Saturday, May 30, 2009

The Most Important Thing I learned This Week

I have learned quite a bit already in my first 4 days of my rehabilitation program. The most important thing I learned is that my life has been greatly affected by chronic pain. Everything reminded me of pain, in a great sense, I had given up.

Going to the store caused pain, so I stopped going. Being out with my family at all caused pain, so I stopped going anywhere. Walking hurt too bad, so I mostly stopped walking, going to the bathroom would hurt, so I started to hold it as long as I could. Sitting at the computer hurt, so I laid down often. Everything hurt! That's how my life got to this point. I lost any sense of routine, schedules and goals were not always completed on time. If my owner told me to pay the bills they were paid on time. If my son needed help with home work, I helped him, if my daughter needed help, I helped. I only went on for others. Not myself. I put nearly everything that had to do with me, off. I became secluded.

Because my Sympathetic nervous system is damaged, my fight or flight is locked down. It's frozen. A freeze frame. The mis fire of pain recognition signals in my brain, only feels pain. I always feel pain. People with my same illness do also. All of us to a similar extent.

There's nothing I can do to stop it, but I'm learning to get through it and go on.

I have to have a routine. I have to wake at a certain time. Do my Yoga, relaxation and breathing. I have to make daily goals and achieve them.

I cannot tell myself I will try to do this or I will try to accomplish that. I have to tell myself "I will". Saying that "I will try" leaves me open for choice, options and allows me to set myself up for failure or not doing as planned. Telling myself I will leaves no option but to do it. My psyche is being reprogrammed, reconditioned.

I have written my own mantra for meditating.

I was late to program on Wednesday. My pain was so overwhelming the evening of my first day that I was already giving up. I was already telling myself "I can't". I was in tears. I was sobbing when one of the doctors called to ask why I wasn't there. I had no option but to get my ass up and go. Everything was ready. My clothes, my lunch, my homework, but I was hurting and that made me not want to. Just like not wanting to go to the store or anything else. It reminded me of pain.

I am to be there by 8:30 a.m. My doc called at 10:00 a.m. My owner got me there by 10:45 a.m or about. I was to start walking that day as part of my therapy. I suppose that was in the back of my mind and again I knew it would hurt me, so I tried to avoid it as not to hurt more.

I am about 10 days off of 3 medications. Right now it's painful withdrawal symptoms on top of CRPS pain as well as movement I'm not at all use to.

It's hard to be somewhere when you haven't slept also. I hadn't slept Tuesday night. I finally did Wednesday night and Thursday I got 4 hours out of an attempted 9. Last night I told myself I would be up at 7:00 a.m which is the latest I can be up during the week in order to be on time. Since I have to put a schedule to my life, I kept it the same. I got up at 8 a.m. It was so hard. It seems silly in a way maybe that it would be so hard for me, but...
it was and while I missed by goal by an hour, I did make great progress considering my pre program ways.

While I will always physically "feel" pain, it doesn't mean I cannot be happy. It doesn't mean that my future should be a waste, or that my present is too hard to live through. I may think it all is, but it's not.

Being submissive doesn't help me here, being owned hardly matters, him pushing me isn't going to do it. Him being more strict won't make it happen. He can't save me! He can't stop the pain. I HAVE CHANGE ME! I HAVE TO WANT A PRODUCTIVE FUTURE! I HAVE TO WANT TO SERVE BETTER!

This program is showing me how. God knows I've teeter tottered on the edge of bye bye too many times because I don't know how to get through it and move forward. So many times I thought I was. By all the good things I've still accomplished through it all. I wasn't really living, I've been surviving day to day, that's all.

Am making dinner tomorrow. Spaghetti, salad and french bread (no bread for me though).

Today I will be practicing breathing. I have to learn to slow my breathing down. I forgot the name of the machine, but they put a strap around my belly to measure my breaths onto a screen. Biofeedback. I'm always in a hyperventalative state. Jeez. Had no idea. I breathe way too fast. This is something I can change. It will take time, but it CAN be fixed.

I have to listen to a relaxation cd today as well, and do some homework. I have to work on my "Factors". I'll explain more about Factors another time. I had to memorize 10 images in the Memory Master System (MMS) already, now I have to memorize them backwards. This is a pain diversion therapy.

I'm not yet in the "Zone" (remaining in my happy place inside my mind) with a score of 80 or above on my Freeze Frame biofeedback. I can only move forward once I've done so twice. My highest score has been 72 and my lowest 59 I think.

4 more people start the program on Monday.

And I'll be introduced to more PT and calming techniques.

Until next time..

Wednesday, May 27, 2009

2nd day completed at CFRP

It's been a tiring last 2 days. I'm still learning what's expected of me in the program. I'm making goals, changing patterns, adding routine, doing Yoga 3 times a day, doing relaxation for 30 minutes a day, memory mastering, bio feedback and so much more.

Today I did my first bio feedback session. I'm not in the "Zone" yet, but once I am and can retain it, I can move on to the next level. This measures ones heart rate as a person begins to meditate in a sense, beginning with breathing, calming and going to "a happy place" in ones mind and staying there. I'll be able to give more information later once I learn more.

I also did mirror therapy. Some may have heard of mirror box therapy where you trick a damaged limb into thinking it's really there and normal. IT REALLY WORKS. Will talk more about this another time also. Tomorrow is only my 3rd day.

I don't have extra time in the morning and the evening is for my family and to achieve goals. When I set these goals they have to be completed and discussed by the next day.

I have already cut down on 3 total meds. I started on my own a few days ago and told my doctor when I met with him today. I have completely stopped Zanaflex/Tizanadine, Klonopin/Clonazapam and Neurontin.

When I jump into something I tend to jump head first. If I can keep off them is yet to be seen. I'm feeling some withdrawals, but handling it.

Tomorrow I start walking (ugh) and being tortured (bigger UGH)

I'm quite sore already, I think the sitting has been worse than the standing as of yet, but butt hurts bad. My SCS decreases with activity, or increases with opposite activity, so that's tough because it's not continuous stimulation through my legs.

My work book is thick and other than assignments is full of valuable information. I'll be cutting down on caffeine (ouch) and not having any after 5 p.m. I'm limiting myself to 3 cups a day at this time until I can get by with only one cup in the morning to wake up with.

I'll also discuss in further detail later about the sympathetic nervous system (fight or flight).

I may repeat myself here at times, my short term memory is probably not repairable from the high doses of Neurontin, the time I've been on it and pain itself, but who knows, maybe.

I did learn 5 new words today forward and backwards. I'll explain more about this later also. If I get some time this weekend, maybe I'll try then.

After I've completed this program I'll write an entire essay/article/complilation of all of it in hopes that I can teach others or atleast a beneficial read. I will eventually wean away from doing many RSD/CRPS related things that I do now. While it may seem strange, my doctors want me to and I didn't understand why at first because I've been complimented by them all and they give my site out at program etc.

It has nothing to do with having not done well.

More along the lines of having done too well.

I have succeeded and accomplished something really great.. It's time to move forward.

Until next time...

Sunday, May 24, 2009

Tenative Schedule, Thoughts and Things

I start my program in 2 more days and have come up with a tenative schedule to begin with. I'll set the alarm for 6:45 a.m. We would have to be out of the house by 7:50 a.m since I have to be there by 8:30 a.m. I'll have my clothes laid out the night before and either take a bath the night before or a shower first thing in the morning. I'm not sure yet. I should figure it out by trying both during the first week. I know that I will have to keep morning activity and moving about to a minimum since I'll need my energy/legs at the program. I get out at 4:00 p.m, so should be home by 5:00 p.m. Compass is right next to my pain management center and from that office there's a huge window attaching both centers. Anyone in the clinic are able to see into Compass. I'll have my lunch ready the night before, too. Everything ready so that each day starts with little to do before heading out.

I'll have coffee for breakfast, I don't eat in the morning. i may try to get into the habit of doing so, though. Even if it's a bowl of cheerios or an apple or something small. Maybe some toast.

Even though there are places to go for lunch around the center, I would never make walking it, so will be having lunch at the program each day.

In the evening when I get home, I'll spend it with the family out in the living room, make dinner, have dinner with family (this may not begin until the second week) and return to our bedroom around 7:00 p.m. to try to wind down and sleep.

Unfortunately it takes my body longer to rejuvenate, so I need more sleep, when I'm able to sleep that is.

I've already cut my meds down on my own to prepare me for the first week. I've been withdrawing some. Feeling a bit out of it, but it's nothing like when I went through severe withdrawals from Morphine months back. One medication I know won't be cut at all is the Morphine. I'll remain on that. Tizanadine, Neurontin and Klonopin is what's been cut. This should help my mind and my memory, already my pain has increased as a result.

It's one of those things that you're damned if you do and damned if you don't.

When I come to our room at night, I'll check the pain group and respond as needed. I've already spoken to the owner and the senior leader about my absense the next 6 weeks. I'm fine and my position is solid at this time.

I'll be keeping a diary of my participation in the program because even though I'll be there, doing all that is required, I still may forget details, so this will help me remember.

I don't know what the heck to do with my hair. It's become so long that after washing and conditioning it, it takes me 20 minutes to comb out. This is going to drive me coo coo. I may have it fully braided, not necessarily beaded, but that way, it's ready to go for atleast a week at a time. Otherwise will pull it to the left side and twist it (similar to a braid, but 2 parts instead of 3). Since my bangs have grown past my chin I've been twisting or braiding them often to keep them out of my eyes.

I'm not sure as of yet if I will check my email or anything else when on lunch break. My phone has full internet capability and I've never used that feature. I've used yahoo messenger, windows live and aim on it, but have never used it to log into any site. He pays $30 a month for me to have that feature and I don't use it. I do use the email feature though. One email address, a tmoble one, I've never even given out, so it just remains idle. Atleast it's clean from junk.

The man already got his fathers day gift early. A G1. That phone is awesome! I've never been interested in newer or fancier phones, but that one? I can't wait to get it as a hand me down. Right now I have a SideKick which he bought off our daughter for me for $60 when she paid $300. I don't even know how to use most of what's on it. It's good for sexting though. hehe, um, I mean texting. Have never even used the camera on it when on my old phone I often did. Have had it since Christmas time when bubbles came home on leave from the Army.

I'm really going to need the man to keep me doing what I learn in the program after it's completed. It's different when you have a team of doctors/people pushing you, leading you, supporting you and then coming home and possibly dropping all that was learned. Have to incorporate the lessons into everyday life.... forever. Or it won't do much good for the future.

Have been thinking about life after the 6 weeks alot. I'm going to be re conditioned by people, men, other than my own Master. This bothers me.

I'm going to have to learn to trust others that aren't him. Other men touching me, and yet another getting into my mind.
~rubs her temples

Just don't know about that. I'm not confortable spending all but maybe 2 hours a day with people other than my family.

Contrary to popular belief, I'm actually quite shy. I'm playful and outgoing, but I'm not used to being touched by others.

When I went through my meetings to be considered a candidate, I was asked questions by the psychologist I didn't care for. I answered honestly, but I don't want it brought up again. It has nothing to do with this. If it is brought up again, I'm not sure how I'm going to respond, I do know it would begin with a stutter.

My collar in all the 5 years I've gone to the pain clinic has never been acknowledged or questioned openly. My slave bells have. For the first 4 years I went there, i wore bells, then I took them off for a surgery, we moved, and I didn't put them back on because I had 2 other surgeries following quickly after. I have them again. I was honest, I told them what they were.

I do vaguely remember one surgery in which when I was placed under anesthesia I started babbling. lol. ~blushes. Oh yeah, I babbled about that. Ya'll know what that is, dontcha?

It's never been brought up since.

Well I think I've babbled enough...

Until next time...

"If God brings you to it... He will bring you through it"

Wednesday, May 20, 2009

CFRP Start Date- May 26

The first 3 weeks of my 6 week functional restoration program has been authorized. I start next Tuesday, May 26th. My sister's bday is that day, too. We were both born on the 26th. Different months, though. 26 happens to be a number that comes up constantly in my life. Most of us consider our birthdays our lucky number, the number has been both good and not good for me, but one that always appears in most everything I do or am apart of. 2 of my surgeries were on the 26th, I was injured on the 26th, I've had court dates with the same number, just many significant days have been the same.

I am nervous as hell. My Master was contacted to do a first application submission process to work for PG&E. They contacted him based on experience and credibility, which is a really great thing, just don't know how many others have been contacted, too.

My Compass worker did tell me they would assist me with transportation if he is unable to take me to and from each day.

I start at 8:30 a.m and get out at 4:00 p.m each day.

Did I mention I'm nervous as hell?

Tuesday could be the first day of the rest of my life and 6 weeks full of the hardest things I've ever done.

Wear loose clothing means I'm going to be tortured. Tortured for my own good, but still.

I'm a chicken shit. See? ----> bawk bawk!!!

My meds will probably begin to be cut down next week as well. I agreed to all this when I begged to be considered as a candidate for this program. I always said I was willing to try anything, any trial, etc etc. I am.

After so many years,

I'm just not sure if I should cry now or later...

Until next time...

Sunday, May 17, 2009

Feeling Overwhelmed

We went out of town on Wednesday and returned Friday evening. Even fun took it's toll on me. By the time we returned I couldn't sleep even though I tried and tried. Finally the next day I fell off to rest, waking this evening. Prior to us leaving my sister made it to a safe house for 3 days before getting on a plane back to Georgia. She got her job back already and will work from there to get her children returned. She had 3 broken ribs from husband, someone wanted to pimp her out, and another had nearly raped her. But she got to that safe house and made it back home. We had sent her some cash and mom and dad sent her a plane ticket.

The stress from it was tough, so we just bailed out of town.

I still feel overwhelmed though not exactly sure from what.. maybe everything. Maybe about the future, maybe yesterday, the present... all of it wrapped up into one, seperated into categories... pieces and parts.

It feels like some one has a tight hold on my spine and is twisting. Probably too early to have done all that sitting I did. 9 more days is 8 weeks post op. I have to charge my butt and am putting it off. Some thing I've never done before is leave home without my stim. I didn't realize it until half way to our destination. He was going to turn around and come back home, but I told him I could handle it and so we just continued on. I thought I could.

My spelling has become terrible to the point of sometimes needing a spell checker. My sentence structure is screwed. And it embarrasses me even if no one realizes it. I'm just not thrilled with things.

I am keeping up with leading the group well, but I'm not even sure how long I'll remain apart of it as I may need to leave it as a moderator eventually. It's hard to choose oneself over others. It's just not my nature.

Maybe some whiskey will do me good. lol. Throw back a few like a bar slut. Been there, done that. Few regrets, if any.

Maybe I should make an avatar and play in a chat room. Not like I'd be doing anything but playing, duh. But alas, nothing like that amuses me enough to try or stay.

Maybe I should be a phone sex op... oh wait, I already am. A year or so now. hahaha. It just doesn't rock my ship, float my boat, or wet the panties I don't have on. Haven't come across anyone that good.

I'm probably the one filing her nails while on the phone with you. ~ah well

The goal is to get you off, ya know. Never failed at that one.

Until next time...

Be good... or be good at it.

Wednesday, May 13, 2009

Simpli Splendiferous Moments

I made this video years ago after first finding out that ... well, I just wanted my family to know how much they meant to me and mean to me. It's on YouTube. My account there is twinkleEKV.

Hope you like it...


Until next time...

P.S Bia isn't my blood, instead a girl I raised for many years.

Monday, May 11, 2009

Susan Boyle- An Inspiration

Listening to this women's voice is like Wow! An inspiration in many aspects of life. One at her audition no one took her seriously. Never judge a book by it's cover. Two, just because a female isn't what most men would consider attractive, doesn't mean anything this time, she's making more money than you do. Three, her voice takes you into yourself and all your dreams come to light.

It doesn't matter if we're cute, if we've got a body a man would.. die for? Okay maybe a man wouldn't die for a hot body, but some would not hesitate to lay down with it.

They call her an under-dog. Why? Most likely because she doesn't possess the so called typical look. She's everyone that isn't absolutely perfect. A voice you'd never expect to hear.

How can that not be an inspiration when you hear her sing for the first time and you think... oh my fucking... you know. You're left in awe. Like no way. But it's quite the opposite, it's yes way. And you can relate...

Just because.

If you can relate you know why.. I don't need to go there. If you can't relate, I don't believe you because at one point in your life... or another... you have.

Susan is an inspiration to so many people who thought they'd never be anything. Thought their dreams could never come true, who thought they were just another someone.. anyone, all of us...

And who took a chance.

And made it.

Until next time...

Mom's Day & Lil Sis

Mom's day was both nice and stressful yesterday. Nice in that my Master and children made it good for me, stressful in that my brother in law wouldn't stop calling me. My sister ran away from him the night before. He wanted to know where she was, if she was coming here, if she'd be back for their court date on Tuesday, was she getting on the plane on the 15th to Georgia. And all the same questions and talk over and over and over.

I laid on in the sun yesterday, next to the kiddie lagoon pool, I tried to relax inside the water. Cool water helps my nerve damage, cold water worsens it. That water had been waiting for me since the day before. I laid out that day too for a little while as the man did repairs on the home.

I was gifted sterling silver slave bells. Yay! I've worn bells on my left ankle for years, with periods in between that I hadn't. I had indian leather wrapped around it before he put my new bells on. I got another set of EZ combs, one silver this time. I love silver. Am not a gold girl, unless it's white gold. I got bath beads, soaps, a rose. Was happy.

I came in from the pool about 2:30 p.m. Was asleep by 4p.m, other than the phone that kept ringing. Finally I asked my son to shut down the ringer. I really couldn't take it.
Woke up at 3:30 a.m this morning with 6 voice mails. Today being not a weekend anymore, I can't talk for free. We're on a minute plan.

I love my sister, but we're very different. Our lifestyles outside of any lifestyle is different.
She's my only blood sister. She'll be 38 this month. Can't say too much other than she's relapsed again. It's her husbands fault as well, they beat the crap out of eachother on a regular basis.

It's the kids I'm frantic over. They are all in foster care currently. In the last 2 years we have taken in 2 of my neices. I am just not well enough to do it again. And how do I choose one of 5 children to take? While the other 4 says how come auntie didn't take me?
Sad, very sad. I didn't need this now.

Not when I'm being given a chance to have a life again. A life specifically meant for my Master and his own kids.

I've been pushing myself to start some things before starting the Compass program. Being out in the living room again more, and outside the last couple of days. But I'm in so early and back to sleep. Tomorrow is my monthly appointment at Pain Management. Not sure yet if my meds will begin to be decreased at that time or not yet.

I don't like being involved in family squabbles, I don't like being put on the spot. But when backed into a situation, I'll do what I have to. And I did. Of course everyone that knows me even semi well knows that....... I'll never tell. No matter how many times the phone rings, I'm mailed, or I'm pressured.

The picture I added is of me and my lil sis. (Shuddup people, my legs haven't always been that spread with my boobie's popping out, ... okay, maybe)

Until next time..

Thursday, May 07, 2009

Going Back and Moving Forward

I've been feeling overly vulnerable. I feel weak to admit that I think I'm afraid of the change about to come. Crossing over from what lifes been for me to new opportunities. Hanging on to faith and hope. Pretending that I'm well enough to survive, but also knowing it's really hard to live. It's hard to hang on. Everyone tells me I'm so strong, my strength gives them strength and I'm glad it does. I really am. That's what I want is for others to have strength and survive pain, but I'm really not that strong. Even when I show my own pain, I'm still the strong one.

I remember back in 1991, when my dad was diagnosed with inoperable lung cancer. My dad and mom were managing a motel on the Esplanade in Chico CA. One day my dads leg gave out on him, he was taken to the hospital, my brother-in-law at the time and my mom tried to carry him in because only one leg was working, he was admitted, by that evening the other leg was paralyzed, by the next morning he was paralyzed from the waist down. They tattooed him to begin radiation, but then it was determined radiated would not make a difference. They gave him only days to live.

I was only 22. I listened as family members offered to take him home. He declined. I did also, I begged this man that raised me, molded me, to let me take him home and care for him.

My Master told him he would not be any burden at all. The nurse came in to change dads bedding, I had to step back as the curtain was closed. I listened and cried my eyes out quitely as my Dad told my husband to take care of me, he praised me, saying that of his 5 children, I was the only one that really got it, really understood it. He was talking about nature, he was talking about life itself. My husband promised that he would. I remember my dad saying... "you better". And I thought how would he know? He was dying. How would he know I would be taken care of. How...

My husband was not the man originally chosen for me. My husband had the guts to stand up as a man so young and take me as his own. He took me from two men, one was my father.

That's how my dad knew in that hospital bed 5 years after my husband took me that he was a man of his word. He is still that same man of his word.

When the curtain was reopened, I tried to hold back the tears. I didn't let another drop. I always held my pain inside regardless what kind. My dad told me yes.. he would come home with me. He told me there was no place he'd rather be in his last days. Oh god how I wanted to cry, instead I smiled.

He was transported by ambulance from Chico CA to my husbands home in West Sac. Hospice had already came in and set up a hospital bed, a latrine, a hoist so dad could use his arms to pull himself up to a sitting position. I fed him, I changed his diapers, the bed sores were so bad, finally dad suspended any shame, as I had to clean his bottom which was so raw as I wiped gently his skin would fall off onto the cloth.

My husband let the home be an open door, for any family to come and go as needed to visit dad.

The hospice nurse would come to change his bolus line. He could disperse morphine to himself by pushing a button and be able to have a booster as needed. He stopped eating.
I would give him popsicles. His tongue was raw with sores. My mom lived with us also. She helped, but I was caring for the both of them. For my little sister who's 2.5 years younger.
I remember how they took Xanax right and left.

But I was the strong one.

I watched his stomach constantly as I sat in the kitchen at my writing table. I had a solid view to the living room, I was never far away. I would fall asleep there, awake there.

The night before he died, he pushed my husband and I to go out. I think he tried to pass on while we were away. He kept dozing off the days prior and awaking to saying things like Cy can't believe any of this, Cy is short for his own dad who passed on a year prior. Do I believe there is a light and the possibility of seeing passed loved ones prior to ones own passing? Yes, I do. I've seen it. Listened to it. Some might say family was just on his mind. I would say differently.

When I walked up to his bedside right before going out... he said to me "you look beautiful, melody". I'm not Melody, my mom is. I think he was seeing me as her years prior. I got very drunk at the bar that night, my husband was playing dice against the bartender and winning and I drank the winning drinks. I tried to let go. I was hurting too.

I checked dad upon returning, mom was asleep beside him on the couch. We went to bed. My husband left for work in the early A.M. I got up to check dad again. He was sleeping.

Soon after, peanut (erykah) came in, pulling on me, she was only 2, I woke up and put her back in their room, button (kharisma) was awake too. I started to go back to our room. My heart sunk, I turned back down the hall and back to dad.

His hands were gripping the side of the bed, I had the bars up so he wouldn't fall out of bed. His stomach wasn't moving. I froze for a moment. I knew. I remember holding my breath, I whispered something in his ear (yes I remember what it was) I pulled his hands undone from the bed posts. The grip was so tight. I crossed his arms around his chest, I was laying him to rest. I was accused of killing him by his mother and sister. Perhaps others thought the same... but..

He was a no code. He commanded me that if he started to pass to let him go. This was the man that raised me. The master of all that was his. I remember telling him daddy, I can't do it. I can't not call 911, I can't not save you. When he said to me, "do I have to tell you again", I said no and I promised.

I promised.

And I let him go.

I woke mom up, when she looked me in the eyes she knew. She tried to shake him awake, when the coroner got there, she was in the bed laying next to him. I called my husband.
The home became chaotic. My husband took over, his own dad came. They did something for me a week prior. They made funeral arrangements. I loved my father in law. He was a good man. They contacted veterans affairs and the VFW. My dad had a military funeral with a 21 gun salute. All this for me. And my mom too.

I left acting and modeling school to take care of my dad. I did later return and graduate with an agent. I had to give it up because I had to take care of my mom.

My father in law passed away 10 months later and my mother in law a year after.

I did go on to become poster girl at a local 50's diner and do their commerical. I was always a valuabe asset at work. The two same jobs competed for me back and forth for years. I worked for Eppies Restaurant 4 times and Hueys Diner 3. For a period of time both jobs at the same time. From a regular employee to assistant and General Manager. I went to the top at Hueys. I couldn't go any higher. I'm proud of that. I did all that by the time I was 25. I took care of the man, the children, the home and still had time for a social life.

One day I called home from work to tell him I would be home in a half hour, I needed to stop at the store on the way home. Well.. I stopped at the bar, we were both well known there. Live music was playing, I danced maybe 3 minutes, I slammed a drink from a man I knew well and strictly platonic. I left the bar, went to the store across the street and went right home. When I got home, I was a little late. Not much at all. Well.. my Master checked the register receipt from the store. Busted!

But I never knew that 7 years later it would all come crashing down.

For 8 years it has been nearly nothing but doctors, surgeries, seclusion. I did go to Vocational Rehab in 2005, took a leave for a surgery, returned, completed my pre requisite classes for my major and left because my body kept deteriorating. It became to hard to sit or stand. It just all became so overwhelming. I began to home school. Between the constant pain and medications, my mind is not what it was. Growing up in the MGM program (Mentally Gifted Minds) didn't do me any good anymore. I had began to turn all my focus on RSD/CRPS research by 2004. By 2005, I had a website up and was in communication with organizations of same. I kept researching, looking for clinical trials.
Because Workers Compensation denied treatment other than pain management and medications for so long by the time I got it... it was too late. An irreversable stage.

I suppose I've pretended in a sense that it's incurable. I can go on without that in my head. I have other diagnosis' that I don't even think about. If I don't then I can push the symptoms away. If it's not in mind then I don't have to worry about it. When I have spoken of it... some people assume pity... they couldn't be more wrong.

And then I become a group leader. An acheivement, yes. I've yet to speak with the Senior Leader who's on vacation at the time to let him know I either have to back down as leader or commit to only a half hour a day and on week ends a hour a day. I think I can get all that need to be done..done , in that amount of time.

My team of doctors are really taking over now. I wish I had this when I begged for it 5 years ago. I'm not ashamed to say that I went to a Psychologist and a Psychiatrist and in my intake paperwork I specifically listed that I needed to learn to cope with physical pain.
Instead of helping me they tossed yet another diagnosis on me and gave me Depakote at 2,500mgs a day and Wellbutrin at 400mgs a day.
Without going into further details.. after a few visits over a period of time, I never returned. And quit those meds cold turkey. To give some a time line, I was a member of GCI. I left the meds and GCI behind at the same time.

I became absorbed in promoting pain related websites, advertising... and seemingly endless research.

A program finally came along to help people like me get back to some type of normalcy.
To live some type of decent and fullfilling life. My foots already in the door, I've yet to begin the program itself, as of now, I've gone through the meetings to get there.

I think I'm afraid of change now. At the same time I'm excited. To have a life again outside of the home, even in it, but being able to do things? I can't let that pass me by.

I want to be a success story.

I use to be a perfectionist, I can't have that anymore and I'm not quite sure how to fail. Being secluded and home bound prevents me from failing. I just am.

I never missed work. There were periods of times when I was in Management that I went 4 months without a single day off. A few half days, but not a day off. They were severely short handed and me... it was always so hard to say no. Being a natural submissive can sometimes put one in positions they can't get out of and it did.

I keep thinking about school, I have 3 courses left for my diploma. Courses that years back would have been easy for me, maybe with some difficult parts, but I could have finished this on time years ago. Adobe Indesign an amazing publishing program, Adobe Photoshop and Adobe Illustrator. It's not just running the progam and using what you need. Heck, I've used these programs, but not to the extent needed for a diploma. Making Master templates, Book designs, custom illustrations. Ugh... it's just harder for me now. It just is. I was hand coding html 12 years ago. Hand coding all of it. I only learned to used a template a few years ago and it drove me nuts. Now it's easy to "use" a template, but not create a master one. Making a book to where the pages turn, not click to the next. This is what I have to do and so much more to graduate. I made a webpage with Microsoft Word. Most people only use it to write with. There's so much more to these programs that's what's on the surface.

I've done so much in my life in during the gloomiest of days.. it scares to me to think about when it's going to run out.

I think of my dad and what happened to his legs and I think of me... and I can feel it.
I tend to believe some of us are here to walk the shoes of everyone. I've walked many.

Our house hold is both black and white, I'm not talking about theories or philosophy, I'm speaking in the literal term. I am not shamed. I would feel shamed for the person who didn't like it. While some may pity me for being open, I would pity them for being closed.

Of course there are a few things I've probably never mentioned, but they surely aren't secrets. Actually I've probably mentioned everything at some point or other over the years. In articles, essays, forums, etc.


It's hard to move forward when you've forgotten how to...

Until next time...

Tuesday, May 05, 2009


Haven't written in a few days and have had a lot on my mind. For one, I just can't seem to shake the pain that invades my body everyday. The last 2 days have been rough. It seems like it's just one flare-up right into the next. My knees feel twisted, my calf is constantly on fire, meds hardly help, so I end up putting myself to sleep with Tylenol PM just so that I won't feel as much pain in my sleep. And hardly any until I awake for some reason.

I started treating my face with a series of lotions and my face is smooth and soft again. Even lines that started to appear are gone. Almost like a glow a woman gets when she's pregnant. I'm not pregnant though. Nope, nope, nope. That's a done deal.

Today I meet with the team of doctors at Compass to determine a plan of rehabilitation for me. Rehabilitation isn't really the right word, I can't think of the word the assistant said to me on the phone, but it's setting up a plan of action to help me achieve some goals either way. Obviously I have been cleared as a candidate for this program.

One I know they're going to help me try to wear shoes again. I haven't wore any aside from hard rains for 8 years and I don't often go out in the rain, only if I have an appointment to go to. We're going to start turning my stim (SCS) off at night, I can't quite recall what else, but today I will learn what we're going to do for sure. While I'll more than likely be sharing with others what I learn as I go in this program, later, I'll be compiling a paper of teaching.

I've been keeping busy Leading the pain group and doing well.

I've been thinking about God and the bigger picture. Receiving at least a dozen of private emails a day asking me to pray for them in their darkest hours of pain. I always do. I've been called an inspiration so many times in open forum and privately. How can this not make me feel good? It does. It always does.

There's a Neurotropin study in Clinical Trial and still recruiting patients for CRPS type 2. Unfortunately the study is too far away for me to particape in.

Something came up in the group that really got me thinking.. One person said they believed all things happen for a reason, something I've thought also, then another person said if they believed that things happen for a reason they'd have to also believe they did something so bad as to have this illness placed upon them. The girl ended the sentence with.. I've never done anything so bad to deserve this.

That really got me thinking... I even found it to be true in many ways. It made me think of myself and my past, growing up, adulthood etc.

I too have never done anything to deserve this. I've always been a helping hand, a listener, a warm compassionate, passionate, always giving, not caring to receive, a life of service of one kind or other.

It reminded me in a way of when bad things happen to good people.

Until next time...

Friday, May 01, 2009


This was sent to me by someone I've become closer to over time. Someone who's husband became involved to find this for me, people who could be considered as strangers from a distant in some small ways, but who have reached out with compassion, care and friendship. I can't see this friendship as anything but growing.

I tend to believe that many of us are meant to be in each others lives. Meant to cross paths for the better good. A few for the lesser good. Tests maybe.

This inspired me to the point tears fell. It happened to be sent while I was feeling terrible pain. It was received when my state of being and physical pain was overwhelming.

Within a few minutes of reading my pain began to subside. Whether or not others find this to be true... it is. There can be several reasons for it if one wants to consider that the reading itself had nothing to do with the decrease. At the very least it brought a sense of peace and tranquility within me and that alone could be the contributor of the relief. Had these passages and prayer not been available I truly believe that my pain would not have decreased at that time. I had not yet taken any pain medication. I had not been awake long. I was feeling detached, like I was bouncing in and out of myself. I contributed that to the possibility that I did not take my Cymbalta yesterday, or... during my sleep I did not wake to take my Morphine. Withdraws come quickly with these meds. It's why it's important to take as prescribed and on time. The pain itself is different.

I'd like to share what was sent to me...

"It is important that we approach God with integrity and in attitude of humility. But because we fear making a negative confession, we sometimes cross the line of honesty into the line of denial and delusion. Let's be honest. God already knows what we are feeling. He can handle our anger, complaints, and disappointments. He understands us. He is aware of our human frailties (Ps. 103:14) and can be touched with the feelings of our infirmities (Heb. 4:15)"

"Sometimes when you are in teh midst of discouragement, it is difficult to remember that you have ever known any Scripture. I admonish you to read this prayer aloud until you recognize the reality of God's Word in your spirit, soul, and body. Remember, God is watching over His Word to perform it. (Jer. 1:12 AMP) He will perfect that which concerns you. (Ps 138:8)"


"Lord, I do not understand why You have allowed this trouble to assail me. It was after I began to follow You in obedience that this trouble was manifested in my life. I have exhausted all my possibilities for changing my situation and circumstances and have found that I am powerless to change them. I believe; help me overcome my unbelief. All things are not possible with man, but all things are possible with You. I humble myself before You, and You will lift me up.

I have a great High Priest Who has gone through the heavens; Jesus, Your Son. And I hold firmly to the faith I profess. My High Priest is able to sympathize with my weaknesses. He was tempted in every way, just as I am -- yet was without sin. I approach Your throne of grace with confidence, so that I may receive mercy and find grace to help me in my time of need.

In the face of discouragement, disappointment, and anger, I choose to believe that Your word to Moses is Your word to me. You are mighty to deliver. Because of Your mighty hand, You will drive out the forces that have set themselves up against me. You are the Lord, the Promise-Keeper, the Almighty One. You appeared to Abraham, to Isaac, and to Jacob, and established Your covenant with them.

Father, I believe that You have heard my groaning, my cries. I will live to see Your promises of deliverance fulfilled in my life. You have not forgotten one word of Your promise; You are a Covenant-Keeper.

It is You Who will bring me out from under the yoke of bondage and free me from being a slave to RSD. You have redeemed me with an outstretched arm and with mighty acts of judgement. You have taken me as your own, and You are my God. You are a father to me. You have delivered me from the past that has held me in bondage and translated me into the Kingdom of love, peace, joy, and righteousness. I will no longer settle for the pain of the past. Where sin abounds, grace does much more abound.

Father, what You have promised, I will go and possess, in the name of Jesus. I am willing to take the chance, to take the risk, to get back into the good fight of faith. It is with patient endurance and steady and active persistence that I run the race, the appointed course that is set before me. I rebuke the spirit of fear, for I am established in righteousness. Oppression and destruction shall not come near me. Behold, they may gather together and stir up strife, but it is not from You, Father. Whoever stirs up strife against me shall fall and surrender to me. I am more than a conqueror through Him Who loves me.

In His name I pray, amen."


And in his name I do pray.. Amen

Until next time..