A Simpli Splendiferous Adversaria

June 10, 2013

Thank You Reader’s!

Filed under: Philosophy (Natural or otherwise) — twinklev @ 3:01 pm

Thank you to all the reader’s of this blog for I have not updated it in several years. I am uncertain if I ever wrote about my situation here. Part of me doesn’t want to, I want to leave it as what I was still hopeful for back then.

I will have to think about it. I have another hidden blog (obviously not hidden that well after all) and a very active one.

I’ll share a bit about myself that may or may not be here. I am going to have to go back to my own “About” and either leave it or edit it. I haven’t looked yet.

It seems my last post was in 2007 when I posted the video Everybody Hurts by the Corr’s. (Originally REM).

I suppose by the links I have included you have an idea of who I am. Maybe!

I am very diversified. I do not discriminate! If discrimination ever plays a role for me it is due to an action on a person’s part not color, religion, political views, physical or mental status or gender preference or orientation.

I am against all things RFID related! Radio Frequency Identification (RFID)

Yep, I believe in the Bible and Revelations which tells us not to take any mark and I keep telling myself I will not at any cost. But I suppose you also have to be faced with it in the right here, right now.

Enough of that!

I work Independently as a Chronic Pain Advocate and Spokesperson, Support Group Owner/Founder, Website Owner/Founder for an incurable disease as well as for a well-known Non Profit Organization as their California State Ambassador.

Some may already know this.

One of my passions is writing. I may merge 2 of my blogs here once I figure out where I have what and what I’ve already shared. It’s going to take me awhile I know.

Too much to endure right now.

Thank you so much again!

Always be as well as you can be.


February 22, 2007

Filed under: Philosophy (Natural or otherwise) — twinklev @ 11:24 am

The Corrs – Everybody Hurts

Have always loved this song by REM. Absolutely love this remake! Hope you do, too!

When you think you’ve had too much of this life… Hang on! Everybody hurts, sometimes… Sometimes, everybody
cries. Everybody hurts, sometimes…
… So hold on..
hold on….
Hold on!!! (Everybody hurts, sometimes. Sometimes, everybody cries) ‘Cuz no you’re not alone…
… Just hold on.
No, no, no… you’re not alone.


October 21, 2006

Emotional Seperation: RSD in Flight by twinklev

Emotional Seperation: RSD in Flight by twinklev

Written Sept 6, 2005 to Present and Ongoing

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.

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,

BDSM and D/s vs Gor by ellaJ

To some in BDSM, the term Gorean refers specifically to a subset of the BDSM lifestyle. The level at which adherents follow the books vary, but the Gorean lifestyle is differentiated from BDSM by the lack of a safe word between master and slave. Goreans are generally disdained by the mainstream of BDSM practitioners, because the “Gorean” philosophy rejects the ideas of “Safe, Sane and Consensual”/”Risk Aware Consensual Kink” as unnecessary because pain, extreme physical or sexual play is not considered part of being Gorean.

The main principle of Gorean society is “be what you truly are,” followed by “treat people as what their actions and behavior portray them to be.” It is true, actions do speak louder than words. In regards to slaves, this means that one should only be a slave or consider to be, if one is truly, in one’s heart, belly, being, soul, a slave. It also means that one should not behave in a slave-like fashion, unless she is prepared to become one.

Philosophy is a discipline or field of study involving the investigation, analysis, and development of ideas at a general, abstract, or fundamental level. It is the discipline in search for a general understanding of values and reality by chiefly speculative rather than observational means. The term covers a very wide range of approaches, and is also used to refer to a worldview, to a perspective on an issue, or to the positions argued for. Lifestyle is who and what we are and how we live it.

The Gorean lifestyle is concerned with a person living as closely to the philosophies, ideals, and principles without the pretentious counterfeit performances by the ever growing r/p (role playing) populace. The adaption of “natural order” and the relations between men and women take the form of a deeper, intense, master and slave dynamic.

1. Ref, http://www.disinfo.com/archive/pages/dossier/id432/pg1/
2. Ref, http://www.dreamstrike.com/gorintro5.html
3. Ref, http://en.wikipedia.org/wiki/Gorean
4. Ref, http://en.wikipedia.org/wiki/BDSM


BDSM and D/s VS Gor

Gorean Axiom- Lifestyle and Philosophies
by ella J
Formerly ella GC

A D/s (Dominant/submissive) relationship has always been built on explicit negotiation of limits and desires, and the power in the relationships is not simply seized or assumed, it is exchanged. All aspects of the relationship only go as far as the sub wishes, and the explicit rules and regulations of D/s can often evolve into a profound implicit understanding of needs, desires and personality. Equality is recognized. Many sexual submissives are dominant everyday in various aspects of their lives. And many dominates will never voice a command outside of the role. While equality for both men and woman might exist in the D/s lifestyle, it will never exisit in the gorean one.

A specific distinction between goreans and BDSM followers is that the gorean does not seek the sadism and masochism as part of their lifestyle. The gorean master doesn’t punish his slave for the sexual gratifications of doing so. He does not wish to inflict pain upon his slave. He cherishes her, often times loves her. The gorean slave is disciplined so that she will think twice before repeating the same infraction again. While BDSM leans toward erotic stimulation, the gorean union is of sensual and sexual bonding. The kajira surrenders with her heart, the fire in her belly, she yields to his will, she wishes for his command. She complies and obeys.

BDSM is a sexual preference When a Gorean owns a woman, he owns her thoughts and her ideas, all of her. He lures all that is inside her, out. The Gorean Master wants more then a scene or session. He wants more than kinks and thrills. He wants to own, utterly. Stimulating, erotic, passionate sex, to any degree, is a tool. The infliction of pain, suffereing and emotional distress are not.

A kajira is taught at the hands of dominant men to serve and to do so with perfection. Not too far into her training a kajira recognizes that serving in any capacity is a privilege, be it fetching his drink or remaining silently at his feet as he converses with other’s. Service is a privilege, not a right. A kajira has no rights, least of all the right to receive the gift of service. A gorean slave is property. Property that is cherished and cared for. She will obey with absolute, unquestioned and instantaneous obedience. When she does not, she might feel the lash of the punishment whip or the pain in her belly from not being fed. Becoming aware that she has displeased her Master, the disappointment in his eyes builds to a deep intense anguish within her. The very worse punishment of all. A kajira understands that her position is one of servitude. She lacks the liberty to determine her course of actions and is *happy* to relinquish this control to the men of Gor. She is acquiescent and complaisant. A kajira has no honor for a kajira can own nothing, unless it is by his gift or approval. What she does have is a sense of honor and in every way serves to uphold and further the honor of he who chooses to own her. A kajira learns to embrace her own feminine nature. Under the hands and boot of a dominant Gorean Master she comes to understand and cherish the fact that she is a sexual beast. She is open and unrestrained in all things as it pleases the Masters. She is not shy or bashful unless allowed to be so. There is no emotion or thought, or piece of her soul that she should ever be so bold as to believe she may withhold from him. Every breath the girl inhales are those of submission and surrender. She is by her nature, when mastered, compliant and yielding, a pleasing creature to own. This does not mean that she is witless or nescient.

The kajira has fire and spirit and is all things that are feminine and beautiful.

The Master’s push the slave emotionally when needed, challenging them with Dominance to be as pleasing as possible. They coax them to harness their own natural beauty and to embrace the wild fire that lives within the slave, slut, wench’s belly. The Gorean Master rules with a firm hand, giving a steady and consistent diet of Domination as well as reward and punishment. He does not tolerate the slightest of errors and punishes in a manner befitting the crime. Too, he lets his girls know when they have been pleasing by rewarding them and thereby, instituting equal balance. He is in control of himself, confident and arrogant. As a Gorean man he is interested in not only owning the physical forms of his property but also of owning the girl herself. He seeks to own the whole woman, her body, mind and spirit in all of her depth, complexity and individualism.

Embracing natural order as the rightful state of being among the sexes. Women beneath the hand of man. A woman under Master’s hand.

A gorean lifestyle evolves when a female submits her will to a gorean man. She is making her choice. She begs his collar and if he accepts, it becomes the last choice she will ever make. At that moment, she relinquishes all of her rights. Any returned or allowed would be by his choosing. The Gorean Master is harsh, but seldom cruel. Her vow is to exist for his pleasure. His is to care for, lead, and nurture her. Her choices now his. Her thoughts his, her pleasure his. Her physical, mental and emotional well being rests in his hands. Only a Gorean man can spawn a gorean kajira.

This is what has come to be known as Consensual Slavery.

©2005-2006 twinklev Unauthorized duplication and distribution is prohibited. May be used with permission. Contact: Jaguarous@Yahoo

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Gorean Theorem by ellaJ

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Gorean Theorem by ella J (Formerly ella GC)
In the old days it was natural for a man to provide and lead and for a woman to care for the home, the children and his needs.  She was to be pleasing in all that she was.  A woman in biblical times was to submit to her husband.  She vowed a promise to *obey him. This vow alone forces one to be sub-servient even if one wishes not to be.  He owns her. In order for a person to obey absolutely and without question they must be the property of another, if they do not consider themselves to be so.  Defiance brought punishment.  Only more recent did this begin to disolve and *cherish came to replace it.  A Gorean lifestyle and Society would then fit into this natural process of living.  In the natural order men are dominant and woman are submissive.  Gorean belief is that men, over millions of years of evolution, have been selected for dominance and women for submission.  Anything else, even if it is a societal norm (as in Western cultures on Earth) is a perversion of nature and a lie. Since Goreans abhor dishonesty, they react very harshly to men who do not seek to exercise their dominance, or at least avoid outright submission.  It cannot be overemphasized that a man who voluntarily consented to being enslaved of his own free will would be utterly repugnant to Goreans, free and slave, male and female alike.  Although a woman might own a male slave, she would mock and revile him, being disgusted by his nature.

Dr. Lange, as John Norman wrote about a counter earth that included a portion of these ideals from our world, our earth, the dirt that we walk on as human beings.  This belief having already existed in our nation, not a counter world to earth.  These old days have added truth to the idea that men and woman have a natural process to one another, not necessarily a natural order.  Some woman are in fact stronger and more dominant than men.  In this scenario, it would seem fair to say that this would be the natural order for these people. The debates on this subject become long and overwhelming with many becoming offended, angry or hurt, but it too is open for discussion.  Let us not forget that on the fictitious planet called Gor, a male was Master by birthright, he possessed this status immediately.  To have become enslaved as a male was very degrading.  The idea of feminine men and masculine woman continues to be controversial but by example the gorean idioms leave very little to discuss in the debate of whether or not a slave male (a man serving a woman as slave, submissive or bottom) has a place in gorean society.

Our future as a people depends on men being men, and women being either at the feet of men (as a slave) or at their side (as a free companion).  Free women do have a place in real life Gorean Society.  They can wield great power.  If this were Norman’s Gor, a free woman would be free and remain free only because the men allowed it.   She could also be enslaved or re-enslaved at their will.  Remember too, if this were Gor according to Norman and we as Goreans who believe in the ethos of  these novels would know that the hypothesis of real world lifestyle as switches per se ( from top to bottom and vice versa ) did not exist and still cannot exist in Gor as we know it. If it did then any acclaim would not be of a gorean status, but of dominant to submissive or top to bottom relationship often found in the Bdsm or D/s lifestyles.  It would null and void the total master and total slave union.  A woman was not a free woman sometimes and a slave another.  Her belly might stir mixed emotions, but she could not be called Mistress one moment and sister the next.  If she acted a slave at all then she would become enslaved and be *only a slave, until freed again, if ever.  This is not book Gor, this is a reality Gor of real people excersising philosophies of freedom and slavery legal to our Justice System. 

Please remember that Gorean ideals are not based on sexual gratification as being first and foremost but to the dynamics of *Consensual Slavery.  I do not mean to imply that the Bdsm, non-Gorean M/s and D/s sub-cultures are beneath or above the gorean one, only that there is a place for each individual in our community, that which may fit well for one, may not fit well for another.I imagines gor to be this… There are 3 moons of Gor and to look at them as marbles in the palm of my hand.  To the left is our earth, to the right is the fictional counter earth, and in the center is how it use to be, how it should be, and what is natural to be.  A combination of fantasy and reality containing elements that would not allow us to be enslaved with malice, but allow us to serve men, Our Master’s– with fire burning through the very edges of our flesh and soul.  The ability to discard the inhibitions that reside in the deepest recesses of our minds and instead love so deeply one another that passion becomes all of our today’s and all of our tomorrows. 

With this…  Love, trust, devotion and surrender becomes absolute.

©2006 twinklev  Unauthorized duplication and distribution is prohibited.  
May be used by permission only. Please contact: Jaguarous@Yahoo

Copyright Laws and Regulations 

Oh What a Wicked Web the WEB Weaves!

 Cross-posted from 360.yahoo.com/elllajC -Entry for July 23, 2006

The more I look around, listen, and pay attention to my surroundings and the going ons among it, the more I understand. I understand that men and women are different. As a female, we tend to need just one man to fulfill us. Longing for the one. Craving deep down in our bellies for him, the master of our fantasies and everything we imagine.

A man needs more. It takes much more to fulfill him. He has deeper needs that generally one female will never fulfill. So I watch the interaction of the men and women. The master’s and the sluts. The free men and free women and how they mingle together. I see free women as they attempt over and over to get the attention of a man who stirs her to the point of seeking approval or correction, as long as the attention comes. I see a free woman, from time to time, with heat in their flesh to serve, subservient nature, yet conduct themselves becoming of a free woman. Those free females truly deserve to be recognized for their efforts in retaining their true being and nature while also demonstrating the character of how the uncollared, unowned woman should act.

I watch as some females seek to be at the center of attention, taking away from the female, who may have had the privilage of receiving it, otherwise. Yes, I used the word, privilage, afterall, a man owes the slave nothing. If she did receive his praise or attention, it certainly would be a privilage and not something due her in any sense of the way.

Now back to the men who need more. I am not at all implying that these men are out to fuck each girl he comes into contact with beyond a greet. Not at all, though, I do believe a man who has more than one girl to which he’s close to, has them because each one offers him something unique, a fulfillent that cannot be reached with just one. Why? Because hardly no one woman will ever possess each and every quality that attracts him. Who is the perfect women or slave girl in a man’s fantasies? I can almost imagine. I’d love to say.. oh yeah, I know exactly the kind of wench he dreams of, but well…  I’d hate to be called a liar, or nipped at and confronted with the disapproved assumption that I have no idea how a man thinks, so…  ~smiles.. We won’t go there. ~Sshh

The man, the man, the man…   the master! Hm..   The female…  slave, companion, or significant other to one offline. Lets go on a little ride.. it goes like this.. A man, online frequently, but has a female in the home, offline. A female, online, but has a man or master in the home, offline.  ~lifts fingers to twine a lock of loose spiral around her finger and tugs.

mm, well…   Someone somewhere in either scenario is hurting or pissed off, whether they reveal it or not. Or maybe the person offline has not even a clue of what the other does online. Yep, might even be someones dirty little secret. Yet too, through all the dishonesty, there does actually exist honesty between partners. Why would a man spend hours online with girls, if he had one offline already? Because he’s hungry to have in his presence those slaves who feed him? Nibbles or portions of friendships? Alright since most of us are on the gorean path, perhaps friendship is not a good word, but you know what I mean. Why would a slut spend hours online with other men, when she has one at home? Because she’s hungry to be in the presence of all men who feed her fire? I better not use the word friendship again, I might get my ass beat! Or worse..  called or considered to be un-gorean. Then again, all anyone is ever going to get from me- is me, no matter where I happen to be. And um.. it will never be beneath the fictional Gorean skies.


What in the world would possess a slut to spend countless hours online, when she lives in a commited, devoted, loyal, submissive, passive, sincere, caring, loving, sensual marriage offline, even if it does have it’s ups and downs?

Passion! A complete totality of passion and utter servitude to be all that she is, where ever she is. Makes sense to me. But then again, it would! It’s probably beyond anyone elses wildest or even dullest imaginations.

I see couples online and watch their interactions with one another and others, together, and in eachothers absense.  Does contentment and security exist with it or insecurity and dis-contentment? It hurts to hurt. Pain doesn’t have to be visible, it can exist in many forms from a visible physical scar to an invisible incurable disease and mostly no one will ever see either type because if you look or are seemingly fine, then guess what? You are! Doesn’t everyone have worth? Uh oh, maybe I shouldn’t go there either because a female cannot boast worth. Can she? I know the answer..  and am aware that that worth is dependent on the man himself.

Oh God– what a wicked web the WEB weaves!

Someone will always be hurt, angry, insecure, and lonely. Someone else will always be happy, bouncy, secure, and flourish. Does it matter?



The Promise by twinkleEKV/ellajC

The Promise-  Cross-posted from 360.yahoo.elllajC

So I remember years and years back, we were young, kids, yeah… just kids.
Together though, I was his wife of years, already still. And we sat talking about the future in all that we
dreamed and all that it may have turned out to be. And we looked to eachother with the deepest of love, the deepest of sincerety, the deepest of tomorrows and promised…

We promised one another that no matter how bad it ever might be, or how bad it ever actually became…We would never ever let eachother suffer…  ever! We would honor our word at all cost. Yes, at all cost.

We would except the consequences for our own actions. We would act on our promise and live our remaining days in jail… or be smart enough to beat the system and still honor that promise… 

That time is nearing…

Today, only moments ago, I asked him again…

I begged him to close his eyes and remember his promise to me as I held close to heart my own promise to him..

Would he honor it?

His answer… 

I might be a little selfish..


Only that day when it comes will answer both of us…

Until then…

I know  our love for one another remains as strong as it was then…

but hopefully ends stronger than it began.


                                                                  ~ twinkleEKV/ellajC

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