soldier, and a fighter yourself; with, what sounds like an angel for husband!

GREYHOUND,
Thank you for sharing your experiences as well. Did you have RSD when you were getting divorced, with your two young kids? God, I hope not. That would be inconceivable to have to go through all that, especially with two young ones as well (be that, of course, stress is a major trigger for making RSD "flare" up or act up). I am very glad to hear that you left a situatation that was not good emotional for you, and then, in turn for your kids. And, in actuality, leaving, while the kids were toddlers, is even better, as they likely will have no memories of what disrespect your ex threw at you mentally and or physically everyday. God for you for having the courage to, number one, leave a barren marraige that was unhealthy and you weren't getting your needs met. Sometimes, choas can be "familiar chaos" and such an easy place to be trapped in/comfortbale with. It may be chaotic, the other person may emotionally abuse you or otherwise, but your know the other person well, they know you, and even if it's chaotic, you know what to expect. I am not condoning toxic relationships of course, just merely acknowledging the strength it takes to leave one; including myself, as I have been no exception to the rule along the highway of life myself. I admire the fight that you had in you to draw up the courage over time to leave a toxic relationship, while having to worry about the emotional and financial stability of the two young toddlers, the determination to find a job and make your new situation work. You, too, better pat yourself on the back for what a truely brave, courageous, hard-working, independent woman you are. I greatly admire that.
Though you have spoken minimally about your new husband, I am assuming that he is vastly different than the ex. I still admire your having three kids, your husband, and RSD all as roommates and all things that have to have time, love, and respect depovoted to them. Oh yeah, and you are working 12 hour days too. YOu are incredible emotionally strong. WOw, honestly, I am in awe. You set a wonderful example, through your perserverence, through your examples, and attitudes, that we all can follow. i am proud of you, so , dammit, you should be proud of you too.

Maybe the commonality that links us all is that we all are, in a sense, "soldiers"...battling little battles, or big wars, everyday, within and outside of ourselves. But, I think the best, strongest, best weapon, to take into battle is strong/stubborn will and the refusal to surrender (kind of like a Samari warrior). Whatever the case, lets all keep on keepin' on.

i realized, in re-reading...i need to make an IMPORTANT CORRECTION...I wasn't AT psychiatric hospitals, I WORKED AT psychiatric hosptails/facilities!

this is one of my favorite poems of all time...gonna include some excerpts...hopefully you can, as I have, draw some strength from it, even on the not-so-good-days..so here you go (author is Marge Piercey)
__________________________________________

FOR STRONG WOMEN (by Marge Piercey)

A strong woman is always straining.
A strong woman is a woman at work,
who talks about how she doesn't mind crying,
it opens up the ducts in her eyes, and she
keeps on going, working hard,
while shoveling through pain with
tears in her nose.

A strong woman is determined to do
something others are determied
cannot be done. She is pushing up
on the bottom of lead coffin. She is
trying to raise the manhole cover with
her headm she is trying to butt her head
through a steel wall. Her head hurts,

A strong woman is bleeding inside. A
strong woman is making herself strong
every morning while her back throbs.
Every part of her body and story
is a battle scar. A strong woman is
a mass of scar tissue that aches
and bleeds, when it rains
and wounds that bleed when you
bump them and memories that get up
in the night and pace in boots to and fro.

A strong woman is a woman who craves love
like oxygen or turns blue choking.
A strong woman is a woman who loves
strongly, and weeps strongly, and is strongly
terrified and has strong needs. A strong woman
is strong in words, in action, in connection,
in feeling; stength is not in her, but she enacts
it as the winds fill a sail.

What comforts her is other loving
her equally for her strength and for her
weaknesses from which it issues
lightening from a cloud. Lightening stuns.
In rain, the clouds disperse. Strong is
what we make each other. Until we are strong
together, a strong woman is a woman
strongly afraid.

Hi
Thanks for the poem, I think everyone is strong when it comes to dealing with RSD.

GreyHoundLover,
Thanks for your kind words...We planned on getting pregnant before we were even married because my RSD had just gone full-body and I was afraid we wouldn't be able to have kids. I got pregnant in 4 months of trying and had to stay on the Fentanyl Patch 75mcg/hr..luckily I went into a slight remission from 6 weeks - 30 weeks. My first flare-up wasn't until 1 month postpartum (2 weeks ago)...I guess your body takes about 6 months to return its hormone levels to normal. So, since I had just gotten full-body, I simply forgot the really bad days. They are slowly returning. We had our ANGEL...My husband and I don't think I could go through another pregnancy with RSD.

I am going through a tough time right now. I am dealing with a million meds, home alone all day with Sky, lil bit of postpartum depression, and not knowing what to expect with my pain in the next couple months.

Did you have your kids with RSD? BTW, you are an inspiration to me. To take care of one baby is enough. I couldn't imagine being a single mom with two toddlers. You are incredible! And to make it through a nasty divorce, I couldn't imagine...you must be a "ROCK"!


JcrewRockStar,

Much Thanks to you also! I loved the Poem! My favorite insert:
"A strong woman is a woman who loves
strongly, and weeps strongly, and is strongly
terrified and has strong needs."

So, I called Bryan at work and I told him that he was my ANGEL and he said, "I know"! lol..

You make me feel so good with all of your compliments. I was having a pretty down morning and you brought me right back up.

I Love you both already very much...you will both always hold a place in my heart!

Heather

I think it's great that you called your husband at work to tell him he was an angel. Sometimes, we just have to remember to, make every effort to, show gratitude through our words, or the small things we may be able to do, to those who stand by our side without fail...sort of, as you put it, "an angel."
Going through what we already have to go through is tough enough, but, I know, personally, for me, my gf is my "safe place" and that she is more medicating, in her mere presence than any inject or pill has ever been. My heart goes out to anyone who has to go it alone.

Bry is my "safe place" also. It seems like my pain is always higher when he isn't home. But, the second he walks in the door I feel a sudden lift of pressure...it's very cool!

I agree with you about putting your heart out to those that have to go it alone. I am sure that you could agree that you would be absolutely miserable without your GF. I don't know where I'd be without Bryan. He has picked me up, literally, so many times when I have fallen. He has seen me at my WORST. The scary thing is that I am only 27 and he knew what he was getting into. He jumped anyways!


Heather

That was a really funny mistake though! LOL