A Winner Of A Milestone

A milestone beyond comparison!

Today marks the FIRST day since my car accident that triggered the pain of RSD/CRPS that my family will do their job. My husband will go to work and do what he knows best, Warehousing! My kids will get up and do their job, go to school without fear.

I will be home, alone :~) my job has changed, I now advocate for others and help to raise awareness to this syndrome, I also help to raise flags on other important issues I would have never looked at unless I was diagnosed with RSD/CRPS like food and alternative ways to heal the mind, body and soul.

No one to step on toes with, I can do all my little ADD things without anyone saying anything. I worked hard to get to the point in my RSD life to not need. My husband helped so much in this. The pushing of "you can and you will" made all the difference. I'm sure some of my choices helped too, but I'm on me and my family right now :~)

RSD/CRPS is a bitch of a syndrome, there is no denying that. It hurts and kills people; it breaks down a human like nothing else. It tears apart marriages. Children of the afflicted are dying not knowing what to do. Not for lack of trying, this family attempted to be in therapy and all from the get go. Still my son and husband had a breakdown. Since the breakdowns, it drew attention to the issue that so needed to be addressed, the whole family!

Accident 12.2.09

DX of RSD 1.11.10

Son Breakdown 5.26.11

Hubby Breakdown 10.13.11
Created Support Group for whole family 11.24.11

Both Kids in school enjoying life 9.4.12
Husband back in his Career 10.18.12

By no means is the healing done, but we are now on track. Before moving back to Texas, we did lots of therapy. Intensive Transitional Therapy for both kids in home and out, Marriage Therapy, Family Therapy. I swear by therapy, it is the building blocks needed after a big traumatic accident and diagnosis. If the breakdowns had not happened, we would NOT have been able to get therapy. Even with all the private insurance or cash in the world, you still HAVE to have a therapist be willing to treat you.

Education is still needed, small towns and even large metropolitan areas need our voice to remain loud. New demands from the RSD/CRPS Community, of the Health Community are helping to pave the way for those being diagnosed today. We have been told not to be quiet and that our voice is important. Thank you to the other's diagnosed way before me, they told us how important it was to stand up for ourselves and our family and to advocate and help others when we can. In keeping this in mind, I will every day do something for others and my family. We have stood tall when others, even family attempted to beat us down! I will not let RSD/CRPS win, it does not own me.  The tools we had been given for so many years needed modified.  This takes time and willingness to change.

Today, RSD Doesn’t Own Me or My Family! It is hard, but letting in the good times and not giving up when the bad times are here is so imperative.  Today’s struggle is different than yesterdays and tomorrows. Today you can decide to not let RSD Own YOU! We are on your side today and everyday! Thank you for caring, I care too.

The RSD/CRPSer

Blessed I am

I wanted to take a second to reflect. Reflecting is and can be very healthy done the right way. I have met some of the best humans ever in my short life. I'm only 2.5 yrs old in this life. I was born way back in 75 with the help of my mother Julia. She raised me with such pride in all she did. She worked her way up in a company that is so good to their people. They treated her as an equal in a time when women were just really getting deep into companies. We didn't have much money when I was very young but this company changed all that for us, all because of equality in the workforce. She showed me so much growing up, how to stand tall even when you don't feel like you shouldn't have a right. She taught me how to stand up even to Newt Gingrich in Ga when I was 16. She taught me things like how to enjoy the beauty of a sunrise out on the lake. She has taught me so much. I know, I have never ever given her the credit she deserves! I don't think I really know all the words to describe how wonderful she is. 
Reflecting still......Current day reflections. 
I have been given this pleasure to change, change things. I know when I got my DX of RSD,,,,chuckling,,,,I was so angry, angry at the world. I had no idea! I knew there was some reason even as a kid, I KNEW! I knew I had a purpose, I do, I always did, it's so hard to see it when looking into the eye of the world as it is teaching you so much. I had been given all these puzzle pieces and had, had no idea that in only 1 year and nine months, I would have figured out anything but my cure. I looked into the world as a whole big picture master piece. With-in a year I had experienced so many TRAGIC things in my new life. I knew; I had created this vision in my head, my head had been holding onto these ideas of what my life and other's life with RSD would and should be more like. I had talked with Samantha one late night. I had opened up to her and she told me "it only takes one to make a difference". I told her I was going to start. She came to me in Nov last year saying "I need that group info for the cook book" OMG! AHHH I had to do it. So I did. I made the group, I knew I had been supported, I had been given such a therapeutic life. I had been taught so many different types of things in life. I keep saying to myself, "if it was not for all these people, where would I be". 

Today my/our Bay Area Support is making a difference in others lives. We are becoming the best of friends, we have pushed each-other so hard we cried from the pain. We came back and showed each-other why we do what we do here. We do workshops, travel to bring meetings close to others who have RSD (WOW). Talking all the time of how to change another life! We included the whole family, kids are so wonderful, why should they not be heard too. I love you guys so much! Thanks for caring cuz maybe I cared. 

Today, is no different than 2 weeks ago and 4 months ago and 1 year ago........and on... Everywhere I have been in life I have been blessed. Tonight I look into the yes of the world and know why I'm here. I'm here for the RSDer. I'm here to make waves so things get changed for a better NO MATTER WHAT! No one left behind! 

I would like you to take a moment and reflect on all the bad that was good for us, it taught us to be who we are, be proud of who we are. I would like you to reflect on how you can make life better for you with a change of perception. Perception in my big eyes are so important for me. Don't think for a moment that I don't know that the flash of RSD can't come up and bite my fanny in a way that would make it feel like I was starting all over! I am only human and realizing it and knowing that life lessons are beautiful and make us who we are. 

I am beautiful and you are too. I love me, I maybe little....but I'm so worth anything and everything and so are you. I wish I could write more but it's dinner time. I love all that I am because of my mother and all that has happened to me, even RSD and mostly the people!

Facts Only Please!

First; this is a fact to me. I live my life with RSD/CRPS on only proven facts. Even facts about using post it notes placed all over you home for you goals and such. Treat with human dignity, love and respect. Eat breath live what you want! It just might help us all move faster toward World Peace.

Story goes like this; I just had gotten off the phone with my mother. I called to tell her I was in my worst ever RSD Flare, in which she then told me of her bad news, I'm glad I was able to be there for her in time of need. Both were a pain that runs so deep. We had an adult conversation. Yeah! We both shared! Yeah! Score for us! She got to hear how Brain Fog, my ever changing RSD brain works when I'm flaring. I dislike this FACT so much!

We hung up and I went into kitchen to get a water. (Water has been proven to help reduce the swelling and muscle pain) Fact! No DR ever told me that, I actually have educated all DR's I have come into contact with. Fact!

went into kitchen, got there and couldn't figure out why I was there. I went back to room. Sat on the bed and realized it was the water. I went to get it and saw next to the frig the recycle bag had yet to be put up. OK, add the since I'm right there. Go back to room and for gotten the dang water. Only now I'm worn out. I got the water right next to me now, I had to sit and write about the about how RSD changes our brain. Our memory goes and then dementia can set in. FACT ; I don't like! I got lost going to pick my daughter up from school last Monday and called my in laws for help to get me there fast, I was now late. I had to tell my husband. 

Communication of your REAL right now is so important. There is roll revering and addressing such full range issues of the family unit to be a success therapy is suggested by me and my whole family unit. FACT to us. Not Pain Management but a general counselling. Even when you not thinking you need it, you do. If children are in the home, they need it too. FACT!


Oh, important why this is coming right now and in a bad flare up.  I needed to sit my butt down cuz, I'm flaring and have zero strength and I needed to sit and not push any longer, for as in my flares, I go from able to disabled. Muscle are on fire when in use. New FACT to me! 

* This text can be sloppy and the flow may be off. Thank you for spell check and your understanding!  After writing about it, I'm not angry at myself for my inability, I'm at peace with it. 

Guest Posting Cajun Man, Jerry Paul Pond

I have found in my life that there is nothing like having you in it.
Your only requirement of me is to be myself and you are yourself
With you I can say whatever is on my mind, you know that you never have to worry because what we have is based on love, hope and is not based on perfection, but on respect and acceptance

With you we can share most things, knowing that the beauty and value of each is a part of us both we be recognized and appreciated.
Where distance has no meaning or power, the bridge we built is made of love, hope, smiles, laughter understanding, memories, joys, and a little sorrow; this is what keeps us connected

With you I feel safe, your there for me anytime, even through the roughest of storms in the mighty swamps of life.
I know that in you I can trust, I can believe in you and count on you, even in long distance I know that you’re at my side and you give me peace within my heart, because of you I am never alone

Because of you I have a heart filled with happiness, love, smiles, laughter, hugs, sunny days when the sun is not shining and hope

Sending you Cajun hugs and love
Thanks for just being you
Love you 

It's Hard To Explain

It is hard to explain to someone when all of a sudden your body hurts in such a way that is so far from your normal everyday self. When it hurts so bad that just holding a paper plate makes all your muscles from the shoulder blade on down to the tips of your fingers feels like you just the hardest work out of your life on each and every muscle in there. There is no way you can just give me one more pull up, well it happens to RSDer's everyday. 

Not that we can give you no more but rather, just right now. Each of us flare up differently, with the pressure changes on top of Flare Up, we are then faced with even a newer different feeling that even we will never be used to. Take a moment to educate. 

Studies have been done and have proven, that the use of Vitamin C, 500 mg for 5 weeks! can help in reducing your chances of developing RSD both before and after surgery, and after injury. 

Makes me think we all need to just eat better all the time to prevent most disorders and syndromes that face human life. 

Written based off life with RSD, why? Cuz I do care! Share and make aware!

Guest Julia Carriker My Mother

When a generic drug will cure or alleviate horrific pains in a family member, but insurance won’t pay for it, as it has not been studied .   Why it is not studied? The answer is, in that it is already generic, so there is no motivation because no big money will be made,  so no one will pay for the study.  Insurance companies use this as a justification to say that they will not cover the treatment.  Capitalism at its worst.  Damn CEOs can afford it though-

 Now you are at the mercy of the only practitioner that will give the medication, which has not been studied, but which works.  Next you are exploited to get this generic medication and overcharged by the private physician.   

You might get it when you have to pull the rest of your 401k out (after the crash)  out in a loan to pay for these treatments that are$ 1500 a day but are the only known medication that truly relieves the most painful of conditions called RSD/CRPS.  People even leave the county to get into comas to try to alleviate this pain, but a family can be devastated, lose their home be destroyed by the illness, and there is no help.

 Is humanity this unkind to each other?  No, but COMPANIES are, and they do not care. It is up to you to CARE ,  it is up to you to !!! OCCUPY  !!!  demand kindness- WE are the 99%  WE all deserve better than this.    

RSD/CRPS can happen to anyone after an injury as small as a bee sting, or after a surgical treatment to a limb, a break of an ankle, a sprain or a variety of other injuries. .  The medication is a generic called Ketamine.  It is very safe when used in anesthesiology, and is often used because of that when an unconscious un reporting   patient arrives.

I saw a family devastated by this illness when the mother got it all over her body after a car accident and injured her ankle.  The disease spread all over her body to all of her limbs.  The home she lived in became too hot for her to physically tolerate as pain was too intense to handle.  Even breezes from  fans on the skin are too much, and thread on sheets  are too painful,  even touch at all is too intensely painful to be tolerated a times sometime atrophy attacks as well, and limb use is lost. The pain of this illness is one where people will result to treatments such as a coma to get relief.

People do not know about  this illness so I usually tell them to think about House the Dr on TV and his foot, and issues with pain meds and  different experiences.  He has this disease in only one foot. Fictionally in the TV case, the pain stops end take. 

Funds were exhausted, the family had no choice but to leave their home and search for a climate that would cause less pain.  There is no help for them as they search, no services for ‘transients’ ;  it should have never happened.  The insurance should have paid for the infusions from the beginning.  The CEOs and such decided not to pay.  The family was devastated financially; the husband, left on his own,  with two devastated children, the mother still in pain-horrific pain, and no help. When a person can’t even be touched is crying in pain and a generic cheap drug exists but they can’t get it, this should be a crime. 

Put them in handcuffs for their cruelty        OCCUPY  !

Is humanity this unkind to each other?  No, but COMPANIES are, and they do not care ABOUT PEOPLE.  It is up to you to CARE ,  it is up to you to !!! OCCUPY  !!!  demand kindness- WE are the 99%  WE all deserve better than this. 

Guest Daniel Winner

Much like a wild horse just broken, he felt the yoke of reality placed on his head and around his neck.  The rose tinted glasses he’d worn for so long, now cracked.  He’d a new found understanding for reality and how it not only affected him, but also how it affected others. 

Life could be warm, like a fuzzy sweatshirt fresh from the dryer on a wint..

Guest Star Carly Donaldson

She's Damn Crazy

A ten in her pocket and a little-a change

And the fact that she’s been changin’ her ways,

She’s gotta figure out a way ta’ survive,

Without takin’ away her pride.

She’s had 35 years to have it all figured out,

These crazy ole’ dreams are what she’s about,

She’s got all of us, but she’s away.

I miss her hugs, and this is what I’ll say:

Chorus 1

She’s damn crazy, but she wears it well

They’re mad in love, can’t you tell?

They’ve been through heaven and through hell

To get to what they’ve been searching for all year

Da da da, dadada.. Ba da da, dadada, da da da, dadada, dadaaaaa....

This madness that they demonstrate,

Just hangin’ around on holidays.

Simplistic life, no time for regret

This poor old woman that you haven’t met

Her ideas never change

Crazy thoughts and crazier games

A know-it-all by her side,

To keep her alive, by-and-by

She’s damn crazy; can’t you tell?

He’s just a boy that somehow

Got into life and out of this house

They’re together, and this is what he says:

Chorus 2

"She’s damn crazy, but she wears it well

We’re mad in love, can’t you tell?

I’ve been through ‘er heaven and her hell

Just to get where we’ve been searching for all these years."

“These crazy dreams right in front of me,” she said,

As she was breakin’ down in her head,

“I can’t figure out how I got here,

But I’ve known all along that this is where we’re from,”

Ba da da da da, da da da, dadada, ba dada, ba dada, ba dada, dadada

(Chorus 1) badadadadadadadaaaaaa….Searchin’ for allllllll yearrrrrrrrrr

Guest Posting Daniel Winner

Much like a wild horse just broken, he felt the yoke of reality placed on his head and around his neck.  The rose tinted glasses he’d worn for so long, now cracked.  He’d a new found understanding for reality and how it not only affected him, but also how it affected others. 

Life could be warm, like a fuzzy sweatshirt fresh from the dryer on a winter’s eve, or it could be cold, as a frozen tundra ‘neath a wintery peak in the driving ice.  He now realized that she experienced both ends of the spectrum, in multiple ways.  Emotionally, spiritually, physically and philosophically she was thrust into a position that altered her world into a non-objective abstract in which there seemed no end.

The thought was humbling.  How could he consider himself tough, let alone think of himself on the same level has her?  She truly was a great person, if only those around her could catch just a taste of it, what would they do?  What could they do?

The truth is nothing.  At least nothing that would help.  Shed a tear?  Offer a supportive hug?  While both strong expressions of human emotion, they both serve the person emitting them, not those which evoked them. 

Here nor There, Just is

I find, I'm this person who still wants to achieve. I work hard for these things, no, I didn't find these things in a paying job, but I did find this work to be work. I enjoy it so much. It gives me this high, a high of life before RSD. Before RSD I got this mania from being Bipolar and often the mood swings that came along with it, today it has been a bit refined. It had to be, otherwise I was going to be stuck in this world of pain. Not just physical but mental pain. I was a fighter, right? Yes, YES I WAS! I am going to fight the best way I know how. 

We all seem to do what is the easiest right? I found that I could help other's understand how, life with RSD didn't have to be this horrid game of DRs and medication. Not everyone can do this and it doesn't ever mean that I won't go back to it again. I'm still a stage 1. It does not mean I'm lucky or that I got it easier. We all have our bad days along with what I call a bit of salvation from something much more powerful than me and RSD. This also doesn't mean that I'm thumping up on the Bible either. It just means, I'm human. 

I worked my fanny off last night for the other RSDers and my hubby, he worked hard for us too. He works his fanny off (it is gone already) shhhh, for the caregiver and the RSDer. Does it mean we will try and fix. HECK NO! Just to help to understand, understand what it is like, what options are out there, our experience and most of all, that you are in control of so much. You have the power much more than any DR has to help yourself. 

Yes you! You with proper knowledge can make your life a bit better. When we are armed with knowledge, we are impowering ourselves to the greatest of our ability. When you are armed you make better decisions too, not just for you but for the entire family unit. Why? 

I might piss people off with this or they may look upon me different but that's OK too! We are all unique! 
Because, I care!