I've been down for 2 days. The price I pay for activity, even a few hours up and about in the home. Sometime yesterday the man brought me in 2 pillows that were suppose to be xmas gifts, we propped one between my legs. I was laying on my left side, we slid it in close to my crotch so that my right leg was elevated as well as part of my butt cheek. I've had butt damage since my original injury but when RSD spread to my butt after my last SCS surgery, I've had a new struggle to deal with. I often sleep sitting up on my left butt cheek. The family often comes in to lay me down, I rarely know I'm sleeping that way. Just another obstacle I'll defeat. I do worry a bit about my next SCS surgery. My battery needs to be replaced. Don't want to think about it too much because then I won't dwell. It's just one of those things.
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..
Showing posts with label RSD. Show all posts
Showing posts with label RSD. Show all posts
Sunday, November 22, 2009
Wednesday, August 12, 2009
Monday, January 05, 2009
Clinical Trial: Medicinal Cannabis- RSD/CRPS Completed
In November of 2003, UC Davis Medical Center in Sacramento California began a clinical trial for Medicinal Marijuana use for Neuropathic pain associated with Complex Regional Pain Syndrome (CRPS) type 1 and 2. Having been diagnosed with RSD/CRPS type 2 (Causalgia) the same year, I was very eager to participate in the study. The best part was that UCD Medical Center is located just 15 minutes down the street from us. Due to certain circumstances I was not able to participate.
For information about this study please refer to ClinicalTrials.gov .
ClinicalTrials.gov processed this record January 5, 2009. (Today)
What is interesting is that while cannabis for the casual user is technically illegal, mandatory eligibility requirements constituted having previous marijuana experience. You could not be marijuana naive and participate.
While I've never been a big Ganja user, I conducted my own study since I couldn't participate in the Clinical Trial.
While I'm almost certain most participants would claim it decreased their pain significantly whether it did or not simply because when severely pain stricken we become so desperate that we'll do almost anything to survive the moment. With a prescription from our pain manager we can buy, grow (up to 12 plants) and use it legally for pain.
My own personal study concluded with this:
It did not help beyond an approximate 20 minutes for pain itself. I would presume it was because during that 20 minutes I was high. My mind was sidetracked. This is not a bad thing. 20 minutes without pain or even "thinking" you aren't in pain can seem a lifetime when the alternative is praying to die.
When I finished smoking no more than a quarter of a joint, equivalent to 2-3 short to moderate inhales, my legs rushed with warmth, this is also a good thing, it means the damage from the nerves in my legs was responding, but when the pain began increasing again and at it's peak it seemed tri-fold from where it started.
It also heightened my hyper-sexuality. Yet another good thing. However, when the feeling of triple terror overwhelmed me when the pain returned, I was again back to being afraid to be touched as my flesh has become so sensitive over the last couple of years that a brush of passion, a touch of love, feels like being cut with razors instead.
Those with CRPS type 1 previously known as RSD may have better luck. CRPS type 1 means no known nerve injury or damage. Type 2 means with known nerve injury and damage. CRPS type 2 was previously known as Causalgia. RSD became a universal term to mean either.
I am interested in knowing how cannabis has helped those with CRPS type 2.
Is it really worth it? And is it worth it enough?
Perhaps.
~rsdcrpsfire
For information about this study please refer to ClinicalTrials.gov .
ClinicalTrials.gov processed this record January 5, 2009. (Today)
ClinicalTrials.gov Identifier:
NCT00254761What is interesting is that while cannabis for the casual user is technically illegal, mandatory eligibility requirements constituted having previous marijuana experience. You could not be marijuana naive and participate.
While I've never been a big Ganja user, I conducted my own study since I couldn't participate in the Clinical Trial.
While I'm almost certain most participants would claim it decreased their pain significantly whether it did or not simply because when severely pain stricken we become so desperate that we'll do almost anything to survive the moment. With a prescription from our pain manager we can buy, grow (up to 12 plants) and use it legally for pain.
My own personal study concluded with this:
It did not help beyond an approximate 20 minutes for pain itself. I would presume it was because during that 20 minutes I was high. My mind was sidetracked. This is not a bad thing. 20 minutes without pain or even "thinking" you aren't in pain can seem a lifetime when the alternative is praying to die.
When I finished smoking no more than a quarter of a joint, equivalent to 2-3 short to moderate inhales, my legs rushed with warmth, this is also a good thing, it means the damage from the nerves in my legs was responding, but when the pain began increasing again and at it's peak it seemed tri-fold from where it started.
It also heightened my hyper-sexuality. Yet another good thing. However, when the feeling of triple terror overwhelmed me when the pain returned, I was again back to being afraid to be touched as my flesh has become so sensitive over the last couple of years that a brush of passion, a touch of love, feels like being cut with razors instead.
Those with CRPS type 1 previously known as RSD may have better luck. CRPS type 1 means no known nerve injury or damage. Type 2 means with known nerve injury and damage. CRPS type 2 was previously known as Causalgia. RSD became a universal term to mean either.
I am interested in knowing how cannabis has helped those with CRPS type 2.
Is it really worth it? And is it worth it enough?
Perhaps.
~rsdcrpsfire
Wednesday, December 31, 2008
2009 ToDo List
1. Continue to be the best slave that I can be to my Master and with unconditional servitude accept his decision to take another slave when that time comes.
2. Continue to strive harder by sleeping less to spend as much time as I can with my family. They need me in their presence and I need them in mine.
3. Try not to judge a person based on the judgement of others. I can decide for myself and learn for myself. I don't need saving.
4. Let go and toss away all the negative energies amidst life's complications. I don't need drama, I don't seek it and I don't thrive on it, I'll remain content in my little 'ol world. I'll be sure to live longer without the anxiety and stress.
5. Make sure that I'm always available to help those in need, especially those struggling with and attempting to survive RSD(S)/CRPS. Pain is universal, but so is hope.
6. Continue to work hard in finding a cure for RSD(S)/CRPS. Providing information, resources, advocacy, constant research, clinical trials and promoting awareness to the entire world.
7. Continue to work on my degree in Corporate Publishing. It may take me forever, and it may never happen, but I can keep trying. *I already passed the pre req classes with a B average and earned that certificate.
8. Try to keep my body healthy and strong despite the complications. I've beat negative odds before, I can do it again.
9. Be the reminder that when ones life becomes borrowed time, your entire outlook on life changes. It all changes. Everything it once was changes. Show others that if they fix the negatives, hurt and bitterness in their lives now, there will be nothing heavy on ones shoulders to carry around, instead only peace. Pass on in peace.
10. Never step back and never stand down. If someone said, I'm going to die tomorrow, I'll be right there telling them I'm going to live past it. If I'm told it's over, I'll tell you, it's only just begun. If I'm told I can't, watch me, I will. If someone told me they're leaving, I'll say, that's okay, I'll still be here for you. If someone told me to "go get fucked", I'd say thank you, don't mind if I do. And then I'd go beg some. And with it your request would surely be granted. ~winks
Bonus. Life Goes On
2. Continue to strive harder by sleeping less to spend as much time as I can with my family. They need me in their presence and I need them in mine.
3. Try not to judge a person based on the judgement of others. I can decide for myself and learn for myself. I don't need saving.
4. Let go and toss away all the negative energies amidst life's complications. I don't need drama, I don't seek it and I don't thrive on it, I'll remain content in my little 'ol world. I'll be sure to live longer without the anxiety and stress.
5. Make sure that I'm always available to help those in need, especially those struggling with and attempting to survive RSD(S)/CRPS. Pain is universal, but so is hope.
6. Continue to work hard in finding a cure for RSD(S)/CRPS. Providing information, resources, advocacy, constant research, clinical trials and promoting awareness to the entire world.
7. Continue to work on my degree in Corporate Publishing. It may take me forever, and it may never happen, but I can keep trying. *I already passed the pre req classes with a B average and earned that certificate.
8. Try to keep my body healthy and strong despite the complications. I've beat negative odds before, I can do it again.
9. Be the reminder that when ones life becomes borrowed time, your entire outlook on life changes. It all changes. Everything it once was changes. Show others that if they fix the negatives, hurt and bitterness in their lives now, there will be nothing heavy on ones shoulders to carry around, instead only peace. Pass on in peace.
10. Never step back and never stand down. If someone said, I'm going to die tomorrow, I'll be right there telling them I'm going to live past it. If I'm told it's over, I'll tell you, it's only just begun. If I'm told I can't, watch me, I will. If someone told me they're leaving, I'll say, that's okay, I'll still be here for you. If someone told me to "go get fucked", I'd say thank you, don't mind if I do. And then I'd go beg some. And with it your request would surely be granted. ~winks
Bonus. Life Goes On
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