Monday, December 28, 2009
One thread in particular I originally posted questions to a girl and tries to offer insight in a sincere manner. Later, I couldn't help but laugh with others. After 50+ pages it's like the song that never ends.
Another thread I offered knowledge about ice and walking boots. Got tore up on that one and ended up defending self back. Won't get into too many details other than one wouldn't have offered inaccurate information in the first place. If I didn't know I wouldn't have said so, ironically a health/injury post suddenly turn into..."I know you don't like that I know the slavery...." by the person who came at me with passive-aggressive remarks. Where that came from have no idea since it had absolutely nothing to do with the topic at hand.
Aside from that the dozen + cmails I received suggested I not speak to that person at all.
For the sake of the moment... I did just that.
So I wished her a Merry Christmas and left it at that. ~smiles
Being that it was Christmas time our group slowed down enough to read up and participate elsewhere. I've also tried to catch up on a few blogs.
I have a hard time squeezing enough time in the day to get to each on any kind of regular basis and for this I apologize. Sometimes bi-weekly at best.
I need to come up with more marketing, advertising and promotion techniques for the newer group that was handed to me. Still a small group. It was created some time ago, but when there's no one to oversee them, members often go to groups or forums that continue to stay active. So I understand it's demise prior to me taking it over. It could take an entire year at this point. Because it involves children I have to be more subtle and protect anonymity. Of course this is done in the other groups if necessary, but I have other peoples kids in my hands. I will take extra precautions. Additionally write so that they understand meaning. I need to set aside words above 10 year olds understanding.
There aren't many groups of the same out there. Even in doing a google/etc search my group comes up first...
I published another girl a couple of weeks ago and gave her her own web page on my site. I'll assist her in exposing her writings and link to other sites and so forth. I was happy to hear that she included it on a college application. These are RSD related essays and articles.
We had a really good Christmas. Presents and food. Everyone was happy.
Colored my hair back to bottle natural and streaked it with fuchsia. Can't see the fuchsia unless in the sun or light then wowies. I trimmed it a few days prior. 2 inches or about.
I see my PMD later this afternoon and am not sure if I'm staying for the Monday evening Phase 2 as of yet.
Happy New Year!
Until next time...
Saturday, December 12, 2009
He's been deemed severely ADHC by the Connor scales which 3 teachers and the principal filled out. I've seen changed in our son this last year, but I honestly believe that too many people are being given diagnosis' just to add meaning to problems. In our sons earlier school grades he was quite smart, his grades and SATS above average.
My son just can't sit still, he's bored easily, unlike some kids he takes extra initiative to answer questions (a few of his teachers praised him and us for this) the others found it disrespectful. When an adult is negative to him or tries to scold him, he will lash back out. He's very dominant. He won't stand down especially when he is right.
"course I've looked up all the symptoms and he has them all. It's just that I believe kids are affected by lifes circumstances. Heck, adults are affected by same and lash out.
Kurt was 3 when I was injured. He's gone through much and lost much. I believe that people possess inner strength to over come most all things. I've been teaching him deep breathing, things that I've learned for my own illnesses to learn how to be calm during the worse of it.
Needless to say since we've received that phone call, I've been... I dunno..
Only know our son is everything to me and I don't see how someone can force us to medicate him. I would do anything including medication to help him, but I'm not sure that's the right way to go.
We lost our health insurance nearly a year ago and the man has been refusing medi cal and similar since. We have never applied for things like this. But now, he say's for his sons sake, we have no choice. He's say's he's been helpless to help me all these years and I assure him it's okay because there's nothing he can do. Keeping me is helping me. He does have a chance to help our son and so last evening we opted to find out how to apply for health assistance. See if it was the man and I, we would not ask for assistance, we raised our daughters up and now need to do what we need to for our son or this will get even more out of control.
I'm just going to keep smiling, and smiling, and when I'm sad.. look at him, our son, grand son daughter's and smile again...
Because when they see me smile, they don't see my pain, and they smile...
I go back into surgery in the next 6 months.. it's all this crap that remains in our sons mind and heart, I know it.
The man and son exchange words often and it's because there's 2 strong dominants under the same roof, strong alpha males and everyone knows put to alpha's together, one of them will usually back down or defer.. these two don't.
Our son knows more about Gorean ideals and gorean living more than most 30 years old. It's been his up bringing and when it comes to taking charge, he's right on top of it.
Surprisingly it's the male teachers that have little to no problem with him except one from time to time and it's the female's that do. We've tried to tell him that once labeled the bad kid, often he will not be given another chance even when he's doing good. We've tested this and we were right.
There were days when he did well in class and still one of those females would find something, anything to put him down for..
I realize it wasn't quite nice to tell his teacher to "Be silent, woman" or "stop yelling at me, woman", but I also realize there was lots more he could have said. I really didn't think it was all that bad. At least he didn't say.. Be silent, slut! lol
Other females like counselor's, passerby's in the stores, or else where, adore him. He holds doors open for elderly, is compassionate to those with my own illness and even others. He cares.
Kurt joined 2 support groups with me at MDJ and was eager to do so. The ADHD group has 467 members, but the ADHD-Teens only 42 and no leader.. I bypassed the application form and notified the owner of the entire site to ask if he would give me a chance in leading this kids.
Being that I'm already a Group Leader there in the RSD Forum and second in charge of 5 leaders, as well as an Advocate, my Master gave me his permission, but warned me to be careful of overload. I told him if it became too overwhelming, I would seek out another leader for the kids and either remain as a back up or step down entirely.
I've been struggling with this in my first group, but the thing is is everyday is overwhelming for me. I have an idea of how to help these kids.. I'm good at things like that. Even in my RSD group, I run games and other things for distraction. Not every thread is technical.
I'm a leader, I'm just not dominant. I defer to the man above me. Even if appointed leader to the ADHD-Teens (as the first and only leader) I would still defer to a man. The owner himself.
So far both are pleased with my work there. I'm allowed to take initiative (that is important to the owner) and I do. I don't wait for someone to give me permission, but I do accept consequences.
Just as a slave, I do not need to be told every moment of the day what is expected of me. I know what is expected of me.
Well phew.. I know I babbled on a lot tonight...
My life has been full of challenges, some extreme, I'll get through this one too...
For my sons sake..
Until next time..
Sunday, November 22, 2009
RSD/CRPS Flare-ups and Flare up protocols
We often talk about Flare-ups, but what does it mean exactly? Some are unaware of the meaning or feeling, others aren't sure how to use the word to describe the hard, fast, usually short term inflated pain. When I say short term I'm meaning the pain you already endure hassuddenly jumped up, spiked, heightened.
The definition of a Flare-up is defined as as sudden outbreak of flame or light: a flare-up of
the embers. An outburst or eruption: a flare-up of anger.
A recurrence or an intensification: a flare-up of rheumatism (RSD/CRPS)
A Medical Dictionary would define it as a sudden outburst or worsening of a disease or an
area on the skin surrounding the primary site of infection (injury) or irritation.
I've altered some of the words to include RSD for better understanding for those unsure of
it's meaning. The precise definitions are located here
Most of us undoubtedly know what a Flare is though there are a few that are unsure of how
to associate the word with the meaning or their pain. I've had a handful of people ask me
what it is and so I wanted to take this time to help them understand the meaning and ways
of possibly easing them.
A young boy may have a flare up, we usually call these growing pains. Those with arthritis
may flare by intense cold. Asthma patients might flare because of allergies.
RSD patients might flare for a number of reasons from light to moderate activity, weather
changes, cooking dinner, playing with their children or grandchildren to nothing at all. It's
important to make every moment count despite the pain or be faced with bitterness, anger
and frustration all our days.
A flare for me is the fire which already burns steadily (7+) on a daily basis to a raging
inferno (10) and isn't limited to a single sensation.
For others it may be a pain level of 2 that springs to a 5 or a 6 that becomes a seemingly
unstoppable 10. These flare-ups might last an hour, can last a week, and some have been
known to last much longer. I am blessed to feel moments of 4/6.
I've been through several flares that was either one very long flare or one rolling right into
another with minimal break in duration or intensity. It becomes hard to tell if it ever ceased
at all until it eases enough that I know I'm through it for the time being.
I've learned to help myself during these times. Duration, frequency and intensity is
something that I have to take control of. We all have to. We truly have to. The tools I use
during these times are called my "Flare-up Protocol". My flare up protocol includes the 3,
The 3, 20's are:
Exercise (ie, Yoga, stretching, walking, if able, light weights, activity, etc)
Modalities (ie, anything that can be placed on the body for pain relief, such as a tens, heat,
Distraction (ie, Memory master system, games, meditation, relaxation, fun, etc.
These can also be considered coping strategies.
My favorite is laughing.
The 3, 20's mean 20 minutes of exercise, 20 minutes using modalities and 20 minutes of
These should be done whether or not one is experiencing a flare, but especially during. And
up to 3 times a day.
While it's easier said than done, the worse thing to do for a flare-up is to do nothing at all.
Bringing us back to the use it or lose it theory which is quite accurate. Doing nothing can
cripple us just as much as the pain itself.
I imagine a few of you might be thinking "You've got to be kidding me?! You want me to
exercise when I'm hurting this bad? You must not understand" Oh but I do, I've said it and
thought it a hundred times over myself.
While some will not want to take this to heart, we have to take responsibility for our own
pain, everyone has to learn to and implement their own Flare-up protocols to get through
these extra overwhelming, overbearing, debilitating flares.
As people we expect our doctors to take our pain away and we become discouraged when
there aren't any answers to satisfy our questions. We become depressed and insecure, yet
We have to remember that RSD/CRPS is an incurable illness. Classified incurable because
there isn't a cure to it. There really isn't anything the doctors can do to fix it. If the injury is
correctable, it probably isn't RSD. Our health care professionals can help us with
medications and procedures, and that's it really... just help us along.
We're usually directed to pain management when our other doctors are at a loss. Pain
management is just that, management. Again, not a cure. An area of practice that helps us
manage our pain, not make it disappear. They are intended to help us live some sort of
fulfilling life when nothing else can be done. Pain management is usually a last resort and the rest is up to us.
We might not like it but we have to take primary responsibility for managing our own pain
because there isn't enough knowledge or medical and scientific certainties out there to do it
Flare ups are apart of having RSD/CRPS or a chronic pain condition. They'll never go away,
we have to learn to accept this. But, with practice, we can better learn to control them.
Do you have a Flare-up protocol? If so, would you share it with us? For those who do not,
it's our hope that through this thread the sharing of idea's and coping strategies become
helpful to one another.
Please feel free to offer your thoughts and comments on the above written as well.
©2009 Twinkle V./rsdcrpsfire
Feel free to link to: http://www.crpsadvisory.co
I'm just glad that pillow helped me or I'd still be in bed now and I'm not. Instead I've been up since 5:45 a.m.
He gave me permission a couple of weeks ago to get my hair cut. (He likes long hair) and my hair is long and covering my scar on my lower back. But.. it's also unhealthy from the meds and the damage that comes from the illness itself, so am thinking a cut may help.
Going to have it long layered. Right now there are no layers other than upfront where bangs use to be and which are now near my shoulders, way past my chin.
I'm not allowed to have more than 2 inches taken off the back length though. I was thankful right away. And since he will be there with me, he can keep an eye on the stylist.
I'm not having it styled there and all that. Just cut. I've had bad experiences in the past with cuts. Tell them 2 inches and they take 6. Oh was he pissed!
I've applied for an advocacy position at MDJ. A seperate position from Leading. Don't have to be one to be the other. (at least I don't think). I didn't over do myself. On the application I said I would put in 5 hours a month. A month! I can do that.
I already do that. I already do all that the job entails.
We've been (okay not me) been chopping wood for days. A man gave us tons of wood, some of it isn't cured yet, maybe next year for those. But he's also letting us go back to get more as needed. And initially we got the van filled twice for two trips.
This is going to help us a lot this winter. Won't have to use the heater. We do have to be careful for burn days though. So on the days we can't burn.. we snuggle up.
Home schooling our son is going okay. There really isn't anything to it, but making sure each of his 6 subjects are completed each Wednesday when he meets with the teacher to turn in and get the following weeks work.
His PE includes chopping wood. lol
Trying to get up the energy to go xmas shopping today. Last years xmas was whoohooo all around, this year much much less, but it's all good.
Gonna have to use the wheels today, but am getting use to it, plus there are times when I don't have to at all anymore.. I can push myself, it's just that doing so knocks me off my ass for a few days after.
Some times have to make it worth it.
Off to do some promoting...
Wishing you all warm holidays to come,
Until next time..
Thursday, November 12, 2009
She came home with a certificate as an IT specialist. The Army is paying for 14 more months of schooling. GI bill, Health insurance for a time being, 2 more years of using the PX, she can continue to honor herself and the Army wearing her ACU's when appropriate, etc. We're really proud of her effort and achievements.
A few days before, on Monday, I was gifted another early present. A baby kitten. He's adorable and we bonded closely right away.
On my actual birthday, the 26th of October, I was in a terrible flare and rested the early part of the day. They made me a spaghetti dinner. Loved it!
I've been busy at MDJ, but we hired 1 co-leader approx. 2 months ago and 2 more approx. 2 weeks ago.
I've managed to pry myself away from our bedroom and am out in the living room much more that I had been the last several years. My laptop hasn't been in our bedroom since our daughters return home. Had already planned on making that change and did that same evening.
When I turn in for the night, I'm no longer near a computer. If I nap, I'm also not near it.
I've been playing Wii with the family and Guitar Band (I'm the singer) It's fun!
I'm still only taking 2 meds from the 7 I was on for many years. I went from 20mgs of Suboxone a day to my current 12. 8mgs in the morning and 4mgs in the evening. 1mg of Suboxone is the equivalent of 25mgs of Morphine. I used to take 30-45 mgs of Morphine a day. Suboxone would be as if I was taking 300 now and when I was taking 20 it would equal 500. eeps! I still get a lot of break-thru pain and some days I still can't budge so I turn to relaxation, breathing and meditation.
So that I didn't have to go back on Zanaflex/Tizanadine (24mgs of muscle relaxer, I was on for 5 years) I opted to try Calcium and Magnesium supplements instead this last Monday. It's for the Dystonia and myoclonic jerks and spasms. It's worse when I'm laying down or about to fall off to sleep, but it started back in my entire body which was previously eased by the relaxers.
I continue to use the tools and coping strategies learned in the FRP aka my Flare-up protocol.
Phase 2 is Monday evenings.
Beginning yesterday, We're home schooling our son. It's actually Independent Study (ISP)
We created his daily subject schedule of 6 courses last evening.
Am staying as busy as possible even through the crashes.
I know there's much more, but think that's it for updates... cannot recall much more going ons at the moment..
Hope you all have been well..
Until next time...
Tuesday, September 15, 2009
I have a lot of experience, in a lot of areas, none expertise. The last 2 days I've been focusing more on work from home positions, but I really want to work outside the home a few hours a week. I've already hit brick walls and I knew I would. It's the working outside the home jobs I'm not yet having any luck with. So far, my legs are the problem in these. While I believe I could do it with a sit/stand station or reasonable accommodations I'm not what they are looking for.
I'm in one of those damned if I do damned if I don't situations even applying. The application process.
The law doesn't require me to reveal my disabilities, but if I'm not honest how does that work establishing honesty with a prospective employer from the get go? It doesn't.
I am extremely uncomfortable about this. I have to tell enough for a chance at accommodation that would better enable me to work or I'd be fired the first day as I would not be able to perform my duties.
Sitting is the less of my worries, but I cannot sit longer than an hour a straight either. I could push it to an hour and a half and would, but I'd be screwed in body doing so.
Standing in one place is for 5 minutes is just as bad as walking and pushing myself to 10 minutes, when I can go 7 minutes fairly well putting pain aside.
I'm trying hard each day to be able to wear shoes for a fair amount of time, but none of it would even equal a 4 hour work day. I had not worn shoes in nearly 9 years prior to my FRP. During desensitization therapy I started with sandals that covers the top of my feet and made it to about hour finally during the last 2 weeks of the program. I can could wear tennies for approx. 30 minutes. Since being home I've increased my sandals to 1.5 hours at a time, and a few times twice a day. Tennies close to an hour and longer if not walking.
I have 3 pair of sandals now. Yay! I love the look of all of them. They are totally me!
I have NOT been released to return to work, but I have been okay'd to search. My docs will approve or disapprove when an opportunity for hire has occurred.
This all seems complicated for me.
What if someone hires me? I still need it to be approved by the docs. I would feel disgraced to to have to tell the employer.. oops sorry Doc said nopers. I feel like they would think... then why did you even apply and waste our time? That would make me feel bad.
I have Myoclonia or Myoclonic seizures/jerks now. I fall into 4 of the 8 separate types of this. It's extremely scary when it's happening, but so far it only happens when I'm lying down or trying sleep. I can't imagine it happening when sitting up or out and about. As it is, it briefly causes my heart to stop, skip, and pound like in fear or sudden fright, and I have to remind myself to breathe again.
Doc did say my new med should help this in a few weeks. I do hope so because this happens at least a half dozen times a night.
So that there is no misunderstanding, these are not epileptic seizures of my brain. It involves my nerves and other factors. I was diagnosed with Dystonia a few years ago.
We got a new puppy that was delivered from Los Angeles last night. I'm raising him for our daughter until she comes home from the Army in December. He's 9 weeks old and she named him Sergeant. He's a feisty lil shit. Already commanding my attention and all. Am already potty training him and I'm feeding him by our daughters schedule for him.
He's already chewing on things.. like.. um me! And that's a no no. Will bite him back if he keeps it up. Am not kidding. ~smiles
Until next time..
Thursday, September 03, 2009
When I lay down to try and sleep at night I play my Kitty Cannon game on my Iphone. The original game is called Kitten Cannon and it's on addictinggames.com.
This is the lite version but it's still just as fun. I'm in the top 10 of the highest scores in all of CA. And for all of the United States.. 16th or about. It's my sleepy time sport. ~grins
I've become so un-trusting that those I really do trust I think will hurt me some how. I suppose because of those few that did in the past in the name of friendship.
Most people won't remain having anything to do with you if they aren't getting something bigger out of it. Ulterior motives and then some.
It reminds me of why I like to be alone. No one can hurt me and I can't hurt them.
Even in my work I keep a distance. I do what I need to do and bounce right back out of there. For one, I don't thrive on drama. I'm don't care to be sucked into the he said/she said stuff, yet I also worry that I'll get pulled in some how.
The Senior Leader is back from months of vacationing now. Yay! In a few days and after some rest, he should be taking over most of it again. Being lead Leader in charge all this time was exhausting.
I did my Yoga every time I felt stress coming on. It helped a lot! I don't take pills for anxiety, stress or fear anymore. I use my own resources that I was taught at the FRP.
I go to Pain Management every 2 weeks now instead of every month. Not sure when it will shift back to the normal schedule.
I'm off to play my game some more...
Until next time..
Wednesday, August 26, 2009
I did my induction yesterday afternoon. I was given 2 halfs about 20 minutes apart in the office. When I got home I was to take another half. 4mgs every couple of hours until midnight and start the full 8mg tablet in the morning. They dissolve under the tongue. YUCK! It's been compared to being 100 times stronger than morphine and 10 times stronger than Fentanyl. (I really don't know about that).
It is though without a doubt the strongest med I have ever taken. I've been looped since yesterday at my induction. I imagine I'll stay this way until my body gets use to it. Could be weeks, months, or years just like any other med if a tolerance is built up. Don't like the feeling... I mean I went to pet the dog at the end of the bed and it wasn't the dog it was a pillow. ~blushes
BUT LEMME TELL YA... OMG! It's true! My pain is so much better. Already!
My pain level hasn't been higher than a 5 since I started it. And there have been times it's held at a 3. I go back to pain management on Monday, when I switch to full Suboxone pain relief is suppose to be even better.
and know what? Moments.. just moments....I didn't feel anything. Nothing!
It was like a reverse scared! I was scared because I didn't feel anything. Can you believe that? It didn't last long.. but it was there. I mean it wasn't there...
Because of those seconds.... those minutes.. I'm not even sure if it was real or not.
~inclines my head...
For a few broken up minutes..
I didn't hurt at all.
Until next time...
Saturday, August 22, 2009
I hired a co-leader for my MDJ RSD group. This comes at the perfect time since I'm not sure how I'll be doing from tomorrow to Tuesday until I get home.
The man who I call the lead leader or senior leader has been vacationing for months now. I am glad he is.. we all have to live and have fun in life. Yet I've also been beyond busy. I'm looking forward to having an assistant. The girl who was chosen will be a wonderful asset to our team.
My driving isn't too good yet, but have been practicing.
I figure in the next couple of days if my bark or bite becomes too much..
Just yank my chain. lol
Until next time..
Thursday, August 20, 2009
He did promise me one thing. I'll leave there on Tuesday without any more withdrawals. It's only been studied in the last 3 years for pain. What they do know about it so far is that it blocks the pain receptors in the brain. I'm happy to be a clinical trial for this.
I have nothing to lose, but something to gain if it works. If I feel it doesn't help as much as Morphine, I get to go back on Morphine.
So I'll definitely be tracking my pain levels. I also look forward to letting others know how it works for me.
I know 3 other people who take it. 2 of them have CRPS, 1 doesn't but takes it for chronic pain. All have had remarkable results. I want to be one of them, too.
I'm hopeful but not getting my hopes up too high.
Until next time...
Thursday, August 13, 2009
Even more thunder rocks your world.
My internal battery is dying. Which means another surgery. It might sound like I'm whining...
And you're right. I am.
It's only been 5 months since my revision and the second lead added. Now I'll have to have my back and butt cut open again.
The 2 month healing time is just something I don't want to do again. I really am tired of it. Yet I have no choice in the matter. Well I suppose there is one choice... but I wouldn't survive 3 months of it.
Will call my Medtronic Specialist to test my robo ass for sure. They have to plug me in and check me with their own equipment. I'm sure though I need a new one. it's just not holding a charge without being strapped up to run off the base unit. Our SMUD bill is going to be so high. Cuz now I'm running off the wall, the homes power. Not even sure how long that will last. Cuz once the internal is drained, nothing but a replacement will bring it back on.
Can I say.. fuck! now?
Until next time..
Wednesday, August 12, 2009
The weather won't stay the same and my body flares every time it's about to do a turnabout. I've elevated, had pillows between my legs, increased the stimulation on my SCS and now my battery is completely dead. I have to strap up and charge myself soon and am not even looking forward to the added tenderness it's going to cause just doing it. I doubled up on my morphine which I haven't done in a few months now and it's not even lowering the hell a single point.
I've been resting all day.
I have 2 more things to try... Motrin and a warm epson bath.
And just ride it out...
Until next time
Sunday, August 09, 2009
Here's a link- http://www.webvet.com/main/article?id=1593
If we can move forward and do this in humans, can you imagine the relief we would get?
I do doubt the push for humans will happen sooner than later. There's too much money to be lost in the supposed relief and treating pain. Once again we're in the midst of politics...
The controversy continues to exists over embryonic stem cell research and I myself was hesitant of this for a long time... but everything changes when faced with the incurable...
This doesn't include Embryonic Stem Cells... but own cells...
even if it did....
But honestly... Can you imagine?
Until next time...
It was the first time I had used my wheel chair in 3 months. There was just no way I could accomplish all that walking otherwise. I did walk a lot though and only used the wheels as back up. i had hesitated even wanting to go because of it. I've hid away enough years because of that though and really can't do it anymore. It's more important to the man and family that I be with them.
They bought me a really cute pair of sandles (at the auction).. I use them for desensitization therapy because they cover the entire foot (ouch) but... yay, I am wearing something on them finally. Some days for a couple of hours. Some days not at all, still more than before.
I'm not too fond of clothing, especially pants. I don't like anything gripping my back and butt scars and my legs can barely endure fabric because of being so sensitive. That's something else I have to work on.
I've been too busy at MDJ. The other Leader has been traveling and we never appointed a 3rd. So I'm picking up all the slack. Am managing decently enough I suppose.
I'm not sure if I'm going to FRP P2 tomorrow. Will at least do a driving lesson.
Been playing Yahtzee on my Iphone here and there all day long for distraction..
So am off to play another game...
Until next time..
Wednesday, August 05, 2009
Might go later this afternoon or evening for a driving lesson. Am still too chicken to try. But I have to soon, my PT went out on a limb for me and got this covered by my WC adjuster and so I won't let him down.
I also went to the FRP Monday evening and finished my painting. My PT helped me with it. I've never painted on canvas before. Now part of me will be framed and displayed at the FRC.
If I confuse any of you interchanging FRP with FRC, FRP is Functional Restoration Program and FRC is Functional Restoration Center.
I put in a full day at MDJ yesterday then watched Hells Kitchen and America's Got Talent with the family. Dang.. young Thia is amazing. but I like Breaksk8 too.
I'm still doing Yoga everyday, just not always 3 times a day, or twice. Okay, I do it one time, just one time... just once..
I listen to music alot more again. I dance more often, granted it's with my upper body more than my lower at all, but it's still dancing, even when I'm on my ass. It's movement.
Oldest daughter is suppose to be moving out soon. My FRP psych said that was a good thing. (It is). but then tonight when I asked her again, she said she's not sure. Ugh
It wouldn't be so bad if the grandson hadn't colored up the walls, fed nachos to the fish, put a nickel in the nearly brand new washer (that is no longer working because of it) If it wasn't under warranty and the extended we purchased for when "anything" happens to it, we'd be out 800 bucks. Paid 1,600 for both washer and dryer approx 4 months ago. So we'll be having it fixed soon.
Oh and did I mention a nickel in the Wii too? Yep. Had just got it for xmas, this was oh 3 months after xmas. So it sat on the shelf for months. The man finally took it apart and Yay! Fixed it! Phew. He had just got me the Wii yoga and I had never used it.
Hm... yeah so the kid needs to pay better attention to her child. Because that's not the half of it.
Well sometimes parents have to kick 'em out of the nest and see if they can fly, but even with the stress doubt that'll happen but things will have to change. Big time.
Other daughter is still at Fort Gordon. She was never deployed because of the fracture. She did though graduate from AIT months ago. Not sure when she'll be home.
Son starts 7th grade next week. He just did a new track. His first major one. Usually he's a feat with Cash Boy Click. He was 7 or 8 when he did his very first feat. He does YouTube videos on a regular basis.
Was making hamburgers the other day when grandson turned around and said "Nana, I don't wan na crabby patty". lmao
I'm in good spirits. I do feel a crash coming. The FRP really gave me back my spirit. I can handle the crashes and flares better.
I mean.. I only cry 7-8 times a month now instead of once or twice a day. lol
I haven't broken anything in a long time. hahaha I did have that meltdown a month or so ago, but other than that am handling life as best as I can under the circumstances.
I had to charge my SCS earlier and haven't been to sleep yet. I can't wait until they come out with one that doesn't need to be charged every couple of days. They are coming out with one that will move with the body (the stimulation remains on and at the same level regardless of what position one moves in) Mine decreases in stimulation when I bend forward in a sitting position, yet gooses me at high power when on my back.... soooo yeah that will be a good thing. When I had my revision my medtronic specialist said in the next 2 years.
I have to have my battery replaced next year (cut yet again), I wish the change would have been sooner so that it could all be done at once, but noooooooooo.
Am gonna watch some American Justice before my inbox fills up with the days group posts..
Until next time..
Sunday, August 02, 2009
I still won't be able to drive on the freeway, but we have lots of mini malls around here, so everything I would want or need to get to is within a few blocks. Once I go back to work, or start driving to Monday's FRP, I'll learn the back streets to get there. Actually it's the same way he takes me now.
Every time I think of driving I have a panic attack. And I'm not taking anxiety meds anymore, so it's not a quick relief, I have to work hard getting myself out of those moments of fear. I did learn how to help myself naturally at the FRC.
During bio feedback, when they forced me to stress.. (actually forced me by showing me words of colors, but I had to say the color, not the word. For example.. The word blue would flash across the screen, but it was really yellow in actual color) Ugh...
Anyway.. I don't recover easily. So when I panic, I'm not allowed to close my eyes...
Instead, I'm suppose to find a visual focal point and bring myself out of the panic... It really does help.
So if I looked at a picture, I start talking out loud about the picture I'm looking at.. describing it.
I'm proud of myself that I can help myself without all the meds I was on. I am still taking 2, just not the 7 I was on 2+ months ago.
Honestly if someone dropped me off across town (where I would be driving myself home)
I would not be able to get home. I have to re learn my own home town. I'm not at all familiar with the area of town where we bought our home. Even as a passenger, I don't recall it.
So I've got lots to learn.
Until next time
Thursday, July 30, 2009
I did get my authorization for the Left Foot Accelerator and need to make an appointment so that it can be installed on the van and I can be taught how to use it.
My 3 month post program goal was to drive myself to Monday evening Phase 2 classes.
We went to the drive-in movies Tuesday night. Saw Orphan and the Hangover. Okay movies. Was nice to get out.
Have some reading to review
Until next time...
Saturday, July 25, 2009
Tuesday, July 21, 2009
Am allowed to trade the treadmill off tonight and go to the store with him instead. That will get my walking time in and at least I'll actually be doing something.
The photo I posted is probably the only one people will see of me full length. That's one of those rare occasions. I have more, more people in the photos, but am not sure yet if I'll post.
Maybe I'll post one where I'm behind everyone else. lol
Still waiting on the authorization for the Left Foot Accelerator and the switch from Morphine to Suboxone.
I'm still taking minimal meds and it's hard. I've had to take Neurontin again. It's the only thing that actually eases down the burning nerves. I do only take it when absolutely necessary.
I still have an article to write regarding the program. So much information. Both what was taught and what I actually learned and experienced.
My outline already has at least 2 dozen points to touch on.
It's been a productive day for the most part.
Until next time...
Saturday, July 18, 2009
Wednesday, July 15, 2009
Yesterday I went grocery shopping, I came home rested and then made dinner. Tonight I began making steak chicana to take for Fridays graduation. It takes a long time to make this. First is the meat in the crockpot over night and then tomorrow all the rest is added.
Anyway.. I'm doing things like this, but it still doesn't seem like it's enough. Maybe it will never seem like it's enough, but I have to learn to be happy for what it is.
So far... that's not happening.
I already feel myself slipping. I try to keep my self-talk positive. I do make 3 daily goals. But...
I am accomplishing them so far. hahahah... Doubt that will last long. (not good self-talk)
I start on Monday's starting um... next Monday.
I guess my nerves are up there right now and I'm torn between caring too much and not giving a shit.
Not nice really.
I've never been a quitter and everyone keeps saying... you aren't a quitter, you fight and fight.... yeah... I do, I have...
but for fuck sake... how long am I suppose to keep it up.
It's really only "acting".
The better and better I get at that means no one will ever know otherwise, unless I tell them. And probably not even then if I'm good at it.
I'm probably not making much sense right now and that's okay....
I danced my ass off the other night....
And that pain was so worth it.
Until next time...
Sunday, July 12, 2009
I need to work on routine. Tomorrow will be my first day of it. For sure each morning that I wake up I'll set 3 goals and do my yoga. By weeks end he should have a daily routine scheduled for me and while this will work best for me, no one is suppose to be setting it for me other than me. ( according to non lifestyle oriented guidelines lol )
It's been a hard 6 weeks. The program exceeded my expectations in many ways. I exceeded my own expectations. I would encourage anyone with chronic pain, incurable diseases and disabilities to look into it or one similar. I increased my range of motion in all directions, my walking and standing times. Individual feet standing time. Everything.
Starting next week, I will continue to go on Monday's for.... hm, mostly indefinitely. Instead of a full day, it will only be from 4 p.m to 5:30 p.m.
I'm still waiting on an authorization for a "Left Foot Accelerator". Am not sure if I mentioned that or not yet. But it would give me back the ability to drive at least nearby.
I really want a job outside the home.
I can finally wear sandals for about a total time of 2 hours a day and sneakers with socks for an hour. I don't think work will let me go barefoot as I have been. Even at program I was barefoot 'cept during desensitization therapy and using the rest room.
Don't have too much more to say right now...
Until next time
Sunday, July 05, 2009
A few kids that our own kids grew up with came over. Have known them since they were young teens and they're all in their early to mid 20's now. They're like family.
It was a great time. The babies played in the little pool. I was going to, but didn't.
Later we did fireworks at the edge of our drive-way and in the street. The 22 years prior we lived in a County that outlawed them. Here they aren't.
Was just a really good day. A full day. I paced myself as best I could. And it all turned out well.
Only a week or so left of my program. Either graduate on Friday or the following week.
3 of us graduated last Friday. I'm next.
Hope you all had a happy and safe 4th.
Until next time...
Monday, June 29, 2009
Today though I was placed back on Morphine twice a day. In 2 weeks I start a treatment program using a med similar to Methadone, but called Suboxone. And actually the first of it's kind since Methadone in the last 30 years. It's also been used to treat pain. Still in clinical trials for that, so I'll be a test subject of sorts and I think that's okay with me. I say "I think" because I felt like a failure in many ways even though I've succeeded. I still started out with 7 types of medications a day, equaling more than 15 a day by intake and am only on 2 and when I quit the Morphine again it will just be replaced with the new. So just 3 intakes of pills a day.
I have to remember I have come far in such a short time. I have 8 days left until graduation. Weekends don't count.
I have to work on my "Self Talk". I'll discuss that at another time for those unsure of what it means.
Gosh, there's so much I've learned I haven't talked about yet. I know I've said I would and I will when I have more time. Might be a month from now when all that gets started.
In the meantime..
I truly wish each of you most well
Always breathe easy...
Until next time..
Sunday, June 28, 2009
Okay but seriously...
It was not for pity or attention... it was because people do do this. I've done it. Some can say those of us who have are crazy... (I am crazy lol). We aren't that crazy after all.
It is a release of sorts. For me pain diverts pain, a distraction. When you are barely holding on and you can't get rid of physical or emotion pain... it's a reaction.
All in one sweep of my nails from my right fingers... I did it to my left arm. There wasn't any warning... it simply occurred. I had already done it to my upper wrist 2 days prior. I wear a scruncie on my wrist, so no one could see at program.
This has nothing to do with attempted suicide or suicidal ideations...
It's like a swimming pool full of water... and pulling the plug to let it out...
Until next time...
Saturday, June 27, 2009
2. Our sons graduation from the 6th grade was very awesome. I walked on my own 2 feet. While in the past I would dwell on what I couldn't do, I now smile at what I can do. I've now come to realize that 7 minutes can really get me real far.
3. I graduate from my FRP approx. July 17th. I have a couple of make up days.
4. I'm listening to music a lot more again. For years that's what I would do if on the comp or cleaning, etc. For over 2 years, I've barely listened at all. Pain even made music go away.
5. I did more than crash and burn the other night, I got drunk while withdrawing and cut myself across my entire left arm from shoulder down, upper wrist, it's like what's stuck inside in one place, I let out another. .... well, what's done is done.
6. I didn't get 5150'd, 'tis a good thing too, I might have resisted arrest. Phew!
7. I've lost a lot of weight.
8. It feels so good to be bad and so bad to be good.
9. Everyday is a learning experience.
10. No regrets.
Until next time...
Thursday, June 25, 2009
Wednesday, June 24, 2009
I made a post to the GP forum on CM that was not so nice. I will accept the consequences of my actions, but I cannot regret them fully. When regret starts to take over I have to remind myself there is no regret.
I feel soooooo free now.
I got rid of a part of my life that caused hurt to linger inside me. I don't feel that anymore. New emotions are trying to make their way inside me because of my actions, but I'll keep shoving them back.
No it's not my nature to do or say what I did. It's my nature to let people walk on me, use me, be there for everyone else but myself. I am being taught, molded and re programmed in a very different way.
Right now I'm a slave to a team of doctors in a way, they set my entire day for me, every last minute of it is scheduled by them. My routine is what others require of me.
Yesterday wasn't easy to say the least... and in so many ways was detrimental...
But I accomplished something regardless the outcome...
My plate isn't spilling over anymore.
Until next time...
Sunday, June 21, 2009
(Cross posted from MDJ June 21, 2009)
As you know I've been quite busy with the Functional Restoration program which I've been attending since May 26th. I will graduate around the 15 of July.
When my doctors told me to let everything go that had to do with RSD/CRPS, I didn't understand. I even struggled with it. I didn't understand why they would tell someone who's put years into advocating, promoting, advertising, supporting RSD related circumstances and their heart to just.... back off.
I'm finally understanding why.
When we speak of pain, share our stories, discuss WC, all the pain it's caused us physically and mentally, the turmoil, the stress, how there is no cure for us, we are reliving the injury and pain that brought us to a suffering point of existence over and over again.
After deep deep thought, I can now understand what they mean and for our own sakes.
While I always believed that opening up (when I was finally able to do it) was a road to acceptance, I never believed in any way that by doing so could be detrimental to me.
Because I've started too much that I can't go back on, I won't be leaving what I did behind. (what I did was bring many of us together, offer knowledge and insight, and more, just like most of us do) We're on this road to make a change, provide awareness and really try to do something about it.
Instead I have to find balance to do as my doctors instructed me AND finish what I started.
Now I ask each of you.. (Please think about this carefully)
Does it help you to speak of your prior lives, your existing pain, all the hell this has cast down upon you...
Or when you really think about it...
Does it tense you to do so? If it tenses you, it's adding to physical pain, if it's causing you to think back, it's adding to your emotional pain. This will always keep us in a painful cycle.
Just because I've finally come to believe this to be true, at least mostly true, doesn't at all mean any of you do. Instead, I would just like to know your feelings about it.
There is no right or wrong answer.
Thank you in advance for sharing...
( My name has been omitted because it just doesn't matter)
Tuesday, June 16, 2009
I'm going out this weekend. Back to my people, where I'm known and recognized. A little bar in West Sac. I used to work there under previous ownership. It's like a real life Cheers, even though there's an actual bar called Cheers just down the street.
Everyone knows me........
I've hid for years... Isolated...
It's time to be...........
The new me... a mixture of the old me...
And just fucking live... You know?
Who gives a shit if it's over, almost over... whatever...
It's that moment that counts...
I have no worries that it won't count... It's going to.
I can't be sorry like took the road that it did.. I have to embrace every moment of the differences and learn to accept them, gracefully.
I just gotta let people love me.. instead of hiding when they tell me they do.
Grab onto today and not let go... let tomorrow take its own course and let the future be what destiny has already conquered.
No I don't always like to accept that, but I have to.
If someone thinks I'm stuck up or into myself, it's not true, truth lies in what it is and has always been...
It's easier to pick someone else up than implement the changes and growth of self.
I'm understanding self-dialogue better and better..
the words of a fellow pain patient rather than self theory or self talk..
Be happy for what you've been gifted..
Do you believe in angels?
Until next time...
Saturday, June 13, 2009
Yay! It's the weekend! It's going to go by quickly, I know. Last night was hard as hell. I got through it by meditating. I fell asleep sitting up several times and each time I laid back down, my P&E sky rocketed. I didn't wake up on time this morning, but was up by 10:00 a.m.
Coming off Morphine is so yucky. It's not like it was last year when I was hospitalized for major withdrawals, that was a cold turkey withdrawal because I couldn't hold anything down from the flu. This is easier, just not easy enough.
I've missed the bathroom a couple of times, so have a bucket near me. The body doesn't know if it's going to um puke or potty, so one gets both feelings at the same time. Not fun!
I have some good news on another subject but will share it another time.
I think I mentioned previously that I'm losing weight. I know a few of my meds contributed to this and since I'm not taking them, it's just falling off. I'm not fit by far, but pounds themselves are just disappearing. I'm working to tone myself with the loss.
Everytime I pull my tanktop up, I get excited. The panties I hate wearing are so loose. And while this may not be very tactful of me, I just slide my hands down my shorts right in front of everyone to pull them up. Program, family, it doesn't matter. lol
I'm handling this all quite well considering most of it. Many would not dare give up their meds. I did. Nope I cannot say it will be forever. Besides I shouldn't worry about tomorrow right? Right! But I do anticipate it. It's just part of who I still am. No different really than anticipating my owners thoughts so that I could know what he wanted or wants before being told. Still there are some differences I suppose.
I had my re eval yesterday and I met my goals. Infact, I exceeded them.
(puts the bucket aside again, ugh)
It would be so easy to pop a pill or 3 and make the withdrawals stop, but I won't. I think the tummy cramps are the worse. The headache has past for now. I have though been using Tylenol and Aleve.
It's a good day overall. I can take my night time Morphine in a few hours. On Monday that may be cut as well and then I'll be off everything 'cept 120 mgs a day of Cymbalta.
I just don't want to experience the continued withdrawals. I admit I'm scared to feel more.
Oh yeah... my sex drive is increasing. Yep it was screwed up because of all them meds also. Sometimes it just wasn't there. Not that it mattered much to me, I still serve the man at his will.
But now.... ? After a nearly 9 year decrease in sexual appetite. I just might poop him out. It's all been building up ya know and and.... um...
I was about to get graphic, I'll be good....
Until next time...
Thursday, June 11, 2009
I've learned a lot. I'll still do my yoga tonight. I had a hard time pulling myself out of bed at all. But I had to. I'm in the living room now. Being out here is a big thing even though it might not seem so. I've been isolated so long pre program. When I hurt, I tend to hide. That's what I know.
I felt myself coming up there for awhile, staying on routine, doing my home work, working on my factors, goals, etc etc... but today? Blah.
It's one of those days I find myself asking "How?". How am I going to do this long term, how am I really going to live life, how am I going to be able to get my ass up on those days like today and go to work, or go out, to the store, anything that needs to be done. I can handle the disability, I can handle there is no cure, I can handle all that crap I was in denial for so long, I can't handle pain!
The fire, ice, throbbing, dull, get the fuck outta my head pain that just goes on and on and on, never stops and my back up, my meds... I told them I was strong enough to stop them. I was...
just not now. lol
I go to bed on time, generally I wake up on time now (not like today) but even on weekends, I try to breathe right, I've learned to, but I have to be conscious of doing so, or I hold my breath which tenses my body then causes even more pain. I have to constantly tell myself to breathe. Even during sex. lol
I've learned that if I can do all this without meds for 7 years and take really good care of myself my body will generate good cells, which right now are so broken. It's probably not likely, but it gives some hope. I think. lol
I don't drink coffee after 5 p.m on weekdays anymore. While I never thought it interfered with my sleep, it probably does. I really am doing a lot to change things.
I'm on 25 words in the memory mastery system. That isn't easy for me. Once upon a time, I could have learned all of them fairly quickly.
Everyday we are conditioned to keep in mind, we will never be who we used to be, we have to accept who we've become.
Um... that's not easy. I don't like it. But I'm starting to come around.
I've dropped about a pant size in clothing since starting this program. Maybe more, am not sure, I wear loose bottoms because of the sensitivity of my scars and skin.
Oh, I wore socks for 10 minutes yesterday, I'm working on being able to wear shoes again. My baseline was 5 minutes and I made it to 10. I've started the balance board and do that for 1 minute, 3x a day. I ride the bike for 10-15 minutes depending on resistance. I do scrubbing for 45 seconds twice a day. I don't like that. Ugh. But I do it. And of course biofeedback is after each. I'm not sure if my atrophy in my right calf is getting better. Maybe I can find that out tomorrow. It's been holding at 2.5 cm for years now. Well, 2.0 then 2.5. but has never returned to normal since 2001.
Okay, so I think I've babbled enough for now... Bones is on, I like that show.
I'm about to do a new yoga position, the Egyptian stand. Try that for 2 minutes. I can only do it for 30 seconds right now, but will increase time as I go. The 3 fundamentals of Yoga... BET. Breathe, Effort and Time. ~grins
Until next time...
Friday, June 05, 2009
The last two weeks have been so hard. I began the Functional Restoration Program last Tuesday as Monday was a holiday. While I was so interested and hopeful of the program on Tuesday, I was late Wednesday because I thought I couldn't handle it. My legs were hurting, my feet were on fire, it was too much. I wasn't going to go in, but I did. Everyday I do PT, everyday I do Yoga, everyday I do relaxation, several times a day I do biofeedback, everyday I set goals and so much more.
My mobility has gone from nearly nothing to weight bearing on a regular basis. It's not often, but I'm pacing myself and working harder to reach each physical goal that I set. My range of motion (RoM) has improved already. My pain level seemed to be a constant 8+ and emotional level was just as high. Today was the first day I had Physical and Emotional (P&E) level of 6/5.
During my Physical Therapy I walk, I do Mirror Therapy, I do ankle pumps, I ride a bike. I've challenged myself to stairs, I play catch with another CRPS patient to increase movements. IT HURTS. All of it! I have quit 3 entire pain medications and Lidoderme in addition to decreasing morphine 15mgs a day. I went from 7 meds to 2.
Trust me, it isn't easy. We spend a lot of time with the psychological aspects of chronic pain. We are taught about sleep, it's importance, how to sleep if one cannot. I rarely sleep. I have extreme difficulty tackling pain and racing thoughts.
It may take me some time, but I will be passing all that I learn on to you.
I have missed each of you,
Warmest wishesUntil next time...
Saturday, May 30, 2009
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
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
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
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
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
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
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...
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 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..
Saturday, May 09, 2009
Thursday, May 07, 2009
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.
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...