Promoting Awareness- Your thoughts and stories welcome.

In the effort to promote awareness, resources and information regarding Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome, aka, RSD, RSDS and CRPS these sites have been created so that understanding might come from them.
RSD Advisory and RSD Advisor are mirror dot.com sites

www.RSDAdvisor.com and www.RSDAdvisory.com

Here at RSD Advisory-WordPress you can leave comments, add your own stories, and tell the world of anything you might like to add. Just add it to the comment area of this post or one of the blogs that best fits you.

Thank you for supporting my passion to promote education, to date there is still no cure.

Best of wishes to you all

~twinkle/ellaj

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Emotional Seperation- RSD in Flight by twinklev

Emotional Seperation

(RSD in Flight)

by twinklev

Written Sept 6, 2005 to current


I have taken the time to write this in an attempt to let my thoughts out enough in hopes the reader, Doctors, Attorneys, or even a Judge may understand and possibly see into atleast a portion of my life as I’ve led it in the last 4 years and 9 months.

I was injured while working at Tower Mart, dba, Tower Energy, January 26th of 2001. I was taken to the hospital from my work place nearly immediately after by ambulance as per the decision of Rose Russel, the Assistant Manager, and Vue, the store Manager, who’s last name I cannot recall anymore.  From the very beginning, that first hour inside of USD Medical Center, there have been errors.  From the first diagnosis, a sprain, to this day, a series of  new and/or additional diagnosis’ that not only included the initial pain, but continuing pain, and eventually pain that never eased. I had surgery to repair dislocated tendens, a mid meta-tarsal seperation. It was screwed back together and the screw removed nearly 6 months later.  I completed 8.5 months of physical therapy back in 2002 or soon after the new year of 2003.

I believed with all of my heart back then that I was on my road to recovery and mobility again. A full normal life, as it was before.  I terminated my child, my husband of 18 years’ child.  It was done with hope in my heart, faith in my soul, and trust in mind that I just needed a few more months to heal. Though, I am sure no one has put this in writing, I was advised, perhaps on a friendly basis and not professional, by Dr. Docharty, my Physical Therapist, and an Assistant at Physical Therapy, that it was not in my best interest to carry a child at that time. The weight gain alone would have been detrimental to myself and probably my child.  I say probably because there were other consequences.  I was advised by the pre natal nurse at my OBGYN that the Ultram and Celebrex I had been taking for pain was a Class C drug and I must discontinue them. Vicodin was acceptable, as a Class B, but was best one didn’t take it as I was in need of.  There were other forbidden medications in my system. None of which were illegal street drugs. I had atleast 3 Cortizone injections. I had had numerous X-rays, my body uncovered, and so my baby was also. It is true, no one forced me to do this, and I will not even pretend to suggest it, as it is the untruth.  However, I chose to do so under a false pretense. It was no different than dangling a piece of raw meat before an animal and expecting it not to bite. I bit. I believed I would heal, do so, get back to work, help provide for our two daughters, Kharisma and Erika (Erykah) ages 11 and 12, at that time.  And our little son, Kurtis, only 3.  Lets move forward to sometime in 2003. By this time, March 31, 2003, I had become permanent and stationary and was no longer being cared for by Dr. Docharty. I had been told I could return to her if I worsened or needed to do so, but that never happened. It was not allowed. On my own, I sought out Dr. Michael Uro. Under his care for a few months with no progress, I was weak. Walking and standing hurt too much. Far too much. I wanted to fade off the vicodin because it was a narcotic and I’m not sure at which point anymore, but I did. Instead, I had switched to darvocet, used so many over the counter medicines/vitamins suggested by him. Glucosomine, Chrondroitin, Msn. Muscle patches, similar to Icey Hot and such. Tried Cortizone injections, 2 times, I believe.  After that, He chose not to do anymore.  I can not presume to know his reasoning, but my current Pain Manager, Dr. Michael Levin, will not either. I’ve asked, but I have not asked why.  Perhaps because I had already had a minimum of 2 given previously by Dr. Carla Docharty. Let me go back just a bit.  Dr. Docharty’s personality seemed fine.  She was friendly and pleasant to communicate with.  Dr. Uro’s disposition was more abrupt and his demeanor cool, meaning not seemingly friendly. Between the two, and having had it replay over and over in my mind, every detail that I could recall then and those pieces which I can recall now, I would have to say I respect Dr. Uro more.  Now, all these years later. Nearly 5.  As I write this, I’m still hurt, physically disabled, limited, without piece of mind, or quality of life and even more so emotionally.  Let me say this now before I forget… My life was not on the downside in the least prior to my injury.  My husband, our children, we were well.  My children and I spent countless hours going to malls, rivers, the lakes, to the parks, we laughed together, we sang in the car together when we took their dad to work. We took him so that we could keep the car and have fun. And we would. We’d dance together. We would even be silly and dance on footstools. We were all alive. Downfalls? There were a couple and we survived them. Everyone has them. Anyone that says any different are lying to themselves and to others.  My strength and ability as a perfectionist made me able to survive it all and then some.  I could look challenge in the eye and laugh at it.

Not a single situation or moment in my lifetime, including death, and a fire, had brought me down like this has. Nothing!  Ever!  This is crazy! This is beyond my ability to control and make better.

All those things people do with their feet? I don’t. I am lucky to go to the grocery store with my husband. Fairs, Auctions, Water Parks, all those things the kids would love to do, and I’d love to do with them. I couldn’t even imagine doing, anymore. Or even ever doing again. I live with a pain level so high, and far from normal for someone who seperated tendens in her foot. I do not feel sorry for myself, I’m down right mad as hell now. I began to hurt myself to divert pain. My motor skills are shot. Speaking anything close to properly is non existent it seems. I feel stupid more than not. I feel….   I feel detached from myself. On the outside looking in, and then from the inside looking out.  Or maybe it is that I’m detached from who I use to be. My memory is usually gone before I even have a chance to recall that I’ve been asked something. My responses and answers are delayed and seem to only be um, huh, what, and pardon. Aside from my immediate family inside the home and my best friend, Annie, mostly, the only people I come into contact with are from online chatrooms.

I was told recently that my foot can be fixed. A QME advised me of this. He said Dr. Docharty hit the nerves in my right foot when she did the original surgery on March 16, 2001, but that it could be repaired. I was asked if I wanted the surgery to fix my foot. My immediate response was yes!. I was elated. I couldn’t have been any happier that very moment. When the appointment was over and I returned to the car where my husband was waiting, my mind started swirling again, and I began to suddenly lack belief and trust. He did not give me any reason to dis-trust him, I dis-trust the system, the process, and all those directly involved in it. It did not surprise me to learn that Dr. Docharty may have errored or failed to recognize that something else was wrong and progressing. I never stopped complaining of feeling pain and discomfort.  My body knew something was wrong.  I was never pain free.

It comes down to this- The entire last 4 years have been a lie. I do not believe I should have ever become permanent and stationary. I think I should have been fixed when I was suppose to have been and before ever being dismissed from Dr. Docharty. I told her something was wrong and it hurt too bad.  The swelling, the color changes to the skin, the sensitivity, the pins and needle sensations. Dr. Uro himself didn’t understand it, though was the first to diagnose Complex Regional Pain Syndrome, also known as, Reflex Sympathetic Dystrophy Syndrome. He referred me to Dr. Levin who confirmed that diagnosis.  Since 2003, I’ve been led to believe I’ve had RSDS/CRPS.  Learning to live with a diagnosis, reading on it, researching, trying to understand it. Believing that with understanding I could learn to embrace it.

Now this is another lie that I’m attempting to deal with.  The QME said verbally in his office that day that I did not have this debilitating disease.  The report reads that I do, agreeing with both Dr. Uro and Dr. Levin.  Good grief!

I do not doubt Dr. Levin. In all that I have learned about RSD and having done online research on his credentials, I trust he’s well qualified to make the determination that he did. He has tried for authorizations since I’ve been his patient, I am not even sure how long anymore, over a year, so that he could try pain/nerve blocks on me. (To date, 2.5 years) It had been requested, documented, stressed, reported that in April of 2003, I should have returned to tempory disability. I could have atleast been free of some pain while everyone decided to do whatever it’s been that they “haven’t” been doing.  ~sighs

I’ve been going to Behavioral Health under my husbands insurence for nearly 2 years now.  By 2003, I was beyond depressed and I had about lost my mind and needed desperately to learn how to cope mentally with physical pain. About a year ago, I was diagnosed with Bipolar 2.  I have used alcohol as a pain killer to self medicate. I have used it heavily. Two summers ago, at the advice of Dr. Levin, I went to Alcoholics Anonymous because of it. I had been binging on a regular basis. I had finally gotten a pretty good grasp on controlling it. I tried other techniques. Techniques suggested to me by Maryanne at Dr. Levins office, by Dr. Levin Himself, by online support groups.  Maryanne has been kind in helping me to use different methods of venting frustrations. We’ve talked about soothing music, or when I’m in my destructive moods due to the severity of pain, other ways besides causing bodily harm and injury to myself to alleviate the pain. Nearly all of this pain exists even when laying down or sitting. Imagine standing? Walking? Just imagine..

I was asked at my second deposition if I had ever hurt myself or thrown a fit in front of others. That is how I remember the question, anyhow. I think I answered I wasn’t sure, or that it was possible, or that It was generally in the home. It had taken me days to recall the deposition in it’s entirety, and even now, I couldn’t really tell anyone what exactly I was asked, but I did remember portions, and I discussed those portions with my husband.

I was embarrassed when he spoke of the number of outbursts, I’ve had in the presence of others. I even felt appalled at my actions. I didn’t remember. I only remembered the times I’ve done so before him and our children. Maybe because of the impact it had on my feelings after. The heart ache and humiliation of doing so.  Since that day, I still feel terribly bad that I’ve subjected them to these behaviors.  It’s all wrapped around hurting. Hurting, over and over.  I just can’t get enough peace to be normal, I suppose. And it’s at the hands of 4 years of remaining broken.  I did not cause this of myself, the actions and lack thereof of others did.

It was an unsafe work environment the moment I arrived to work that evening. I’ve told the part about the actual events of the injury time and time again and a mention more than once about the condition of the store, but I fear that I failed to stress an accident, if you will, just waiting to happen.  Both Managers admitted to this upon arrival to the store.  Neither were there working, of course, it was I who was acting supervisor, no others were present aside from myself and a brand new cashier.  OSHA would have loved that.  Anyway…. .

I lay back with my eyes closed various times of day, evening and nights, elevating, trying to find solace, and I loop. My mind loops about it all like a broken record. Over and over. It does not stop. My psych meds are in high doses, and it still doesn’t stop. My emotions move from hurt and sadness to anger and frustration to feelings of absolute worthlessness that it’s hard for me to believe I do have worth. And then my emotions skyrocket into thinking it’s a conspiracy. That is too light a word… It is that without care one doesn’t heal, my care was substandard, and so I have not healed. I do not believe that I will. It is no longer just the original area that is afflicted. My entire body hurts. I find it hard to trust any new doctors. Kick a person down a few dollars, and they will do or say just about anything. How do I know where their ethics lie….   other than in a lie itself.

I should have screamed louder along the way to all involved in the medical and legal aspects of it all and not at my husband and children. I failed me, I failed them and all those directly involved with me in regards to my injury turned out to have failed us all.  It had always been important to me to serve my master, the home, make him happy. A happy wife and mother instills a harmonious home. I have not brought harmony to them, in years now. Oh yes, there have been times we have laughed together, and giggled, been silly with words, etc. Our family time became reciting movie lines outloud and to eachother just for those few minutes with one another as a unit. A whole unit. My oldest daughter has had the toughest of time since my injury.  School, low grades, poor attendence, continuation high school, friendships/relationships, verbally hurtful outbursts just for the attention she craves. My Kharisma sought comfort in the arms of a boy and now carries his child.  Her life is ruined, or perhaps I should say.. her life as a teenager or near future as she has opted to keep the baby, and the father has opted to not marry or provide for her, though he remains a part of her life as a close friend.  She played the flute beautifully, as I started her in the 4th grade.  She quit nearly 2 years after I was hurt. She doesn’t speak of goals or a career. Many times, I have approached the subject with ideas, decisions, leading a content life out of the home. Her own words are that she isn’t good at anything, that she doesn’t have any interests. She possesses a soft heart with a warm personality. It is an ugly feeling to hear my child doesn’t believe society will accept her because money isn’t flowing through the home and hasn’t been. And that 5 years have gone by that her parents could not even accomplish to have some saved for an after high school eduation of some kind.  I suppose even she had already known 3 years ago that nothing was about to change again for the good or close to how it had been. My Erykah is much stronger on the outside, she is like her mom, we can take much, but we can’t take all of it, forever. She is bright, plays nearly every musical instrument there is.  She does wonderful HTML, designs truely nice websites and pages.  She hand codes the language, as I had for years prior.  I am glad I had done something fascinating enough to catch her eye and keep it twinkling.  She is also in continuation high school, not for poor attendence, she rarely misses any, at all.  But for being bored, having spun thoughts of mom, and having the need to be the class funny girl, laughing outloud at whatever spoken word or action that poked at her funny bone. Erykah will return to the regular high school to graduate next year. It may have been noticed that her birth name is Erika, named after her dad, but that she changed the spelling of her name a couple of years ago to Erykah. Her father was hurt at the change, as I named her after him and his mother, erykah’s grandma. I spoke to erykah of this, asking her why she chose the change, her response was that her mom is Twinkle, and her sister Kharisma, she wanted to be known for a special originality as to what she was called also. I had understanding and compassion for the change because I knew she craved to be found as standing out just a little bit more than most others. Erykah had a mom full of charisma, an abundance, just out right full of life, playful, outgoing, caring, loving, and loving to smile and make others laugh and smile. She wanted that too, and I wanted her to be it. It does not hurt me that I named her, and she has decided to alter the spelling, she is still and always will be Erika, the same erykah I named after my husband, Erik. Just her name in a newer light, is all, and it’s beautiful.  And too, I needed to give her something, a gift from mom to daughter, my blessing.  She has goals and hopes to become a Crime Scene Investigator. Yes, this may change, but atleast she has placed thought on her future and what she would like to be when she grows up. I see her hurt, we talk. We have had lengthy conversations, when the moments are right.  I have layed awake listening to both of my daughters talk to me, just to hear them share their lives with me and guilt overwhelmes me when I fall asleep on them. Or listening to their words, and being so far gone from various medications, I have to have them repeat themselves and often times, I still don’t hear it. And then there are those times, more often than not in the same different individual seperate conversations, I do hear them, I do. It is just that I forget 5 minutes later. And then there are those times of really good discussions about life, our world and living in it. All those really great and exciting days in it.  Each endevor being more purposeful than the one before it. I can smile just saying this because we’ve dreamed up the impossibles many times over.  And we beamed into eachothers smiling eyes like three little girls together in a chocolate factory.  Oh, the temptations of what is seemingly out of reach. And then it all fades as quickly as it came. And then I dwell. I have nearly come to accept that I won’t be heading towards the career in some area of law in which I had always hoped for myself. It had been my goal since I was a young girl. I had started with a law course, at community college when I was 15. I just always thought I’d get back to it after raising our girls. They were worth it. Completely worth it, no regrets. Of course, I’ve wondered what our lives would have been like without the girls and I know it would have been empty. Two babies by 20 years of age. 12 months and 4 days apart. Double diapers, double trouble, double sticky hands in the cookie jars and sometimes the toilet, too. To even try and say I’ve never peeked back in time and pondered the difference woudn’t be fair. I have. And I can say this with absolute certainty, I wouldn’t have changed it for the world. I talk with them about me. I try to help them feel how I feel now. This could have all been so much worse, I have told them. I could be so much worse. Words have slipped from their lips murmering, no mom, it couldn’t be. Then when I lay down at night, and am stuck in that state of never ending thought of why’s and what if’s, I ask myself, really? I could be worse? And I know the answer, yes, as compared to many, It could be said I am fortunate, one supposes. And then wham! No it can’t be. It can’t be because it’s living death to my girls. Atleast in death, it’s over.

My little girls of 11 and 12 (at the time) have truely suffered in a way, I cannot give back to them. Not of death, not of physical abuse, but of family.  They lost me at too young of age. The years I should have been in healthy mind and body while teaching them, leading them, providing an emotionally secure environment, providing insight into their tomorrows, letting them know that each day is a gift in it’s own right, however stressed, showing them that petty things rarely matter, and that those things that do matter take precedence over all else, that we must accept the consequences for our own actions, and sometimes those of others, even when it may never be undone, or our good name restored, and how our actions become our character, that our character becomes who we are and who other people perceive us to be, that we do not get to continually make mistakes, but are allowed a small few to learn by, otherwise eventually we will become a menace to our surroundings and that others will not be happy in our presence, to always hold our heads high, even in the times of hardship and struggles, and that they are good girls, they are beautiful girls, that they can do nothing but shine. My girls shine. They shine to me, they just do not see it because I have not shown them enough, I fear.

Please do not misunderstand me, I have taught and stressed, many times, all the above mentioned. It was not as needed, though. It was not in increments as they grew through those years. The teach and need to know parts of the process were greatly altered. The 6 months on crutches and in wheel chair, with the 8.5 months of physical therapy 3 times a week stole over an entire years worth of valuable time. That was the beginning of their teenage years. I was exhausted after each therapy session. All I remember from that period of time, that which sticks out in my mind the most is that I sacrificed my 4th child to the pretense that I would be healed, that our lives would be restored, and all would become the past. Just the past, a slight memory would exist over time. A memory that it was just a broken foot, and that is all it was. That is all it should have been.

But noooooooooooooooo, instead a memory of a woman who had only turned 32, 3 months to the day before. And coming to believe more and more that her 30’s would be blown all to hell. Gone. Nothing. These 30’s were suppose to be the best years of my life. The girls old enough to care for their brother(s) if we wanted to go out to dinner alone, or to a bar together, to dance.  Have I mentioned how I loved to dance?  How I’ve always loved it, how I’d dance at home in the livingroom, or outside in the rain.  On the footstool and tables with my daughters since they had learned to walk and continuing out of the blue just because it made us happy to do so.  God, those memories are precious.

My Kurtis, who was only 3 in 2001 did not know really what was going on. All he knew is mom got hurt, mom got surgery, mom got physical therapy, mom got more and more pain meds and mom never got better. I am not entirely sure how this has completely affected Kurtis. But I can tell you this, he took care of me while I was still non weight bearing and in the cast. My husband had to keep working, my girls had to go to school, and we had no one to help us. Kurtis and I managed. He would fetch our food, be it the makings for a sandwich, bring the bread, the meat, the condiments, etc.  And I with a plate on my lap would make it for us. We did this daily until he no longer had to bear the burden of feeding me. I know deep down he bore no burden, he did not know burden existed, but I knew. And know still. Later while in walking boot, and while still on crutches, moving from non weight bearing to being allowed to try as able, He was a bit more than encouragement by then. He was my crutch of crutches. All the times, I couldn’t go anymore, he would tell me, one more momma, one more. My leg was weak, my calf couldn’t have been any more round than a womans wrist and forearm, and still I found it in me to take that “one more” step, as he chanted, commanded and hoped for, as he knew could be done.  His faith in those months was truely what it took and the will of both of us combined because no other support existed. Not when it was just the two of us. I can vividly remember the day I took my very first new step. He pushed me outside in the wheelchair, right outside the door, in view of many neighbors. I stood up from the chair on my left leg, I tried to control those dreaded crutches, and then I was up. His eyes lit up, they were so bright and blue. The walking boot had a rocker on the bottom, a bit at a time, I began to shift a little weight to my right foot, but was still predominately using my upper body, I had to. It was Kurtis, who stood beside cheering, motivating me with his daddy’s charm, getting those watching to clap at the occomplishments and shared efforts, too. A few times a day, each day, everyday, we would add another try and another step, until I could walk. Then we started all over and without the crutches. It took weeks, but my boy never gave up on me and for that I will be forever grateful.

Kurtis never lacked going from extra money to none. An adjustment he didn’t have to make for a couple of more years.  Whereas the girls went from enough to very little, Kurtis went from none and that’s all it’s been for him. He has been for the most part happy with the smaller things.  A dollar for an icecream or little new toy, and he’s pretty much fine. Only now is that beginning to change. The girls never adjusted to it.  How could they?  Erykah would try to be sympathetic to the little 5 dollar allowance, she “might” recieve. Kharisma, never!  Why should she, she had everything, and she remembered it!

What Kurtis lacked and lost more than both of the girls beyond the age of 3 was playing in his moms arms, being tossed in the air, carried, lifted, and anything else that even comes close to the types of affection as would be felt in a moms embrace.  That is sad!  Heartbreaking sad. Instead, I would lay him across my lap on his belly or his back, or rest his head against my thigh and hope that it might comfort him enough that he may never realized what he missed. He does though, I know he does. Children feel loss. The times he tried to jump into my arms from a standing postion as I stepped across the livingroom to the restroom and had to push him down. I have never skated with him, ran with him, skipped with him, I have never done anything little with him like that. He has never even been to a Fair or similar with me. I could never walk it with this affliction of mine. Two summers ago, my uncle treated us to a Water Park. The men took the younger boys to the rides, the girls went off on their own, and me?  I sunbathed by myself at a kiddie pool. I couldn’t even go on the water rides. The water alone could snap my foot apart on impact into the water. Trust me, I know. That is how fragile it is.

Kurtis only recently began to ask for more. He’s 9 now. I have not lost any hope or belief that Kurtis will fail in life. Not at all at this point. I will not. He is the only one that may still have a chance at a college education. His SAT scores were far above average, and beyond advanced in some areas. He has become much bolder in his behavior, talking back, pushing his limits, some trouble, but I’m not ready to believe he too has fallen emotionally injured as his sisters have been.  Maybe it lies dormant and I cannot see because I don’t want to.

Erik, my husband and my master. We have been together over 20 years, married nearly 19. Our bond to one another is strong. Our love and friendship to eachother has kept us strong. He has been my transportation to every single appointment I’ve ever had these last 5 years, he has done much of the shopping, picked up the prescriptions, loaded and unloaded, wheelchair, crutches and such, carries all the groceries, but a small bag or two that won’t add strain to me while carrying myself, he’s the kids’ transportation to appointments, he’s just the “everything” to all of us, he’s the provider and head of household. He has hardly complained, and when he has, it was not because of doing these things for me or the family. It was because he was exhausted. Graveyard work shift and all this is hell on him. These last 5 years I have driven myself approximately 15 times.  All within 5 miles of home, except for 2 emergencies I had to drive a bit farther and my husband was with me both times.  My judgement is impaired, I lack the ability to control that foot properly to break safely. I cannot subject others to the possibility of a collision by doing so. The times I have driven, I did so safely, knowing before hand if it can be attempted or not. All I’ve sought from the beginning was for the day to come for this all to be over. Instead, everyday it seems as if it’s only just begun.

Any decent quality of life has been gone for quite sometime. Over 5.5 years to be exact. I minus the first year because it is only fair that I take into account one needs to heal from a surgery of any kind before expecting to be fully recovered.  Um, that time came and went like a bolt of lightening. I am bitter and then I’m not. And then I am again. I have asked myself, who’s to blame. I’ve never been the type of girl who’s blamed others for mishaps, accidents, unfortunate situations. I had always thought and stood firm on that people should not blame others for the misfortunes of life. Pick it all back up and start again, I would say. Go forward and be proud.  There’s only one way up from down and it’s up. It use to be one of my favorite sayings of inspiration. I’ve told myself time and time again, you must endure, to not let it get the last bit of sanity existing inside you. I must endure. I’ve asked God to not let it take what I was and make me a hard person. From tears to anger, tears to anger. No one really understands. Not any that have not lived it or similar before. They try, I truely believe they try, but they cannot feel it.  My husband has been understanding, but there are still those times it seems it isn’t enough. My husband wants his wife to walk with him. We still walk hand in hand, but since I walk very little, we have become hand in hand very little. It’s always that last few seconds of not being able to stand anymore and him wanting me to that causes words between us. Am always the one to throw the first blow and I do not mean to do it. Maybe in a sense I expect him to know exactly when I’m at my limit and when he doesn’t, I that hurts too.

Imagine walking across semi hot (A fading barbeque, yet not quite that crimson red.) coals for 3 seconds.  Heading for a breakdown?. Now imagine 5 to 20. I’m talking seconds. Imagine waking in the middle of the night to find that someone left a kitchen cubbord hung wide open and you slam your head right into it….   Now imagine that fire you feel, that initial immediate intense pain, the burn, the sting,  now imagine the sudden rage.  Now the fire and ice.  You’ve just experienced a hint of the pain and emotion I feel when me or someone like me is flirting with the edge of a possible no return. That 5 seconds across the fire is a pain level of about 8 for me.  More seconds equals more pain.  See how quickly pain escalates and how sometimes it is without warning, even to yourself? I pray for 5’s, though I hold at a steady 7. I do not recall ever being below a 5.  Remember a 5 is a 10 for some, and a 0 for others.

Before all this, I had considered myself to be of pretty high tolerance, I guess not.  Moderate would have described me best, perhaps. I don’t know.

I use to love to dance.  I can’t anymore. I try, it’s good home PT. I get so frustrated from not being able to dance a whole song. I become even more furious because I’m unable to keep up on my feet/legs because the right has never even come close to being adequately repaired and the left just can’t take the overwhelming stress from attempting to compensate for the right.  It is moments like these, of many scenarios, that I’m not sure what I want more, to hurt those who have hurt me, or sock my legs again so that hurts, instead. It has always become the latter to prevail.

I began writing this 10 months ago and so even more changes have occurred.

It is important to me that I finally reveal my heart, my hurt, my fears, the humiliation, embarrassment, my frustrations, and of the repetetive feelings that all this has been nothing more than a long term bout of hypochondria. I need to begin a process of closure of some kind. How I don’t know, as it isn’t even plausible to believe something can be closed without a lid.  Common sense really. And too if I don’t continue to express myself now and keep writing here, however long it becomes, It will have become left unsaid. I have nothing to lose, not even the paper it is printed on.

It will have become my one and only regret.

Respectfully,

Twinkle V.

June 30, 2006

Represented by a Sacramento area Law Firm

(who’s name will be disclosed eventually)

Workers Compensation

Insurer- Royal and SunAlliance (who had denied every single proceedure requested until the recent pain blocks which were finally authorized by expedited court hearing)

Update- My daughters baby has since been born and is now 5 months old. I wouldn’t trade him for a pain free tomorrow.

I just finished a series of 3 Lumbar Sympathetic Nerve Blocks, scheduled 1 week apart. A 2 year and 4 month wait for the authorizations.

Implant of a Spinal Cord Stimulator will be determined next month. August 2006.

September 2006- Having been recommended as a candidate for the Spinal Cord Stimulator, I am currently awaiting authorization from the wc insurence adjuster so that her doctor can proceed to schedule the appointment for the implant.


To date there is no known cure for RSD(S)/CRPS.


–To Be Continued


————————————————————————————–


Sun, 2 Jul 2006 18:24:34 -0700 (PDT)  (Sent in an E-mail)

Dear Kharisma, I guess Shelbie shared this with me because it really touched her and I think that she may know I am in a similar situation. The facts are not exact of course, we all have our own unique story, however it all comes down to the same kind of pain and self doubt and feelings of hopelessness, anger , frustration, etc. Our lack of patience with our doctors, therapists, insurance people and others can never equal the lack we feel in ourselves after awhile. The guilt that comes with the way chronic pain alters our personalities and behavior is so evident in your mothers’ account. We cannot hope to make up for the frustration we vent on those closest to us who actually suffer a lot of feelings of anger, frustration and hopelessness themselves at times. We start to wonder, as your Mom expressed, whether we might just be great big hypochondriacs, because it doesn’t seem possible that this pain and all it’s residual effects could be real sometimes. But…I guarantee you that it is. You begin to doubt your own inner strength and I have even at times, found myself trying to bargain with God (which He does not do by the wayImage) and offering the impossible for just an hour without any pain at all. To someone who has never experienced unrelenting intractable pain there is NO WAY to explain what this is like, day in and day out, all your waking hours and from the moment you open your eyes almost. Sometimes, when I first wake up, it’s as if my mind hasn’t caught up yet and I think the pain is actually gone, but as soon as I’m fully awake and the nerves are too, I’m right back in a living Hell again for one more long, exhausting day. The very best I can hope for is that I remember to be kind, to be grateful to be alive, to know that others are in worse shape, though I must say that as time goes on it is harder and harder to console myself with that thought. And the things your Mom says about her memory and her mental incapacity’s are so familiar. I have lost the ability to distinguish what I may have lost due to my illness and disease or what may be caused by the large doses of narcotic pain meds I must take to be able to function even at this seriously compromised level. We both suffer are biggest pain in walking and on the weight bearing bones and joints. Sometimes I think that there is nothing worse than the inability to walk, even though I know that statement is a bit self-centered. When she expressed that she misses walking with your Dad and holding hands…that now …because there is so little walking, consequently, little hand holding…I cried. I know her heart…..I’m so sorry. These feelings are more destructive than all the pain itself, because you see the time flying by and you know that of all the things that you could get back if you could just be made whole again, time is not one of them. All the days and months that turn into years cannot ever be retrieved and that is more frustrating than anything. You watch your children growing and you grandchildren being born, and your husband having to go on without you as his partner. Don’t get me wrong, I’m sure that your parents have a deep love for each other like Carl and I do, but when a woman who feels as your Mom does, that her husband is her master and the head of her domain, like I feel about mine, it is very difficult to watch him have to struggle and tire out taking over the woman’s responsibilities on top of working outside the home every day. And your Dad is probably like my Carl in that even though he might spout off out of sheer frustration sometimes, he would probably never intentionally hurt your mother by telling her that this makes his life hell too. I can hardly remember when we just had a whole day of love and laughter. I guess I’m writing this to you Kharisma, and you were probably starting to wonder “what the—-“Image, because I want you to know that I know how she feels. She may not think that anyone really knows, but I do. Please tell her this, and I don’t know if she has spiritual beliefs but I’ll keep her in my prayers from now on. She must have some relationship with a “higher power” because it is the only way to stay sane in this mess. I also wanted you to know, and maybe you already do (please forgive me if I’m sounding presumptuous) but I can read in your Mom’s words that her family is her world and that she is very proud of her girls, but it seems she’s afraid she’s failed you in some way or let you down. Always remember that love takes many forms, and even a love that is preoccupied because of pain or depression is still a huge blessing in this world where genuine love and compassion are so lacking. Just keep reassuring each other of your understanding and support and THAT love will prevail over all else. I have come to believe that at some point we must realize that our lives have changed dramatically and that to hope to go back to our previous life is futile. But you have probably heard that when “one door closes another opens”, well I think we have to accept that and move on. That is soooo easy to say but hard to do. Yet I must believe that as long as I am here in this life, there are still lessons to learn and some to teach to others. I have often wondered why I feel like I MUST help these girls reach adulthood, not that I have anything to give but love, but maybe that’s the whole point. Maybe that’s what they need most and I can still do that. Whether they accept it or not, well maybe that’s part of their life story. I do know that eventually we will all answer for what we have given and what we have taken away from this life. It must be so, for if I did not believe this I could not exist. It’s what keeps me wanting to stay alive on days when I think I just can’t take it anymore, when I wonder if I’m making any worthwhile contribution to those that I love or would they be better without the burden of helping care for me. Yet God assures us that every life has a purpose, so I always, so far, decide to hang around and see what my purpose could possibly be, and then along came my sweet Shelbie…my wounded and abandoned little” tuff nut”…………. it’s what makes it worth while, to try raising another teenagerImageImageImage, especially one who insists on referring to me as “hey dog…”.

Thank your Mom for reminding me, I’ve been a little low lately. I’ll be OK now. I can see in her story that you all are the reason she will keep on fighting to get better and as I know for myself, that day may be far off, but that’s why we have hope. You all are her “HOPE”. Remind her for me that “when life gives you ——- lemons, sometimes the only thing you CAN do is make ——- lemonade”, and drink it with gusto!!! She should certainly send that letter to those responsible. It is powerful. They may not care, but they can’t say they didn’t know how this has affected her whole life. I think it is important to remind them sometimes.

Love to your family, and a special hug to your Mom,
Lisa

What is RSDS/CRPS?

      What is RSDS/CRPS?

  • What is reflex sympathetic dystrophy/complex regional pain syndrome?

    RSD/CRPS is a chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. The syndrome is a nerve disorder that occurs at the site of an injury (most often to the arms or legs). It occurs especially after injuries from high-velocity impacts such as those from bullets or shrapnel. However, it may occur without apparent injury.

    The condition called “causalgia” was first documented in the 19th century by physicians concerned about pain that Civil War veterans continued to experience after their wounds had healed. Doctors often called it “hot pain,” after its primary symptom. Over the years, the syndrome was classified as one of the peripheral neuropathies, and later, as a chronic pain syndrome. Currently, there are two types of CRPS that are differentiated-type I and type II. Both types share the same basic set of symptoms, but have one distinct difference: type I (previously referred to as RSD) describes cases in which there is no nerve injury, while type II (formerly called causalgia) refers to cases in which a distinct nerve injury, for example from a gunshot wound, has occurred

    What are the symptoms of RSD/CRPS?

    The symptoms of RSD/CRPS usually occur near the site of an injury, either major or minor, and include: burning pain, muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or painful movement, and changes in the nails and skin. One visible sign of RSD/CRPS near the site of injury is warm, shiny red skin that later becomes cool and bluish.

    The pain that patients report is out of proportion to the severity of the injury and gets worse, rather than better, over time. It is frequently characterized as a burning, aching, searing pain, which may initially be localized to the site of injury or the area covered by an injured nerve but spreads over time, often involving an entire limb. It can sometimes even involve the opposite extremity. Pain is continuous and may be heightened by emotional stress. Moving or touching the limb is often intolerable. Eventually the joints become stiff from disuse, and the skin, muscles, and bone atrophy.

    The symptoms of RSD/CRPS vary in severity and duration. However, there are usually three stages associated with RSD/CRPS, and each stage is marked by progressive changes in the skin, nails, muscles, joints, ligaments, and bones. Stage one lasts from 1 to 3 months and is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur.

    In stage two, which lasts from 3 to 6 months, the pain intensifies. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.

    As the patient reaches stage three, changes in the skin and bones become irreversible, and pain becomes unyielding and may now involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening is more dispersed.

    What causes RSD/CRPS?

    RSD/CRPS was originally thought to be the result of malfunctioning nerves of the sympathetic nervous system-the part of the nervous system responsible, for example, for controlling the diameter of blood vessels. This idea has been called into question and the mechanism remains controversial.

    Since RSD/CRPS is most often caused by trauma to the extremities, other conditions that can bring about RSD/CRPS include sprains, fractures, surgery, damage to blood vessels or nerves, and cerebral lesions. The disorder is unique in that it simultaneously affects the nerves, skin, muscles, blood vessels, and bones.

    Who gets it?

    RSD/CRPS can strike at any age, but has usually been more common between the ages of 40 and 60. Recent reports show that the number of RSD/CRPS cases among adolescents and young adults is increasing. It affects both men and women, but is most frequently seen in women.

    Investigators estimate that two to five percent of those with peripheral nerve injury and 12 to 21 percent of those with hemiplegia (paralysis of one side of the body) will suffer from RSD/CRPS.

    How is RSD/CRPS diagnosed?

    RSD/CRPS is often misdiagnosed because it remains poorly understood. Diagnosis is complicated by the fact that some patients improve without treatment. A delay in diagnosis and/or treatment for this syndrome can result in severe physical and psychological problems. Early recognition and prompt treatment provide the greatest opportunity for recovery.

    RSD/CRPS is diagnosed primarily through observation of the symptoms. However, some physicians use thermography — a diagnostic technique for measuring blood flow by determining the variations in heat emitted from the body — to detect changes in body temperature that are common in RSD/CRPS. A color-coded “thermogram” of a person in pain often shows an altered blood supply to the painful area, appearing as a different shade (abnormally pale or violet) than the surrounding areas of the corresponding part on the other side of the body. An abnormal thermogram in a patient who complains of pain may lead to a diagnosis of RSD/CRPS. X-rays may also show changes in the bone.

    What is the prognosis?

    Good progress can be made in treating RSD/CRPS if treatment is begun early, ideally within 3 months of the first symptoms. Early treatment often results in remission. If treatment is delayed, however, the disorder can quickly spread to the entire limb and changes in bone and muscle may become irreversible. In 50 percent of RSD/CRPS cases, pain persists longer than 6 months and sometimes for years.

    What is the treatment?

    Physical therapy is the mainstay of therapy. Physicians use a variety of drugs to treat RSD/CRPS, including corticosteroids, vasodilators, and alpha- or beta-adrenergic-blocking compounds. Elevation of the extremity may be helpful. Injection of a local anesthetic, such as lidocaine, is sometimes used. Injections are repeated as needed. TENS (transcutaneous electrical stimulation), a procedure in which brief pulses of electricity are applied to nerve endings under the skin, has helped some patients in relieving chronic pain.

    In some cases, surgical or chemical sympathectomy-interruption of the affected portion of the sympathetic nervous system-has been used to relieve pain. Surgical sympathectomy involves cutting the nerve or nerves, destroying the pain almost instantly. But surgery is controversial and may also destroy other sensations.

    Are there any other disorders like RSD/CRPS?

    RSD/CRPS has characteristics similar to those of other disorders, such as shoulder-hand syndrome, which sometimes occurs after a heart attack and is marked by pain and stiffness in the arm and shoulder; Sudeck’s syndrome, which is prevalent in older people and in women and is characterized by bone changes and muscular atrophy, but is not always associated with trauma; and Steinbrocker’s syndrome, which affects both sexes but is slightly more prevalent in women, and includes such symptoms as gradual stiffness, discomfort, and weakness in the shoulder and hand.

    What research is being done?

    The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), supports and conducts research on the brain and central nervous system. Some studies are conducted at the Institute’s own laboratories and clinics located in Bethesda, Maryland, on the NIH campus, while others are funded through grants to major medical institutions across the country. NINDS-supported scientists are studying new approaches to treat RSD/CRPS and intervene more aggressively after traumatic injury to lower the patient’s chances of developing the disorder. Other studies to overcome chronic pain syndromes are discussed in the pamphlet ” Pain: Hope Through Research,” published by the NINDS.

    Is help available?

    The unrelenting pain from RSD/CRPS has caused many patients much physical and emotional misery. Family, friends, coworkers, and, regrettably, physicians themselves, may regard the patient as a complainer, thereby increasing the patient’s distress. To meet the needs of individuals with RSD/CRPS and other conditions causing chronic pain, the following voluntary health agencies promote research, provide information, and may offer advice on coping. For information, write or call:

  • RSDS Association
    P.O. Box 502
    Milford, Connecticut 06460
    (203) 877-3790
    www.rsds.org

    ForGrace.org
    PO Box 1724
    Studio City, CA 91614
    (818) 760-7635
    American Chronic Pain Association
    P.O. Box 850
    Rocklin, California 95677
    (916) 632-0922
    www.theacpa.org

    National Chronic Pain Outreach Association, Inc.
    P.O. Box 274
    Millboro, Virginia 24460
    (540) 862-9437

    National Foundation for the Treatment of Pain
    1330 Skyline Drive, #21
    Monterey, CA 93940
    831-655-8812
    www.paincare.org

    For information on other neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:

    BRAIN
    P.O. Box 5801
    Bethesda, Maryland 20824
    301-496-5751
    800-352-9424
    www.ninds.nih.gov

    Resources

    www.rsdadvisor.com

    RSD Association

    Clinical Studies

    National Institute of Neurlogical Disorders and Strokes

    A Compilation of RSD(S)/CRPS Links and Related Resources

    The following is a list of resources I’ve compiled through research. My passion is to promote awareness and understanding in regards to RSD(S)/CRPS, Reflex Sympathetic Dystrophy Syndrome, also known as, Complex Regional Pain Syndrome and other illnesses and information directly or indirectly associated to it. Some links may be repetitive. There is still no cure to date.

                                                                                  ~twinkleEKV/ellajC

    American Pain Foundation
    Log in Page
    http://painaid.painfoundation.org/login.php?page=

    United States Department of Human Services
    http://www.hhs.gov/

    Clinical Trials.gov
    http://clinicaltrials.gov/

    RSDS – CRPS News
    http://rsds-crps-news.blogspot.com/

    Psychiatric Times- RSD
    http://www.psychiatrictimes.com/showArticle.jhtml?articleID=189500108

    NIH Pain Consortium
    http://painconsortium.nih.gov/pain_index.html

    National Institute of Arthritis and Muscularskeletal and Skin Diseases
    What is Fibromyalgia?
    http://www.niams.nih.gov/hi/topics/fibromyalgia/fffibro.htm

    Coalition of professional and voluntary organizations concerned with the programs of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
    http://www.niams.nih.gov/hi/coalition/resources.htm

    Reports
    Congressional Justifications
    http://www.niams.nih.gov/ne/reports/congree_rep/cj2001/significitems.html

    WorkCompCentral
    http://www.workcompcentral.com

    Workers Compensation Action Network
    http://www.fixworkerscompnow.org/

    Lawyers.com
    Workers Comp
    http://www.lawyers.com/lawyers/C~P~California~Employment~Workers%20Compensation~LDS~City.html

    Research Legal Topics
    http://www.lawyers.com/legal_topics/browse_by_topic/index.php?site=&eid=

    Support and Chat Groups

    In His Hands with RSD
    http://groups.msn.com/InHishandswithRSDandChronicPain

    Pain Pals
    http://www.angelfire.com/me2/rsdpainpals/links.html

    Yahoo RSD Groups
    http://groups.yahoo.com/search?query=RSD

    Pumpsters (Intrathecal pumps)
    http://health.groups.yahoo.com/group/pumpsters/

    I Village RSD Chat Community
    http://messageboards.ivillage.com/iv-bhrsd/


     

    Social Security and Workers Compensation

    National Organization of Social Security Claimant’s Representative (NOSSCR)
    http://www.nosscr.org/

    AFL/CIO Web Site
    http://www.aflcio.org/

    All 50 States
    http://www.comp.state.nc.us/ncic/pages/all50.htm

    Injured Workers of America
    http://www.injuredworkers4change.org/injured.htm

    Job Accommodation Network
    http://janweb.icdi.wvu.edu/

    Workers Comp Rx
    http://www.workerscomprx.com/main.asp

    Pain

    Central Pain Syndrome Alliance
    http://www.centralpain.com/

    Pain and Health
    http://www.painandhealth.org/

    Rehabilitation Facilities
    http://www.carf.org/

    Office of Rare Diseases
    http://rarediseases.info.nih.gov/

    National Foundation for the Treatment of Pain
    http://www.paincare.org/

    NINDS
    http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm

    NIH Pain Consortium
    http://painconsortium.nih.gov/

    NORD
    http://www.rarediseases.org/

    Partners Against Pain
    http://www.partnersagainstpain.com/

    Pain.com
    http://www.pain.com/
    Health

    NEADS (Dogs for Deaf and Disabled Americans)
    http://www.neads.org/index.shtml

    CareGiver.com
    http://www.caregiver.com/

    RSD Org (Directory)
    http://www.rsd.org/index.asp

    Sympathetic Dystrophy (Directory)
    http://www.tunu.com/sear/r/e/Reflex_Sympathetic_Dystrophy.html
    Associations

    American Acadamy of Physical Medicine and Rehabilitation
    http://www.aapmr.org/

    American Acadamy of Pain Management
    http://www.aapainmanage.org/

    ACPA (American Chronic Pain Association)
    http://www.theacpa.org/

    American Pain Foundation
    http://www.painfoundation.org/

    APS (American Pain Society)
    http://www.ampainsoc.org/

    IASP (International Association for the Study of Pain)
    http://www.ampainsoc.org/
    Medical Societies

    ASA (American Society of Anesthesiologists)
    http://www.asahq.org/

    Diplomats of the American Board of Pain Medicine
    http://www.abpm.org/diplomates/index.html

    PainEDU
    http://www.painedu.org/

    National Hyperbaric Oxygen Therapy
    http://www.rsdtherapy.com/?gclid=CO6R4o-Ip4UCFQvOJAodNShW0A

    Informative Links

    RSD Advisor- http://www.rsdadvisor.com

    Clinical Research Studies- http://clinicalstudies.info.nih.gov/detail/A_2000-NR-0200.html

    Tame the Pain- http://www.medtronic.com/neuro/ttp/index.html?c=overture_ppc&kw=rsd

    American RSDHope- http://www.rsdhope.org/

    Aware RSD- http://www.aware-rsd.org/

    Neurology Channel- http://www.neurologychannel.com/rsd/

    Reflex Sympathetic Dystrophy Syndrome America- http://www.rsds.org/index2.html

    Microsurgeon.org- http://www.microsurgeon.org/rsd.htm

    AboutRSD- http://www.aboutrsd.com/

    Pain.com- http://www.pain.com/

    RSD Online- http://www.rsd-online.org/

    Reflex Sympathetic Dystrophy Association of California- http://www.rsdsa-ca.org/

    Treatment, Education and research- http://www.rsdrx.com/index.html

    RSD Friends- www.rsdfriends.org

    RSD Info- http://www.rsdinfo.com

    RSD Awareness- www.rsdawareness.com

    RSD Escape- www.rsdescape.com

    Sympathetic.org- http://www.sympathetic.org/

    RSD Foundation- www.rsdfoundation.org

    Podiatry Channel- http://www.podiatrychannel.com/rsd/

    RSD Care- www.rsdcare.com

    For Grace.org- www.forgrace.org

    California RSD Lawyers- http://www.california-rsd-lawyers.com/
    National Institutes of Health
    http://www.nih.gov/

    Division of Thoracic & Foregut Surgery
    http://www.stronghealth.com/services/surgical/thoracic/RSDS.cfm

    Sudeck`s dystrophy
    http://www.sudeck-dystrophy.com/

    Pain Defeat
    http://www.paindefeat.com/wiki/PDFT/RSDS