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 sites and

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


Facing the Storm- Pain and Mental Illness by twinklev

Facing the Storm
Pain and Mental Illness
by TwinkleEKV
Mental Health, a most fascinating area of study, but are all diagnosis’ correct? A diagnosis relies on symptoms, or should I say, for a doctor to give a diagnosis, he must rely on symptoms and underlying factors before making such a determination. Can a doctors determination of said illness be based simply on assumption? How about a pre conceived idea or notion that the symptoms are obvious to a specific illness or disorder? Perhaps you know someone that experiences mood swings, altered behavior, or sudden changes in personality with bouts of highs and lows without notable warnings and you probably never even see it coming. This seems to be a tell tale sign of a widely known and diagnosed disorder and before I mention it, many of you will already know where I’m heading.

Depression is defined as sadness, gloom, dejection. A condition of feeling sad or despondent. In Psychiatry it is defined as a condition of general emotional dejection and withdrawal; sadness greater and more prolonged than that warranted by any objective reason. A disorder characterized by an inability to concentrate, insomnia, loss of appetite, anhedonia, feelings of extreme sadness, guilt, helplessness and hopelessness, and thoughts of death. Also called clinical depression. In Pathology, a low state of vital powers or functional activity.

Mania is defined as excessive excitement or enthusiasm; craze. An excessively intense enthusiasm, interest, or desire. In Psychiatry, manic disorder. A manifestation of bipolar disorder, characterized by profuse and rapidly changing ideas, exaggerated sexuality, gaiety, or irritability, and decreased sleep. Violent abnormal behavior. Insanity. Excitement of psychotic proportions manifested by mental and physical hyperactivity, disorganization of behavior, and elevation of mood; specifically : the manic phase of bipolar disorder. An irrational but irresistible motive for a belief or action. A mood disorder; an affective disorder in which the victim tends to respond excessively and sometimes violently.

Lets take a look at this again. Depression equals low and mania equals high. Common sense would lead us to believe that a “normal” mood would be at the center of both and in studying mental illness and Bipolar disorder, we would be correct. Imagine a pole, any pole, even a telephone pole. At the top is mania, in the middle is an even stabalized mood and at the bottom is depression.

Lets take a peek at hypomania. A mild to moderate level of mania is called hypomania, which generally does not impair a persons daily functioning and includes an enhanced mood and productivity.

A manic depressive is called Bipolar 1, the less severe form of Bipolar 1 is Bipolar 2, who’s characteristics include hypomania, instead of full blown manic episodes and then there is Unipolar, which by definition means that there is a depressive phase only.

Hmm! Wouldn’t that simply be depression? Lets review for a moment.  Bi means two, Uni means 1. Bipolar 1 and 2 move up and down the pole, Unipolar means 1, it stays at the bottom. It’s said that mixed episodes do not exist in Bipolar 2, on the contrary, they do exist. It is but a mixed state of being, fluctuating, deflating and back again.

Have you wondered by chance where I might be going with all this? Let me introduce you to pain.

Pain is defined as physical suffering or distress, as due to injury illness, etc. A distressing sensation in a particular part of the body. Pain and ache usually refer to physical sensations (except heartache); agony and anguish may be physical or mental. Pain suggests a sudden sharp twinge. Agony implies a continuous, excruciating, scarcely endurable pain: in agony from a wound. Anguish suggests not only extreme and long-continued pain, but also a feeling of despair. A pang, twinge, stitch. afflict, torment; trouble, grieve. An unpleasant sensation occurring in varying degrees of severity as a consequence of injury, disease, or emotional disorder. Suffering or distress. A physical discomfort associated with bodily disorder (as disease or injury). A state of physical, emotional, or mental lack of well-being or physical, emotional, or mental uneasiness that ranges from mild discomfort or dull distress to acute often unbearable agony, may be generalized or localized, and is the consequence of being injured or hurt physically or mentally or of some derangement of or lack of equilibrium in the physical or mental functions (as through disease), and that usually produces a reaction of wanting to avoid, escape, or destroy the causative factor and its effects. Basic bodily sensation that is induced by a noxious stimulus, is received by naked nerve endings, is characterized by physical discomfort (as pricking, throbbing, or aching), and typically leads to evasive action. A symptom of some physical hurt or disorder. A somatic sensation of acute discomfort.

Now I’m going to propose a thought for others to think upon. When physical pain developes in a person, at some point emotional distress will take over. This is not an assumption, but fact. I don’t even need to get into information explaining the chemical imbalances that play a part in mental illness. Of course, it’s true. What I want to discuss is that when someone is in pain, acute, severe, mild to extreme, it takes so much energy inside ourselves that mental dilemma’s will develop. This can happen over a short period of time or a longer period of time. It might depend on strength, hope, the will to live, the ability to fight off the discomfort, attitude and a minimal level of stress.  Stress increases pain, pain increases instability, instability creates lack of peace of mind. Thoughts of no longer wanting to live and exist expand and increase, however, there is a difference between suicidal ideation and suicidal intent.

On a good pain day the individual may have their high, creativity, feel happiness, smile and laugh, bounce around in a positive manner, demonstrate self esteem, feel excitement, desire, feel optimistic with the emotion that “no one can hold me back”.  Mania?

On a bad pain day the person may feel hopeless, worthless, no longer have the will to live that they had on their “good pain day”. Lose hope, cry, feel agony, sadness, have no drive to get out of bed because either the physical pain or emotional pain has them beat. It is that the physical and emotional has grabbed them up once again. Depression?

On a so so day, he or she may feel fatigued, but flash a smile, hurt, but want to survive, their mood may be that of feeling “okay” considering what they endure through their day to day lives and hope flows through them. A stabalized mood? The center of that pole!

I am at the belief that pain is misunderstood and since many pain syndromes currently have no cure that many people are mis-diagnosed with a mental illness, namely Bipolar disorder as a means to justify that which cannot be accepted or explained.

I urge you all to think about this, I certainly do.


© 2006 twinklev – Unauthorized duplication is prohibited. May be used by permission and with viewable credit to author.

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.


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,

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