Hope is much more than wishful thinking. It's feeling. A feeling, it's emotion. It's something to look forward to and something to believe in. There's no magic Jeanie to grant our wishes. One thing hope and wishing have in common is desire. We can hope against hope or wish upon a star.
I meditate on hope, I've never meditated on a wish.
I've been so busy continuing on in the path that was laid out for me nearly 10 years ago. A path I had not yet seen coming but had broadened quickly. It took on it's twists and turns and bumpy roads. There were ditches to fall into and muddy waters to crawl out of. There were times I began to sink and I felt as if I was drowning in my own misery.
So many times I gasped for air, I couldn't breath. Fear of the unknown overwhelmed me. Suicidal ideations came and went. I self medicated in bottles of whiskey (2002-2004). I hurt so badly. I truly thought I wasn't strong enough to survive the painful, progressive and debilitating disease that was taking over my body. I suffered. I was scared. I would dwell on the future.
How could I serve. How could I keep a good home. How would I care for my Master, my husband. How would I attend school events, how would I walk our kindergartner son to the bus stop (2003). He wasn't able to go to preschool.
I did 8.5 months of intense physical therapy 3 days a week for 2 hours a session (2001-2002) just to learn to weight bare again. My husband whom I've belong to since I was 17 got me ready each day, loaded up the wheelchair and got me to each and every appointment despite the fact he had to work as well.
Our daughters were 11 and 12 (2oo1) when I was first injured. They had to take on the responsibility of caring for the home and our oldest daughter Kharisma became her little brothers second mom. Our girls are 12 months and 4 days apart. Our son came 9 years after our first.
I lost a baby while in physical therapy (not during a session), a long ugly story. (Jan 8, 2003).
As years passed I never did heal instead I developed other illnesses both physical and emotional. Finally in 2006 I received treatment other than pain medications and pain management appointments. I was given a series of 3 Lumbar Sympathetic Blocks scheduled 1 week apart and then a trial Spinal Cord Stimulator and within a couple of months the permanent was implanted.
I had another LSB on the second of this month. A total of 14 now. Originally I had a single lead/wire on my spine. I've had 2 since 2009.
I attended a 6 week long, 5 day a week, 8 hour a day Functional Restoration program. (2009)
I'm suppose to begin a trial study for Cold Laser Therapy beginning early next month. Within weeks. While the protocol isn't absolute as of now, when I picked up the contract to sign I was told it could be as much as every other day for 4 weeks. I'll gladly be a guinea pig to provide hope for the future. Not only in myself, but for millions of others also.
I'm nearly finished with the current study I'm doing on Inflexxion on Neuropathic pain.
I'm still work for MDJunction.com as a Group Leader in the RSD support forum.
http://www.mdjunction.com/reflex-sympathetic-dystrophy (ID- rsdcrpsfire)
In 2005 I turned my dark world around. It became my passion and purpose to make a difference. I work daily promoting awareness, offering resources, support and information in regards to Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome.
My website is still at http://www.crpsadvisory.com
My Facebook is http://www.facebook.com/rsdcrpsfire
It's used for both work and pleasure. I feel no need anymore to segregate me from me.
Living with RSD Radio which I've appeared on both as a guest twice and a co host previously is now called...
Living with Hope Radio Show with Host Trudy Thomas (until further notice, I am your co host)
http://www.blogtalkradio.com/thematrix777
I am privileged and honored to be apart of the show. I expect nothing in return. I'm happy to work for Trudy and am thrilled to learn even more from the guests who come on to her show.
(It also makes me happy to know that members (in various venues), listeners, readers and viewers learn from me)
If someone feels I'm in the wrong place, I have permission to be the judge of that. There seems to be a bit of drama everywhere. Those who know me well know very well I'm not swayed by gossip.
The show has spread it's wings and broadened it's episodes beyond RSD/CRPS. While RSD/CRPS is still a focus chronic pain, depression and other illnesses are aired.
The show airs live Monday's 5:00 p.m PST and Friday's 9:00 a.m PST.
A chat room is available during the show. Listeners can call in and ask questions of the hosts or guests.
Lots of new things coming soon.
The show circles around hope because it takes hope and inner strength to over come the obstacles that life sometimes puts in our way.
Hope to see you there!
Once a sufferer, forever a survivor,
Until next time,
Friday, December 24, 2010
Saturday, December 11, 2010
As the year comes to an end
Been a while since I've written. Don't really know where to start.
I had another Lumbar Sympathetic Nerve block on the 2nd of December, a bit over a week ago.
My pain decreased decently and I was blessed to have such a breather. When it came back it came back hard and strong, depression started to set in, but I was keeping good humor and making sure I laughed and giggled at all that I found humorous. That's one of the things the psych doctor stresses the most in for those like me.
I fell asleep Friday morning after making a post to the Gorean Forum at CM that in parts weren't very nice. I didn't see it that way at first and not until cmailed by a FW. It was the fact that I had giggled at a Free man that got me scolded at. I really didn't mean to say what I did the way that I said it.
Was told I sounded or conducted myself more as a Free woman. Many people still see me as they did yesterday. The passive slave girl who would not ever dare do such a thing.
I wasn't thinking about online, I was thinking about living and not being ashamed of it. No excuses, but there are reasons.
It's just that I am free. No.. not in the manner in which you might think.
I guess you have to have a chronic disease or be dying of or surviving cancer or similar illnesses to understand.
I'm part way through with the Neuropathic Pain Study conducted by Inflexxion.
In January I'll begin a clinical trial, a study on cold laser therapy as a treatment for CRPS.
It's not a one time treatment, I'll need to be available through out the week and up coming weeks until completed.
My dad finally got out of the hospital after returning several times where his life was on the line in several circumstances. He's finally home and I'm happy for that. Mom's kidneys aren't well, but not bad enough for dialysis as of yet. Thank God!
I'll be on the air again live with Host Trudy Thomas on the Living with RSD radio show beginning this Monday.
http://www.blogtalkradio.com/thematrix777
This episodes guest is Seth David Chernoff, facing death as a two time cancer survivor.
Again the shows are live for 1 hour. Guests can call into the radio station to ask questions of the guest or host. You can join the chat room during the show to participate.
You can friend yourself to receive show reminders directly to your email.
I'm still a Group Leader for MDJunction's RSD Support forum.
Looking into more clinical trials.
Had a good Thanksgiving. Had my brother and kids over.
We're changing our own Christmas day since our oldest daughter works Christmas eve and day.
Not too sure what else to say right now.
Oh after the cold laser therapy we'll being doing a radio show on it. Will let you know when the time comes.
Wishing everyone a happy end to this year...
Until next time...
I had another Lumbar Sympathetic Nerve block on the 2nd of December, a bit over a week ago.
My pain decreased decently and I was blessed to have such a breather. When it came back it came back hard and strong, depression started to set in, but I was keeping good humor and making sure I laughed and giggled at all that I found humorous. That's one of the things the psych doctor stresses the most in for those like me.
I fell asleep Friday morning after making a post to the Gorean Forum at CM that in parts weren't very nice. I didn't see it that way at first and not until cmailed by a FW. It was the fact that I had giggled at a Free man that got me scolded at. I really didn't mean to say what I did the way that I said it.
Was told I sounded or conducted myself more as a Free woman. Many people still see me as they did yesterday. The passive slave girl who would not ever dare do such a thing.
I wasn't thinking about online, I was thinking about living and not being ashamed of it. No excuses, but there are reasons.
It's just that I am free. No.. not in the manner in which you might think.
I guess you have to have a chronic disease or be dying of or surviving cancer or similar illnesses to understand.
I'm part way through with the Neuropathic Pain Study conducted by Inflexxion.
In January I'll begin a clinical trial, a study on cold laser therapy as a treatment for CRPS.
It's not a one time treatment, I'll need to be available through out the week and up coming weeks until completed.
My dad finally got out of the hospital after returning several times where his life was on the line in several circumstances. He's finally home and I'm happy for that. Mom's kidneys aren't well, but not bad enough for dialysis as of yet. Thank God!
I'll be on the air again live with Host Trudy Thomas on the Living with RSD radio show beginning this Monday.
http://www.blogtalkradio.com/thematrix777
This episodes guest is Seth David Chernoff, facing death as a two time cancer survivor.
Again the shows are live for 1 hour. Guests can call into the radio station to ask questions of the guest or host. You can join the chat room during the show to participate.
You can friend yourself to receive show reminders directly to your email.
I'm still a Group Leader for MDJunction's RSD Support forum.
Looking into more clinical trials.
Had a good Thanksgiving. Had my brother and kids over.
We're changing our own Christmas day since our oldest daughter works Christmas eve and day.
Not too sure what else to say right now.
Oh after the cold laser therapy we'll being doing a radio show on it. Will let you know when the time comes.
Wishing everyone a happy end to this year...
Until next time...
Friday, September 17, 2010
An Emotional Wreck
My blog title seems accurate, but I have to keep it together some how. I've haven't been well the last couple of weeks, in a daze most of the time.
On top of the constant burning in my legs, having missed my (cover your ears guys) period for 2 months but still feeling it coming just added to the over all aches and pains my body has been going through. I kept having panic attacks, one minute I was there, the next I wasn't. A frightening feeling of jumping out of ones own skin and hopping back in just as quick.
I finally started my girl time and ... Ugh!
Spacing out when being spoken to, my mind was on something else, sensing something coming. A feeling of discontentment and then it happened.
The man lost his job 2 days ago.
He's just as emotional but I am his calm. I have to be. I am his security to feel it will be okay instead of that it won't be.
Prior to finding this out, I've gone days without sleep, other days I sleep too much, and I have become burn out on doing anything. I'm behind in housework, I haven't fed anyone more than once or twice in more than a week or so. Last evening I made pork chops and even that seemed to be a major accomplishment.
If I thought I could work outside the home I would be already doing it. I've been promoting my adult toy stores the best that I can without purchasing advertising packages. It's not easy when competing against top businesses in the same category. I won't spam people. I'm not the type to send or spam the links off to people in my address books. I continue to hold back on that one.
Nor have I ever entered a chat room and tossed the links out there. I can remember the days back when I chatted myself in Yahoo and was so annoyed by the amount of spam.
Spam took over! I, like many others I'm sure got tired of putting people on ignore. I quit going.
My dad is finally home from the recovery center/hospital after a 2 month stay of surgeries and infections. I haven't even called. I sent mom a text message to say I was so glad he was better finally.
I don't feel content to discuss my pain and emotions with others. I'm use to and happy being the shoulder others need to express theirs. I haven't even written in my journals or blogs for some time.
My blogs are available to more than just my contacts. Family, friends and any can read it. I've held back for that purpose. Ah well that's what this is for... to babble on my thoughts or business.
I woke early this morning. Saw our son off to school. I took 2 Neurontin/Gabapentin just a bit ago and now I'm spaced to the hilt and extremely tired.
Think I'll try to sleep again now...
Until next time...
On top of the constant burning in my legs, having missed my (cover your ears guys) period for 2 months but still feeling it coming just added to the over all aches and pains my body has been going through. I kept having panic attacks, one minute I was there, the next I wasn't. A frightening feeling of jumping out of ones own skin and hopping back in just as quick.
I finally started my girl time and ... Ugh!
Spacing out when being spoken to, my mind was on something else, sensing something coming. A feeling of discontentment and then it happened.
The man lost his job 2 days ago.
He's just as emotional but I am his calm. I have to be. I am his security to feel it will be okay instead of that it won't be.
Prior to finding this out, I've gone days without sleep, other days I sleep too much, and I have become burn out on doing anything. I'm behind in housework, I haven't fed anyone more than once or twice in more than a week or so. Last evening I made pork chops and even that seemed to be a major accomplishment.
If I thought I could work outside the home I would be already doing it. I've been promoting my adult toy stores the best that I can without purchasing advertising packages. It's not easy when competing against top businesses in the same category. I won't spam people. I'm not the type to send or spam the links off to people in my address books. I continue to hold back on that one.
Nor have I ever entered a chat room and tossed the links out there. I can remember the days back when I chatted myself in Yahoo and was so annoyed by the amount of spam.
Spam took over! I, like many others I'm sure got tired of putting people on ignore. I quit going.
My dad is finally home from the recovery center/hospital after a 2 month stay of surgeries and infections. I haven't even called. I sent mom a text message to say I was so glad he was better finally.
I don't feel content to discuss my pain and emotions with others. I'm use to and happy being the shoulder others need to express theirs. I haven't even written in my journals or blogs for some time.
My blogs are available to more than just my contacts. Family, friends and any can read it. I've held back for that purpose. Ah well that's what this is for... to babble on my thoughts or business.
I woke early this morning. Saw our son off to school. I took 2 Neurontin/Gabapentin just a bit ago and now I'm spaced to the hilt and extremely tired.
Think I'll try to sleep again now...
Until next time...
Saturday, September 11, 2010
Wednesday, August 18, 2010
Always Tired
I'm always so very tired.
Being busy poops me out, doing nothing poops me out.
I was chosen to participate in a Neuropathic Pain Study. Originally I sent my fax in to late via the man and having to rely on him. I was put on the waiting list. After replying that I was still interested if a spot opened, I was emailed back within days that there was an opening.
This is a 6 week study. I'm hoping it helps me as well as the millions who suffer or struggle with neuropathic pain and similar conditions or disorders.
The last radio show went great! I was low in the beginning and went from head set to hand set mid show. It did go well after all. You may have to turn me up in the beginning. The show was on Mirror Therapy and Desensitization.
Here it is nearly 4:00 a.m and while I'm sleepy, I'm awake sitting up in bed in the dark. I'm often like this. Even fall asleep sitting up.
Our son started the 8th grade on Monday. The girls are doing well.
The man has been back to work for a month now. A bit of separation anxiety still exists, but unlike my friend who recently lost her Master without warning, mine is coming home for as long as the good Lord allows.
I think about my friend and how she's coping. It brings back memories of my own Master's heart attack at his age of 38 at the time. Fear has continued to run through me ever since. He still has 2 stents in his heart. But I have him and I'm grateful.
I pray my friend has a bright and happy future ahead of her.
I haven't done too much more with my other xxx blog or any of them really.
Keeping dishes washed and man toilet clean is chore enough most days. Cooking meals are exhausting my limbs. Pain over flows and I have a hard time catching up.
I've lost a few pounds, but worry the return to taking Neurontin will put it back on.
In June we celebrated 24 years together, on the 14th (a few days ago) we quietly celebrated 23 married. It's sometimes hard to believe we're heading on 25 years.
I've belonged to him 7 years longer than I ever belonged my parents.
One thing I have become some what addicted to is the series Lost. Been watching it on Netflix starting from 2004 finally up to 2006. A few episodes an evening when able. Yep, I'm stuck!
Wishing you all well
Until next time..
Being busy poops me out, doing nothing poops me out.
I was chosen to participate in a Neuropathic Pain Study. Originally I sent my fax in to late via the man and having to rely on him. I was put on the waiting list. After replying that I was still interested if a spot opened, I was emailed back within days that there was an opening.
This is a 6 week study. I'm hoping it helps me as well as the millions who suffer or struggle with neuropathic pain and similar conditions or disorders.
The last radio show went great! I was low in the beginning and went from head set to hand set mid show. It did go well after all. You may have to turn me up in the beginning. The show was on Mirror Therapy and Desensitization.
Here it is nearly 4:00 a.m and while I'm sleepy, I'm awake sitting up in bed in the dark. I'm often like this. Even fall asleep sitting up.
Our son started the 8th grade on Monday. The girls are doing well.
The man has been back to work for a month now. A bit of separation anxiety still exists, but unlike my friend who recently lost her Master without warning, mine is coming home for as long as the good Lord allows.
I think about my friend and how she's coping. It brings back memories of my own Master's heart attack at his age of 38 at the time. Fear has continued to run through me ever since. He still has 2 stents in his heart. But I have him and I'm grateful.
I pray my friend has a bright and happy future ahead of her.
I haven't done too much more with my other xxx blog or any of them really.
Keeping dishes washed and man toilet clean is chore enough most days. Cooking meals are exhausting my limbs. Pain over flows and I have a hard time catching up.
I've lost a few pounds, but worry the return to taking Neurontin will put it back on.
In June we celebrated 24 years together, on the 14th (a few days ago) we quietly celebrated 23 married. It's sometimes hard to believe we're heading on 25 years.
I've belonged to him 7 years longer than I ever belonged my parents.
One thing I have become some what addicted to is the series Lost. Been watching it on Netflix starting from 2004 finally up to 2006. A few episodes an evening when able. Yep, I'm stuck!
Wishing you all well
Until next time..
Thursday, August 05, 2010
Mirror Therapy (on the air live tomorrow morning)
Hi everyone
Please join me tomorrow morning August 6th, 2010 at 9:00 a.m PST, 11:00 a.m Central and 12:00 p.m noon EST
For a show on Mirror Therapy and desensitization. I'll be your guest with Host Trudy Thomas http://www.blogtalkradio.com/thematrix777
A chat room is also available during the show.
The show is a live one hour segment (but can be downloaded after the show airs or played directly from the site) You can call in and ask questions too Call in number 347-884-9691
We ask that you bring a mirror, full length for lower extremity or a table top for upper extremity RSD. Bring cotton or silk for desensitization. This is not a requirement, but helpful.
Privileged once again to be the guest speaker on the Living with RSD radio show tomorrow morning discussing/teaching Mirror Therapy and desensitization. My 2nd time on the air as a guest, the last time as co host. The targeted audience is for those with disabilities, in chronic pain or who've lost the use of their limbs or ROM.
Until next time...
Saturday, July 24, 2010
New Adult Blog
Adult related. Add if you like. Not intended for the weak. Explicit links included. salacioussurrender.blogspot.com
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Keeping as busy as able. Working various venues, and then pooping out again. The mans new work schedule will take a lot of getting use to and difficult to keep up on anything besides him and the home.
On days I couldn't manage being up and about, he would help with some dinners at times. This isn't going to happen any more, nor should it, so there may be more nights the rest of the home are on their own. I don't like that. I don't even like knowing that. It makes me feel terrible. Still not sure how it's going to work out. Pushing myself too much, puts me down for days. There isn't any balance.
We did go to the lake a week or so ago for a few hours. Had a great time. I eased myself into the water as most of us do to get use to it. I finally fully submerged a couple of times. But my knee to my toes on the right side still feel like it's in ice water. A painful feeling. The fire and ice burning is awful.
My dad's had even more surgeries since his motor cycle accident a couple of months ago, staph infections run through him and he's just not well at all. He's now going back to a rehab facility for another 5-7 weeks. Mom continued to work and stay with him at the hospital. I don't think she can stay with him at the rehab. All we can do is keep praying.
I'm not sure how often I'll check into this blog, I'm overloaded, but there's a reason to the other. I'm leaving the domain of same name pointed to my toy store for now and where it's been for over a year or more, the new blog is for what I had prior to losing a site/directory I had a few years ago. If I get it back to what it was, if ever, I'll make the blog the domain and list the toy store instead.
Warm wishes
Until next time...
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Keeping as busy as able. Working various venues, and then pooping out again. The mans new work schedule will take a lot of getting use to and difficult to keep up on anything besides him and the home.
On days I couldn't manage being up and about, he would help with some dinners at times. This isn't going to happen any more, nor should it, so there may be more nights the rest of the home are on their own. I don't like that. I don't even like knowing that. It makes me feel terrible. Still not sure how it's going to work out. Pushing myself too much, puts me down for days. There isn't any balance.
We did go to the lake a week or so ago for a few hours. Had a great time. I eased myself into the water as most of us do to get use to it. I finally fully submerged a couple of times. But my knee to my toes on the right side still feel like it's in ice water. A painful feeling. The fire and ice burning is awful.
My dad's had even more surgeries since his motor cycle accident a couple of months ago, staph infections run through him and he's just not well at all. He's now going back to a rehab facility for another 5-7 weeks. Mom continued to work and stay with him at the hospital. I don't think she can stay with him at the rehab. All we can do is keep praying.
I'm not sure how often I'll check into this blog, I'm overloaded, but there's a reason to the other. I'm leaving the domain of same name pointed to my toy store for now and where it's been for over a year or more, the new blog is for what I had prior to losing a site/directory I had a few years ago. If I get it back to what it was, if ever, I'll make the blog the domain and list the toy store instead.
Warm wishes
Until next time...
Saturday, June 26, 2010
Medical (Medicinal) Marijuana Defense Trial
Jeffrey's Story- Medical (Medicinal) Marijuana Defense Trial
http://www.crpsadvisory.com/jeffreysstory_introduction.html
For more information click on the related tabs via the link above.
A video presentation is coming soon.
If you support Jeffrey please sign the guest book and let him know.
Any further comments and thoughts are welcomed also.
We are much safer in California, we can get legal prescriptions for cannabis to purchase through various smoke shops. possess eight ounces of dried cannabis, six mature plants, or up to twelve immature plants minimally. Some counties allow even more.
Jeffrey is from Florida and the laws are so tight that 1 plant is too much. From my source at: http://norml.org/index.cfm?wtm_view=&Group_ID=4530.It he's looking at 5-15 easy.
Harsh for trying to be a survivor rather than a sufferer.
Some might say he should have known better, but drastic times call for drastic measures...
As I've said before..
It really hurts to hurt.
Until next time...
http://www.crpsadvisory.com/jeffreysstory_introduction.html
For more information click on the related tabs via the link above.
A video presentation is coming soon.
If you support Jeffrey please sign the guest book and let him know.
Any further comments and thoughts are welcomed also.
We are much safer in California, we can get legal prescriptions for cannabis to purchase through various smoke shops. possess eight ounces of dried cannabis, six mature plants, or up to twelve immature plants minimally. Some counties allow even more.
Jeffrey is from Florida and the laws are so tight that 1 plant is too much. From my source at: http://norml.org/index.cfm?wtm_view=&Group_ID=4530.It he's looking at 5-15 easy.
Harsh for trying to be a survivor rather than a sufferer.
Some might say he should have known better, but drastic times call for drastic measures...
As I've said before..
It really hurts to hurt.
Until next time...
Thursday, June 10, 2010
Exhaustion Runs Through Me
I've been so tired. I have no energy. The pain drains me entirely. I'm often in a daze. I hear voices, but they seem so far away, even when they're just a whisper away. Conversations, television, etc.
I've been asked to co host the Living with RSD radio show beginning Friday June 18 @ 9:00 a.m. PST Guest is a pain management physician with further specialties from NV. while the current co host takes some medical leave days. I'm excited. A little nervous, of course. The shows are live and not scripted. The show I was on last month turned out well. After a few shows I should be fine. The host takes care of nearly all the interviewing, I'll chime in as necessary. I'll be managing the chat room as well. The host is wonderful. She's done well to bring so much information to the masses. Couldn't be happier to be apart of it.
I'm helping a man promote awareness for his "first medical (marijuana) defense trial". Advocating the medicinal use for chronic pain. He's the one facing trial. His story can be found here http://www.CRPSAdvisory.com/JeffreysStory There will be more to come.
I've been really busy. Major tool for chronic pain is distraction.
Been trying to take care of the men of the home, but it's getting harder and harder. My body is so weak. I can get dinner's prepared, cooked and served 3-4 days a week at best. For every day up, it's still the next down. Sometimes I can go 2-3 days in a row, but then a hard crash. Just wish it was a crash that came with sleep. Solid, undisturbed sleep. Never the case. It's a cycle I just can't break. My body can't take it. I have so much guilt for not being able to do more physically. While I know it's not my fault it doesn't make it easier. I care a lot.
I want to do more, I want to jump and up and down, dance, or ski, It hurts like hell to just stand, and when I do, I have to raise my spine slowly up into proper standing position, or my back and spine seizes. Taking just a few steps is sometimes unbearable.
I try to smile often. I love all that I do to help others and all that I advocate for. I wish I had more left in me to do even more. It makes me happy and gives me a sense of purpose. My calling must be in here somewhere. I have to pace my time and effort carefully.
I may need to return to one of the medications I gave up last summer. I made it a year! It's been a really hard year. I did it!
My pain feels like a blow torch has been set to my flesh and the iciest of ice picks have been thrust through me. Continuous, an intense constant ache right down to the bones. Body seizures, jerking hard with no warning, just to cease as quickly as they occur.
Having to tell the one you love to stop a tender caress is as painful emotionally as it is physically. It's really sad.
I can feel myself slipping faster and faster, but there's no rock bottom to crash into, I have to catch myself before I fall. Me! I have to have the will fly upward and so much more than that the determination to go on.
I keep telling myself "pain can't break me". Oh but it tries. I no longer pray for a cure. I pray for calm and ease. Inner peace. I'm really not a sufferer, I am a survivor.
It's all so bittersweet
Until next time...
I've been asked to co host the Living with RSD radio show beginning Friday June 18 @ 9:00 a.m. PST Guest is a pain management physician with further specialties from NV. while the current co host takes some medical leave days. I'm excited. A little nervous, of course. The shows are live and not scripted. The show I was on last month turned out well. After a few shows I should be fine. The host takes care of nearly all the interviewing, I'll chime in as necessary. I'll be managing the chat room as well. The host is wonderful. She's done well to bring so much information to the masses. Couldn't be happier to be apart of it.
I'm helping a man promote awareness for his "first medical (marijuana) defense trial". Advocating the medicinal use for chronic pain. He's the one facing trial. His story can be found here http://www.CRPSAdvisory.com/JeffreysStory There will be more to come.
I've been really busy. Major tool for chronic pain is distraction.
Been trying to take care of the men of the home, but it's getting harder and harder. My body is so weak. I can get dinner's prepared, cooked and served 3-4 days a week at best. For every day up, it's still the next down. Sometimes I can go 2-3 days in a row, but then a hard crash. Just wish it was a crash that came with sleep. Solid, undisturbed sleep. Never the case. It's a cycle I just can't break. My body can't take it. I have so much guilt for not being able to do more physically. While I know it's not my fault it doesn't make it easier. I care a lot.
I want to do more, I want to jump and up and down, dance, or ski, It hurts like hell to just stand, and when I do, I have to raise my spine slowly up into proper standing position, or my back and spine seizes. Taking just a few steps is sometimes unbearable.
I try to smile often. I love all that I do to help others and all that I advocate for. I wish I had more left in me to do even more. It makes me happy and gives me a sense of purpose. My calling must be in here somewhere. I have to pace my time and effort carefully.
I may need to return to one of the medications I gave up last summer. I made it a year! It's been a really hard year. I did it!
My pain feels like a blow torch has been set to my flesh and the iciest of ice picks have been thrust through me. Continuous, an intense constant ache right down to the bones. Body seizures, jerking hard with no warning, just to cease as quickly as they occur.
Having to tell the one you love to stop a tender caress is as painful emotionally as it is physically. It's really sad.
I can feel myself slipping faster and faster, but there's no rock bottom to crash into, I have to catch myself before I fall. Me! I have to have the will fly upward and so much more than that the determination to go on.
I keep telling myself "pain can't break me". Oh but it tries. I no longer pray for a cure. I pray for calm and ease. Inner peace. I'm really not a sufferer, I am a survivor.
It's all so bittersweet
Until next time...
Thursday, May 27, 2010
On the Air Live May 28th 12:00 p.m EST
It's the evening before my live radio event. I'll be on the air tomorrow morning at 12:00 p.m EST, 'course it will be 9:00 a.m for me (PST).
I'll surely be waking up with Folgers in my cup. I'm really excited about doing the show. I've already been asked to do another and am working on making that happen. It will be a how-to on Mirror Therapy. Listener's will be asked to have a mirror handy. Fun and informative all at once.
Tomorrow's show is on Functional Restoration and the pain patient. I couldn't be more happy to have been chosen as guest speaker.
I'm not listening the stations name here as not to contribute to speculation being that this specific blog is both adult related and health related. Though it has been posted several other places and of course will be given out if asked for.
In conjunction with the station I wrote a preview of the show and what will be discussed. At first I thought I wouldn't make it through an hour, yet there's so much information, an hour may not be enough.
Functional Restoration and the Pain Patient
by Twinkle VanFleet
written for Living With RSD Radio
And Compass Center for Restoration
We all seek pain relief. Aside from a cure, maintaining our pain levels to a tolerable degree is the next best thing. Medications assist and can cause additional problems. After awhile we can become immune needing a higher and higher dose just to get the same relief as when we started. If a medication isn't working, there is no benefit to taking it and one should discontinue. Medication should only be used if it actually eases and manages the pain.
There are several other things we can do to minimize our pain and lessen the intensity for as long as a pain pill might. And maybe even feel much better doing it.
Biofeedback, breathing, meditation, relaxation, yoga, pacing, changing the way we think, self-talk. pacing activities, shifting focus, visual imagery, expressing emotions, practicing appreciation, nutrition, having a flare-up protocol (duration, frequency, intensity), exercise, modalities, distraction, coping beliefs, desensitization, yoga, mirror therapy and more.
Goal Setting.
Choose a "directional goal" for the day.
Choose a "physical goal" for the day.
Choose a "memory goal" for the day.
Record both Physical and emotional responses to pain (0-10)
When setting a goal, never say "I'll try", but instead, "I will"
Don't say "I'll try to do the dishes", instead, I will do the dishes".
Thinking positive keeps us in a positive state of mind.
When we learn to get our emotional responses to our pain down it will decrease our physical response. Stress, fatigue and depression adds to our pain. We can learn to alter the way we feel.
Crucial to a CRPS patient is the ability to pace oneself throughout the day. It's not good for a CRPS patient to have a mindset of "I use to spend an hour at the gym 3 times a week. If I do the same now, I'll get better. This type of thinking is asking for a flare up. Instead, set your mind at "I will practice several routines for small times but over the course of the day". This will help prevent flare ups.
We can't dwell on who we use to be, all those things we use to do. Many of us remain locked in the bubble of our past. We feel we lost everything, nothing is the same, our lives are over.
We can learn to live a fulfilling life despite the pain. We have to learn to embrace our new selves and find happiness. Focus on the good and let go of the bad. Continuing to remain focused on all that was is stressful. Stress invites additional pain.
Practicing appreciation
Due to our beliefs we develop a pattern of "automatic thoughts" which often occur outside our conscious awareness. The only way we know "why we are thinking what we are thinking" is to develop awareness about our cognitive (thinking) process.
Research has shown that people are more successful at comping with chronic pain when they have clear goals and direct there attention and efforts toward "what to do" or "what is possible" instead of "what not to do" or "what is possible". This does not suggest a person should be in denial about one's limitations. Good awareness and the development of realistic and measurable goals are critical to success.
Appreciation- Recognition of the quality, value, significance, or magnitude of people and things.
Optimism-- Tendency to expect the best possible outcome or dwell on the mot hopeful aspects of the situation. Optimism has been associated with an enhanced immune system. A pessimistic attitude has been associated with depression and generally poor health. Pessimists tend to view events that happens to them as stable (this always happens to me). Optimists view events a temporal (just because it happened once does not mean it will happen again), specific (I am having problems learning to pace myself) and external (other people are responsible for their behaviors, I'm responsible for mine).
Pain--->Guarding or Protecting: Pattern/Less Use--->Fewer Normal movement signals to spinal cord and brain--->Tissues begin to redesign themselves including: muscle wasting/shortening, out of control swelling, increased sensitivity of local temperature and touch receptors--->Decreased movement/use, decreased socialization, decreased psychological coping.
This pattern created several changes to the body that ultimately serves to make the disease worse, in a never ending cycle of pain.
Experience reflects our Beliefs, our beliefs reflect our Thoughts, our thoughts reflect our Emotions and our emotions reflect our Behavior.
Changing the way we think (if negative) is imperative to becoming survivors, rather than sufferers.
Exercise and Physical Therapy- This doesn't need to be a workout, again pacing is our friend. We will not hurt ourselves worse. CRPS patients have to exercise. Unless there is other damage unrelated to CRPS, we will not damage ourselves further.
Example- If someone has guarded their ankle to the point of losing use, attempting 3 ankle raises is good for us. If CRPS is in our fingers, wiggling them is okay. Same with our toes or any other part of the body. This is not to say it isn't going to hurt. We have to move it or lose it.
Basic Yoga positions can help and bring a calm and peaceful state of mind at the same time.
Having a routine is important. It takes 3 weeks to make or break a habit.
Pain patients often have a terrible time sleeping. Sleeping days, and awake nights, no pattern. Our internal clocks stop working. It can be reset by waking at sunrise and settling down to sleep with the sunset.
Don't isolate, be around other's as much as possible. We all need our quiet time, yet let it be just that. Our bedroom's are for sleep. If we spend all day in our room it can cause us sleeping problems even if we already have them.
Some of us wait and wait for a cure and then look back 10 years to find it hasn't come yet just to realize 10 years has past them by.
Frustrations, Worker's Compensation, insurance companies, denials and delays, lack of answers, the feeling of an uncertain future all cause our emotions to be unsettling.
We have to take primary responsibility for our own pain. We have to want to break the cycles that keep us from moving forward. Happiness is found in accomplishment. Success come from commitment.
Breathe!
All things are possible.
Until next time...
I'll surely be waking up with Folgers in my cup. I'm really excited about doing the show. I've already been asked to do another and am working on making that happen. It will be a how-to on Mirror Therapy. Listener's will be asked to have a mirror handy. Fun and informative all at once.
Tomorrow's show is on Functional Restoration and the pain patient. I couldn't be more happy to have been chosen as guest speaker.
I'm not listening the stations name here as not to contribute to speculation being that this specific blog is both adult related and health related. Though it has been posted several other places and of course will be given out if asked for.
In conjunction with the station I wrote a preview of the show and what will be discussed. At first I thought I wouldn't make it through an hour, yet there's so much information, an hour may not be enough.
Functional Restoration and the Pain Patient
by Twinkle VanFleet
written for Living With RSD Radio
And Compass Center for Restoration
We all seek pain relief. Aside from a cure, maintaining our pain levels to a tolerable degree is the next best thing. Medications assist and can cause additional problems. After awhile we can become immune needing a higher and higher dose just to get the same relief as when we started. If a medication isn't working, there is no benefit to taking it and one should discontinue. Medication should only be used if it actually eases and manages the pain.
There are several other things we can do to minimize our pain and lessen the intensity for as long as a pain pill might. And maybe even feel much better doing it.
Biofeedback, breathing, meditation, relaxation, yoga, pacing, changing the way we think, self-talk. pacing activities, shifting focus, visual imagery, expressing emotions, practicing appreciation, nutrition, having a flare-up protocol (duration, frequency, intensity), exercise, modalities, distraction, coping beliefs, desensitization, yoga, mirror therapy and more.
Goal Setting.
Choose a "directional goal" for the day.
Choose a "physical goal" for the day.
Choose a "memory goal" for the day.
Record both Physical and emotional responses to pain (0-10)
When setting a goal, never say "I'll try", but instead, "I will"
Don't say "I'll try to do the dishes", instead, I will do the dishes".
Thinking positive keeps us in a positive state of mind.
When we learn to get our emotional responses to our pain down it will decrease our physical response. Stress, fatigue and depression adds to our pain. We can learn to alter the way we feel.
Crucial to a CRPS patient is the ability to pace oneself throughout the day. It's not good for a CRPS patient to have a mindset of "I use to spend an hour at the gym 3 times a week. If I do the same now, I'll get better. This type of thinking is asking for a flare up. Instead, set your mind at "I will practice several routines for small times but over the course of the day". This will help prevent flare ups.
We can't dwell on who we use to be, all those things we use to do. Many of us remain locked in the bubble of our past. We feel we lost everything, nothing is the same, our lives are over.
We can learn to live a fulfilling life despite the pain. We have to learn to embrace our new selves and find happiness. Focus on the good and let go of the bad. Continuing to remain focused on all that was is stressful. Stress invites additional pain.
Practicing appreciation
Due to our beliefs we develop a pattern of "automatic thoughts" which often occur outside our conscious awareness. The only way we know "why we are thinking what we are thinking" is to develop awareness about our cognitive (thinking) process.
Research has shown that people are more successful at comping with chronic pain when they have clear goals and direct there attention and efforts toward "what to do" or "what is possible" instead of "what not to do" or "what is possible". This does not suggest a person should be in denial about one's limitations. Good awareness and the development of realistic and measurable goals are critical to success.
Appreciation- Recognition of the quality, value, significance, or magnitude of people and things.
Optimism-- Tendency to expect the best possible outcome or dwell on the mot hopeful aspects of the situation. Optimism has been associated with an enhanced immune system. A pessimistic attitude has been associated with depression and generally poor health. Pessimists tend to view events that happens to them as stable (this always happens to me). Optimists view events a temporal (just because it happened once does not mean it will happen again), specific (I am having problems learning to pace myself) and external (other people are responsible for their behaviors, I'm responsible for mine).
Pain--->Guarding or Protecting: Pattern/Less Use--->Fewer Normal movement signals to spinal cord and brain--->Tissues begin to redesign themselves including: muscle wasting/shortening, out of control swelling, increased sensitivity of local temperature and touch receptors--->Decreased movement/use, decreased socialization, decreased psychological coping.
This pattern created several changes to the body that ultimately serves to make the disease worse, in a never ending cycle of pain.
Experience reflects our Beliefs, our beliefs reflect our Thoughts, our thoughts reflect our Emotions and our emotions reflect our Behavior.
Changing the way we think (if negative) is imperative to becoming survivors, rather than sufferers.
Exercise and Physical Therapy- This doesn't need to be a workout, again pacing is our friend. We will not hurt ourselves worse. CRPS patients have to exercise. Unless there is other damage unrelated to CRPS, we will not damage ourselves further.
Example- If someone has guarded their ankle to the point of losing use, attempting 3 ankle raises is good for us. If CRPS is in our fingers, wiggling them is okay. Same with our toes or any other part of the body. This is not to say it isn't going to hurt. We have to move it or lose it.
Basic Yoga positions can help and bring a calm and peaceful state of mind at the same time.
Having a routine is important. It takes 3 weeks to make or break a habit.
Pain patients often have a terrible time sleeping. Sleeping days, and awake nights, no pattern. Our internal clocks stop working. It can be reset by waking at sunrise and settling down to sleep with the sunset.
Don't isolate, be around other's as much as possible. We all need our quiet time, yet let it be just that. Our bedroom's are for sleep. If we spend all day in our room it can cause us sleeping problems even if we already have them.
Some of us wait and wait for a cure and then look back 10 years to find it hasn't come yet just to realize 10 years has past them by.
Frustrations, Worker's Compensation, insurance companies, denials and delays, lack of answers, the feeling of an uncertain future all cause our emotions to be unsettling.
We have to take primary responsibility for our own pain. We have to want to break the cycles that keep us from moving forward. Happiness is found in accomplishment. Success come from commitment.
Breathe!
All things are possible.
Until next time...
Friday, May 14, 2010
A song, Please listen- RSD A Mystery
"RSD A Mystery"
By KJ Reimensnyder-Wagner
By KJ Reimensnyder-Wagner
Listen to "RSD A Mystery"
Download Windows Media player (free)
No one knows the pain I feel
No one knows, it seems unreal
Sometimes I hope, I want to believe
That life goes on without disease
Oh, not so very long ago
I hurt my leg and did not know
Until my body refused to mend
And turned instead to the hell I'm in
(Chorus)
RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free
From RSD, RSD
Skin will swell, appearing tight
And blister sores, some hide with fright
Five million souls and more feel pain
Like pokers hot, you go insane.
(Chorus)
RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free
From RSD, RSD
(Bridge)
I want a hug, but please stay away
I want you close but it hurts that way
Tender moments are what I miss
But RSD's robbed me of this
Many colors have adorned my skin
When breezes blow, I hide within
But if I stay focused on what is right
I beat depression; I win this fight
(Chorus)
Oh RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free
From RSD, RSD
I wonder why this was meant to be
Was I put here so I could speak?
Oh, put yourself inside my shoes
Let's work to find insightful news
(Final Chorus)
Yes, RSD's a mystery
But I'm not looking for sympathy
Let's set our sights, yes, you and me
Let's find that cure for RSD
(repeat)
Yes, we'll have the cure for RSD!
---
Until next time....
Tuesday, May 04, 2010
Pain Pain Go Away...
It's been awhile since I've written. Been having terrible pain in my back/spine/hip and butt.
It was so bad I upped my last pain management appointment to bypass going to the ER. They gave me a shot of Toradol which barely took the edge off. A couple of days later they prescribed me a Medrol pack. A medicine one takes 6 of the first day, then 5, 4, 3 and down until completed.
During this time the man went out of town for 2 days on a previous commitment. He would have stayed home but I didn't want him to cancel.
I was watched over by the other man of the house and our son.
I was forced to resort to the use of my walker... and for days I needed assistance just getting to my feet. I couldn't stand straight or raise my back up to it's proper position. I could only walk slouched over for days. Finally I was able to raise, but oh my did it hurt. It began to ease and within a day or so it was back.
I've been stressing over the fact that I haven't been able to do dinners and chores like I want to. A couple of nights a week the men fend for themselves. It really hurts my feelings. I feel worthless. I know they understand. If they didn't I would be forced, but forcing me wouldn't get the job done either. I'm just grateful I'm not put down over it.. I put myself down enough.
Dad finally got out of the hospital just days ago. He beat a staff infection from the first hospital. He was in a second for rehab, spent time there and was able to go home. He has a long road of recovery ahead of him. Am thankful he made it home.
I was asked to be a guest on an online radio show... Living with RSD.. and I'll be speaking about functional restoration.. will let those interested know when my show date will be. I may not post it here, instead privately for privacy reasons and to protect the station from any spam or unwanted advertising since my blog is all of me. Some things should be separated.
I was honored to be asked and chosen for this. It's an hour long segment and live. People can call in and ask questions during the show. For those who can't listen live, it will be archived and downloadable.
I don't have any other doctor other than my pain manager. Not even a primary physician. More must be going on... and part of me doesn't want to know while the other part tells me to find out or else.
Pain is a sign of something wrong.. it's our warning that there is.
I know my body enough to distinguish Fibromyalgia pain from CRPS pain. Fibro pain is a result of fatigue and stress, muscle pain. CRPS pain burns and never lets up.
Some think Fibro and CRPS are the same. They are not. Similarities exist, but major differences.
My left side has been hurting even more trying to compensate for the lack of my right.
My last block did help the pain in my knee.. phew! It's still helping it, but gradually wearing off. It returned to the rest of the right side soon after. I did get a decent week. I know for sure I was blocked at L2 and L4, but not entirely sure the other areas.
Blocks are taking a chance...sometimes they help a little, sometimes not.
After the 5 day Medrol pack, I got a break in pain for a time being enough to clean both bathrooms, the kitchen is rarely dirty and even though I stressed over it, its' been kept up.
The man or son vacuums and everyone takes care of their personal areas which is of a great help. Plus it's there own areas which is not by business to mess with anyhow.
The garbage is our sons job though I often pull it up and replace the bag. He gets behind on it. I don't like nagging and end up doing it at times and so I do it myself except for taking it out.
Ugh summer is near. I can't handle the heat. It makes my skin feel like it's being bitten. I'm not able to wear too much clothing as is.. I worry about the heat and not wanting to wear any.
But I have to. (mostly)
I am looking forward to not feeling the added pain from winters barometric changes.
All I can do is make it from day to day.. moment by moment really, nothing is consistent but pain.
I try to keep smiling.. and often do.
I may have to go back on previous meds and am trying not to go backwards.. in many ways it's inevitable. I can't stay in bed all day. Getting up is harder and harder plus I miss out on living and seeing the sun shine or the rain pour.
I have absolutely no energy and it can't be my meds, I don't take enough to keep me sleepy.
I feel so behind...
but I haven't let go of hope.
Until next time...
It was so bad I upped my last pain management appointment to bypass going to the ER. They gave me a shot of Toradol which barely took the edge off. A couple of days later they prescribed me a Medrol pack. A medicine one takes 6 of the first day, then 5, 4, 3 and down until completed.
During this time the man went out of town for 2 days on a previous commitment. He would have stayed home but I didn't want him to cancel.
I was watched over by the other man of the house and our son.
I was forced to resort to the use of my walker... and for days I needed assistance just getting to my feet. I couldn't stand straight or raise my back up to it's proper position. I could only walk slouched over for days. Finally I was able to raise, but oh my did it hurt. It began to ease and within a day or so it was back.
I've been stressing over the fact that I haven't been able to do dinners and chores like I want to. A couple of nights a week the men fend for themselves. It really hurts my feelings. I feel worthless. I know they understand. If they didn't I would be forced, but forcing me wouldn't get the job done either. I'm just grateful I'm not put down over it.. I put myself down enough.
Dad finally got out of the hospital just days ago. He beat a staff infection from the first hospital. He was in a second for rehab, spent time there and was able to go home. He has a long road of recovery ahead of him. Am thankful he made it home.
I was asked to be a guest on an online radio show... Living with RSD.. and I'll be speaking about functional restoration.. will let those interested know when my show date will be. I may not post it here, instead privately for privacy reasons and to protect the station from any spam or unwanted advertising since my blog is all of me. Some things should be separated.
I was honored to be asked and chosen for this. It's an hour long segment and live. People can call in and ask questions during the show. For those who can't listen live, it will be archived and downloadable.
I don't have any other doctor other than my pain manager. Not even a primary physician. More must be going on... and part of me doesn't want to know while the other part tells me to find out or else.
Pain is a sign of something wrong.. it's our warning that there is.
I know my body enough to distinguish Fibromyalgia pain from CRPS pain. Fibro pain is a result of fatigue and stress, muscle pain. CRPS pain burns and never lets up.
Some think Fibro and CRPS are the same. They are not. Similarities exist, but major differences.
My left side has been hurting even more trying to compensate for the lack of my right.
My last block did help the pain in my knee.. phew! It's still helping it, but gradually wearing off. It returned to the rest of the right side soon after. I did get a decent week. I know for sure I was blocked at L2 and L4, but not entirely sure the other areas.
Blocks are taking a chance...sometimes they help a little, sometimes not.
After the 5 day Medrol pack, I got a break in pain for a time being enough to clean both bathrooms, the kitchen is rarely dirty and even though I stressed over it, its' been kept up.
The man or son vacuums and everyone takes care of their personal areas which is of a great help. Plus it's there own areas which is not by business to mess with anyhow.
The garbage is our sons job though I often pull it up and replace the bag. He gets behind on it. I don't like nagging and end up doing it at times and so I do it myself except for taking it out.
Ugh summer is near. I can't handle the heat. It makes my skin feel like it's being bitten. I'm not able to wear too much clothing as is.. I worry about the heat and not wanting to wear any.
But I have to. (mostly)
I am looking forward to not feeling the added pain from winters barometric changes.
All I can do is make it from day to day.. moment by moment really, nothing is consistent but pain.
I try to keep smiling.. and often do.
I may have to go back on previous meds and am trying not to go backwards.. in many ways it's inevitable. I can't stay in bed all day. Getting up is harder and harder plus I miss out on living and seeing the sun shine or the rain pour.
I have absolutely no energy and it can't be my meds, I don't take enough to keep me sleepy.
I feel so behind...
but I haven't let go of hope.
Until next time...
Monday, April 19, 2010
Dad's Motorcycle Accident
On April 14th I was awoken to a call from my mom. She said "Hi, honey" and right away I knew there was something wrong. In my half awake, partially comatose state, I could sense something different in her voice and in just those two words.
My dad (step) had been in a bad motorcycle accident. He was in critical condition. They thought he had punctured his Aorta, kidneys and so forth. He has a sliver fracture at his spine.
It was his birthday.
On Saturday, the 17th, he was fitted for outer braces the second option to allow him to heal so the fracture doesn't move and paralyze him. The other option was surgery where a steel brace would be implanted on both sides.
I was so scared. Mom married this man, who happened to be her high school sweet heart 7 years after I closed my own dad's eyes who died of lung cancer in my husband's home in 1991. I took care of my dad while he passed. He came to our home to pass on, instead of remaining in the hospital to do it.
I took on all the responsibilities at 22, married 5 years, 2 daughters and mom came with. My husband and his father took care of the funeral and the military salutes. Bless my father in law who passed on a year after, an mom in law who passed on a year after that.
Our children had one grandparent left and that was my mom. I continued to care for her for years until we got her an apartment of her own a block down the street to try to live again independently.
They were married 25 years.
A few years after, she had a dream one night about the old days and woke with a name on her mind. Her old boyfriend, Don. She contacted his mother who was in Sacramento and from there she met up wit him again.
To make a long story shorter they were married in 1998. Yesterday was their anniversary.
When I first found out of the accident, I was so fearful. I worried about mom needing support, I prayed he wouldn't die, I couldn't even get there.
My immediate family other than my man, and children are in Georgia.
Not only would there have been an issue with monies, but of traveling. Scraping up the funds for 1 round trip ticket to Atlanta would be one thing, transporting myself would be another. I would be wheelchair bound.. all I could think of was.... how? The next thought was to take my son with as he grew up with my disabilities and could care for me even at 13. But then... more $$$.
I was so relieved to find dad's been alert and even playful at times, ornery too.
Mom and dad both work. At the same store. Dad retired years ago and has that income, but now may be forced to retire again.
He's still in the hospital and it will be a long recovery and life will be different.
The Harley's been destroyed. A freak accident. He avoided hitting a critter in the road which was the cause of losing control of the bike.
I just hope all stays the same or gets better... it's still a critical time of knowing all for sure.
Until next time...
My dad (step) had been in a bad motorcycle accident. He was in critical condition. They thought he had punctured his Aorta, kidneys and so forth. He has a sliver fracture at his spine.
It was his birthday.
On Saturday, the 17th, he was fitted for outer braces the second option to allow him to heal so the fracture doesn't move and paralyze him. The other option was surgery where a steel brace would be implanted on both sides.
I was so scared. Mom married this man, who happened to be her high school sweet heart 7 years after I closed my own dad's eyes who died of lung cancer in my husband's home in 1991. I took care of my dad while he passed. He came to our home to pass on, instead of remaining in the hospital to do it.
I took on all the responsibilities at 22, married 5 years, 2 daughters and mom came with. My husband and his father took care of the funeral and the military salutes. Bless my father in law who passed on a year after, an mom in law who passed on a year after that.
Our children had one grandparent left and that was my mom. I continued to care for her for years until we got her an apartment of her own a block down the street to try to live again independently.
They were married 25 years.
A few years after, she had a dream one night about the old days and woke with a name on her mind. Her old boyfriend, Don. She contacted his mother who was in Sacramento and from there she met up wit him again.
To make a long story shorter they were married in 1998. Yesterday was their anniversary.
When I first found out of the accident, I was so fearful. I worried about mom needing support, I prayed he wouldn't die, I couldn't even get there.
My immediate family other than my man, and children are in Georgia.
Not only would there have been an issue with monies, but of traveling. Scraping up the funds for 1 round trip ticket to Atlanta would be one thing, transporting myself would be another. I would be wheelchair bound.. all I could think of was.... how? The next thought was to take my son with as he grew up with my disabilities and could care for me even at 13. But then... more $$$.
I was so relieved to find dad's been alert and even playful at times, ornery too.
Mom and dad both work. At the same store. Dad retired years ago and has that income, but now may be forced to retire again.
He's still in the hospital and it will be a long recovery and life will be different.
The Harley's been destroyed. A freak accident. He avoided hitting a critter in the road which was the cause of losing control of the bike.
I just hope all stays the same or gets better... it's still a critical time of knowing all for sure.
Until next time...
Monday, April 12, 2010
3 Weeks Post Pain Block
I had a really good 4 days of pain relief. The pain crept back up so quickly and I think the change in the barometric pressure added to it again.
My body tells me when it's about to rain. It goes crazy days before. I've been pushing myself to have some sort of routine. At best it's dinner for the men each night. I'm not very active at all, my legs only have so much time in a day to keep me up. I plan that up time for preparing supper. I serve them their plates, wash up the dishes and I'm down again. Sometimes I eat, sometimes I don't.
This illness continues to suck the life out of me. It's not just the pain, no energy at all.
I'm often back in bed right after dinner is taken care of. Try to relax to a little tv. Wait and hope to fall asleep and stay asleep, but I'm lucky to get 2 hours at a time.
Sometimes I try to knock myself out with OTC pm meds. (Tylenol PM, etc) I just don't stay asleep. I can never get comfortable.
My body seizers often, myoclonic jerks partially due to Dystonia which I ended up with secondary to CRPS. It's like some one pushed me hard, jerked me violently. I've hit myself in the face before when my shoulders and arms jerked. It's scary.
They are completely uncontrollable. Never know when it's coming. It's all night long and only recently starting when I'm upright or trying to walk. It's usually always been in a laying position.
Every so often, I'm found sitting up in bed in indian style, but asleep. It's the only way to ease the jerking. I assume that's why I do it. They'll let me know to lay back down and I do, but sometimes I do it again not knowing I'm doing it. I find myself sitting up all the time.
I worry over it, but what can a girl do?
I don't use my wheel chair in the home. I use my legs. But it's getting harder and harder. I have to pace myself.
Really that's the only reason they get dinner... pacing. If I over do it, we all lose out.
Our daughters have been moved out for about 6 weeks now I think. I'm the sole female here. 2 men, the son and I.
I may be having 2 more blocks set up at my next pain management appointment. A few days of eased pain isn't much and some mind think not even worth the risk, but in my situation it is worth the breather I get when pain decreases enough for me to smile and mean it.
I'm reconsidering having the nerves severed permanetly. If I do it, I may never walk again. I wouldn't feel my foot/leg.
There are no good options with this illness. Learning to manage ones own pain with the assistance of a pain management clinic is all we can do.
Visual imagery, meditation, distraction, mobilities, meds, spinal cord stimulation and physical therapy.
Move it or lose it.
Until next time
My body tells me when it's about to rain. It goes crazy days before. I've been pushing myself to have some sort of routine. At best it's dinner for the men each night. I'm not very active at all, my legs only have so much time in a day to keep me up. I plan that up time for preparing supper. I serve them their plates, wash up the dishes and I'm down again. Sometimes I eat, sometimes I don't.
This illness continues to suck the life out of me. It's not just the pain, no energy at all.
I'm often back in bed right after dinner is taken care of. Try to relax to a little tv. Wait and hope to fall asleep and stay asleep, but I'm lucky to get 2 hours at a time.
Sometimes I try to knock myself out with OTC pm meds. (Tylenol PM, etc) I just don't stay asleep. I can never get comfortable.
My body seizers often, myoclonic jerks partially due to Dystonia which I ended up with secondary to CRPS. It's like some one pushed me hard, jerked me violently. I've hit myself in the face before when my shoulders and arms jerked. It's scary.
They are completely uncontrollable. Never know when it's coming. It's all night long and only recently starting when I'm upright or trying to walk. It's usually always been in a laying position.
Every so often, I'm found sitting up in bed in indian style, but asleep. It's the only way to ease the jerking. I assume that's why I do it. They'll let me know to lay back down and I do, but sometimes I do it again not knowing I'm doing it. I find myself sitting up all the time.
I worry over it, but what can a girl do?
I don't use my wheel chair in the home. I use my legs. But it's getting harder and harder. I have to pace myself.
Really that's the only reason they get dinner... pacing. If I over do it, we all lose out.
Our daughters have been moved out for about 6 weeks now I think. I'm the sole female here. 2 men, the son and I.
I may be having 2 more blocks set up at my next pain management appointment. A few days of eased pain isn't much and some mind think not even worth the risk, but in my situation it is worth the breather I get when pain decreases enough for me to smile and mean it.
I'm reconsidering having the nerves severed permanetly. If I do it, I may never walk again. I wouldn't feel my foot/leg.
There are no good options with this illness. Learning to manage ones own pain with the assistance of a pain management clinic is all we can do.
Visual imagery, meditation, distraction, mobilities, meds, spinal cord stimulation and physical therapy.
Move it or lose it.
Until next time
Wednesday, March 24, 2010
Friday Night @ The River's Edge
It was a great time in many ways and in a few others not so good. Me, I had a blast! I danced with others on the dance floor, I flirted, teased, just had lots of fun. I was hoping I would since I had to be in the surgery center yesterday for a LSNB (pain block). We'll get back to that in a minute.
Back to the bar.. they had a live DJ, quite a few people I know were there, including a man I've known for about 20 years. He's getting married. First marriage for both him and his girl. I'm really happy about that and happy for him.
It was suppose to be a belated birthday gathering as one daughter turned 22 on the 11th and the other 21 on the 15th.
All the couples they grew up with came, we must have had 20 people there not including ourselves. It turned out to be more of a party for the oldest than the youngest and I felt really bad.
One daughter let all her friends know to be there, the other didn't. sighs
Something happened later and 2nd daughter and 1st daughters baby daddy split and walked home. sigh sigh sigh
We spent the night in West Sac that night at their apt and took a cab there. No drinking and driving!
Came home the next morning.
As for my time at the pain and diagnostics surgery center yesterday morning. I came home and slept like I haven't in months. I'm sore from the injections and have some pain from my illnesses, but I'm happy with the results, just worried it won't last long. I go back to pain management tomorrow to either change my meds or set up additional blocks. Those are my only options at this time.
In photo- Jessica, Ebony, Me, Kharisma and Leslie
Until next time...
Wednesday, March 03, 2010
Comedian John Caparulo
It was a great show at the Punch Line in Downtown Sacramento they said. Sadly I wasn't able to make it, but the man and his daughters did.
I really wish I could have attended but I'm afraid I'd have ended up a party pooper that day.
I'm soooo glad they enjoyed it.
Until next time...
Thursday, February 25, 2010
They Left the Nest
The girls moved out already. It came really fast. Originally when it was sprung on us, it would have been around the first. Not! It was Tuesday! Up and out! They still have much to move out of here. Everything really. Only took a few items. Haven't seen them since.
We had a few appointments on Tuesday. Prior to heading out, we were told they may get the apartment that day.
While we were out and about we got another call that they did in fact get it and the keys to move in as well.
After the appointments we went and bought them major necessities like toiletries, silverware, hand towels, kitchen stove mittens, food, broom, mop, cleaning supplies and so forth.
The girls turn 22 and 21 next month. While they both already got their birthday gifts early, in a way they got even more.
They are suppose to return this weekend to continue moving out their belongings.
I really didn't think it would come so fast. I am glad though that they had a plan of action and executed it.
Soon we'll be re painting and cleaning the carpets. Yay.
Our son has 2 rooms now. One for his bedroom and another for his Studio. (He writes and mixes music)
We'll soon have a new addition to the home. One who will use the 2 room addition. Double yay!!!
I'll now be the only female in the home. Eeeps!
Quite a change.
It's much more peaceful already. I don't have to worry about asking them to get their own chores done, clean up their own messes, watch the grandson, etc.
Now we can visit one another, they can come home for holidays or us go with them. It should be nice.
Until next time...
We had a few appointments on Tuesday. Prior to heading out, we were told they may get the apartment that day.
While we were out and about we got another call that they did in fact get it and the keys to move in as well.
After the appointments we went and bought them major necessities like toiletries, silverware, hand towels, kitchen stove mittens, food, broom, mop, cleaning supplies and so forth.
The girls turn 22 and 21 next month. While they both already got their birthday gifts early, in a way they got even more.
They are suppose to return this weekend to continue moving out their belongings.
I really didn't think it would come so fast. I am glad though that they had a plan of action and executed it.
Soon we'll be re painting and cleaning the carpets. Yay.
Our son has 2 rooms now. One for his bedroom and another for his Studio. (He writes and mixes music)
We'll soon have a new addition to the home. One who will use the 2 room addition. Double yay!!!
I'll now be the only female in the home. Eeeps!
Quite a change.
It's much more peaceful already. I don't have to worry about asking them to get their own chores done, clean up their own messes, watch the grandson, etc.
Now we can visit one another, they can come home for holidays or us go with them. It should be nice.
Until next time...
Sunday, February 21, 2010
When Children Move On.. and Out
A few days ago we were informed our daughter's are moving out. While this is a good thing, their dad wasn't pleased at the abruptness.
We just don't see how they will make it, however, gotta let them go and see if they can fly.
They often try to take advantage of us as is. In the last months this has been in question more than once. Adults pay rent, adults living in parents home do chores. No one gets a free ride. They can't pay rent here, but can elsewhere?
There was the main issue.
Army girl had just switched rooms with her brother. She took the second largest room and he took the smaller. Actually her bedroom might be larger than ours, but ours has the master bath.
We knew something was up, but didn't know it was a double doozie.
The oldest and grandson leaving will open up the 2 room addition to the home with private entrance. Similar to a living room with seperate bedroom. A door which leads into the home and another out front and a few feet from our own front door. It could also be considered a den with an extra bedroom.
One of my major goals was to one day use that addition for a support group meetings.
There are no support groups for RSD/CRPS in the Sacramento area. People need real time support. Online is a good alternative, but it will never replace actual flesh and blood contact. I could start a non profit. I have options.
We can also rent it out.
I could start a day care. The bedroom would fit 2 bunk beds, the front room/den area a play area.
I highly doubt I would ever do this. I don't have the energy for rug rats.
Our oldest daughter often helped me during surgeries etc. A care giver of sorts. But am thinking with all the extra house work that comes from her family, that once they are moved out and army girl as well, there won't be as much to do.
I may eventually, a little at a time, get the home the way I will like it. Get the baby prints off the walls, by painting, all the toys, but a few will be gone. The kitchen will be better kept in order. Electricity bills will decrease.
It's too much with a house full. Especially of adult children who don't care to even clean up their own messes. That's hard on us.
They're moving back to the apartments we moved from prior to buying our home. Back to West Sacramento, where we lived since it became it's own city separate from Sacramento in 1987.
We lived in those apartments since the fire in 2000 where we lost everything. No renters insurance. (any one who rents, please get insurance).
A year later, I was injured. I know all their memories lie within and around those apartments.
Now we'll just have our son to care for on a daily basis. And too it will give him a place to spend time away from home on occasion. And our grandson can come home to visit us as well.
They just have to realize that we won't be paying their way. One has a child, the other has been in the Army... they can do it, but responsibility comes with it.
It's going to go from full noisy house to nearly empty around the first of March.
A good birthday present for the both of them in a way. One turns 22 March 11th and the other 21 March 15.
And not to leave our son out.. he'll be 13 March 31st.
See how I couldn't leave him out? All March babies. ~grins
I'm beginning to get excited for them. I know we'll help them gather items of need. Kitchen and toilet necessities. Help find them furniture or pass them things from here. Just wont be putting out a lot of money. We're tight on funds ourselves and will now lose the little rent we do get from them.
One thing is for sure the empty rooms will need to be painted and carpets cleaned and they'll have to come back and take care of that. The oldest already agreed to come back and help paint the entire home since her boy marked some of the walls and such.
Just hoping it all turns out to be a good thing all around...
Until next time
We just don't see how they will make it, however, gotta let them go and see if they can fly.
They often try to take advantage of us as is. In the last months this has been in question more than once. Adults pay rent, adults living in parents home do chores. No one gets a free ride. They can't pay rent here, but can elsewhere?
There was the main issue.
Army girl had just switched rooms with her brother. She took the second largest room and he took the smaller. Actually her bedroom might be larger than ours, but ours has the master bath.
We knew something was up, but didn't know it was a double doozie.
The oldest and grandson leaving will open up the 2 room addition to the home with private entrance. Similar to a living room with seperate bedroom. A door which leads into the home and another out front and a few feet from our own front door. It could also be considered a den with an extra bedroom.
One of my major goals was to one day use that addition for a support group meetings.
There are no support groups for RSD/CRPS in the Sacramento area. People need real time support. Online is a good alternative, but it will never replace actual flesh and blood contact. I could start a non profit. I have options.
We can also rent it out.
I could start a day care. The bedroom would fit 2 bunk beds, the front room/den area a play area.
I highly doubt I would ever do this. I don't have the energy for rug rats.
Our oldest daughter often helped me during surgeries etc. A care giver of sorts. But am thinking with all the extra house work that comes from her family, that once they are moved out and army girl as well, there won't be as much to do.
I may eventually, a little at a time, get the home the way I will like it. Get the baby prints off the walls, by painting, all the toys, but a few will be gone. The kitchen will be better kept in order. Electricity bills will decrease.
It's too much with a house full. Especially of adult children who don't care to even clean up their own messes. That's hard on us.
They're moving back to the apartments we moved from prior to buying our home. Back to West Sacramento, where we lived since it became it's own city separate from Sacramento in 1987.
We lived in those apartments since the fire in 2000 where we lost everything. No renters insurance. (any one who rents, please get insurance).
A year later, I was injured. I know all their memories lie within and around those apartments.
Now we'll just have our son to care for on a daily basis. And too it will give him a place to spend time away from home on occasion. And our grandson can come home to visit us as well.
They just have to realize that we won't be paying their way. One has a child, the other has been in the Army... they can do it, but responsibility comes with it.
It's going to go from full noisy house to nearly empty around the first of March.
A good birthday present for the both of them in a way. One turns 22 March 11th and the other 21 March 15.
And not to leave our son out.. he'll be 13 March 31st.
See how I couldn't leave him out? All March babies. ~grins
I'm beginning to get excited for them. I know we'll help them gather items of need. Kitchen and toilet necessities. Help find them furniture or pass them things from here. Just wont be putting out a lot of money. We're tight on funds ourselves and will now lose the little rent we do get from them.
One thing is for sure the empty rooms will need to be painted and carpets cleaned and they'll have to come back and take care of that. The oldest already agreed to come back and help paint the entire home since her boy marked some of the walls and such.
Just hoping it all turns out to be a good thing all around...
Until next time
Friday, February 19, 2010
Life's Purpose
I just finished reading a friends blog titled "What Gives Life Purpose" and I began to reflect on my own life as I've done so many times before. I might close my eyes and travel the path of what use to be. My life and my past.
I think about the many times I've been caught up in pain of one sort or other. From molestation, losing babies, fires, death of friends and family and so much more. I also think on the good, those things I've accomplished, chosen for either by man or God, maybe both.
My twin died 3 months before I was born. I myself wasn't to survive. I remember the stories of my possible birth. A few of them. After my twin died, my mom was encouraged to have a late term abortion. An ugly type of abortion that would kill me, but also have me pass through the birth canal and be born. Just still born.
My moms life was at stake through this entire ordeal.
The second option, after my mom refused to have this done was for my parents to accept that if I survived being born, I would be mentally and physically retarded and that they need to begin arrangements to have me placed in a long term care facility.
I still have the scars of the forceps on my head. Like a horse shoe, a lucky horse shoe.
There's two reasons I was named Twinkle, one my eyes twinkled with life, I'm often told that to this day. My dark brown eyes dance and twinkle especially when in laughter, mischief and so forth. The second.. I brought a twinkle to my dads eyes.
"course most think I was named from a couple hippies. I was born at the height of the Vietnam war. 1968. Another story exists with in this also, but I won't be speaking of it now.
When I was 22 I lost my own twins. Neither survived. One was ectopic, the other in uterus. If I had known then when I learned later, I might have been able to save the second. No one knew. For such tiny things, I carry an enormous scar. Not just an emotional scar, a physical one.
My belly was cut far from the left to far to the right and is quite apparent to this day. The result of the surgery and it being an exploratory left me with the reminder all my days. From that time on I was not supposed to be able to have children. Both our girls were born by the time I was 20. To imagine 4 children at 22... wow. I left it with being God's choice.
My Master was the last to carry on his family name.
I prayed and prayed.
Nearly 9 years after are oldest daughter was born, I gave birth to a son. It's odd how life works. I had already signed for a tubaligation prior to being wheeled in for that surgery where those babies were lost. Prior to being rolled in, my doctor, who was also my moms doctor and who delivered me, ask me one last time if I was sure, together we all tore up the signed documents.
Had I done that, our son would have never been. After all, he already shouldn't have been.
I went on to lose another child 2003. January 8th. I'll never forget it.
A few other things tried to get the best of me over the years. I learned to just move on.
The 9 year anniversary of my injury was January 26th of last month. And since then it's been a hard road.
What's my purpose?
I do know that had I not been injured and ending up with these various illnesses, debilitating ones, I would have never met so many wonderful people.
1000's of people in pain.
There's no doubt some would have crossed my path or mine theirs, but not to this extent.
Now I'm a guinea pig for medication research, therapy programs and so forth. An advocate for those suffering and those trying to live with the little they've got.
I'm taking a medication intended for Opiate addiction and instead using it for pain control. The nastiest stuff imaginable that is taken under the tongue until completely dissolved usually 10 minutes each time.
Last week I was having suicidal ideations again. I hadn't felt that way for awhile. Thinking of ways out, a break, and end to it all. I didn't act on my thoughts, instead I secluded myself for days. Turned off the comp and waited for the ugly emotions to leave me.
I wasn't thinking that way because I really wanted to die, on the contrary, I want to live.
...But not like this.
Continuous pain distorts perception. There are moments of insanity when the painful peak is so high it seems it will never ease down. It's easy to lose ones mind, even for a moment. Reality pushes forth and the right mind, knowing right from wrong, shows it self once more. The ability to reason becomes present long enough to tell myself "Are you crazy?"
My purpose surely wasn't home schooling our son,
but I experienced it.
Maybe my purpose is "experiencing".
I'm nearly certain part of it is the ability to understand. Walk many shoes. Remain compassionate, loyal, devoted and all be able to retain the playful spirit I once shared with people on a regular basis, either through work or association.
I've never turned hateful through any of it.. Even parts I haven't mentioned...
Sure I've been hurt, or at times felt punished some how, but I'd also have to believe I've done something to be punished for and.. I haven't. It could be the demons of dark trying to sway me from the goodness of light and if that could be true...
I could have the devil on me for not turning the other way and into it's darkness..
My ultimate purpose could be remaining in the light of love and forgiveness and if that's all there is to it...
I can be happy with it..
If there's more to it..
Much is left to be seen
.. and learned.
Until next time..
I think about the many times I've been caught up in pain of one sort or other. From molestation, losing babies, fires, death of friends and family and so much more. I also think on the good, those things I've accomplished, chosen for either by man or God, maybe both.
My twin died 3 months before I was born. I myself wasn't to survive. I remember the stories of my possible birth. A few of them. After my twin died, my mom was encouraged to have a late term abortion. An ugly type of abortion that would kill me, but also have me pass through the birth canal and be born. Just still born.
My moms life was at stake through this entire ordeal.
The second option, after my mom refused to have this done was for my parents to accept that if I survived being born, I would be mentally and physically retarded and that they need to begin arrangements to have me placed in a long term care facility.
I still have the scars of the forceps on my head. Like a horse shoe, a lucky horse shoe.
There's two reasons I was named Twinkle, one my eyes twinkled with life, I'm often told that to this day. My dark brown eyes dance and twinkle especially when in laughter, mischief and so forth. The second.. I brought a twinkle to my dads eyes.
"course most think I was named from a couple hippies. I was born at the height of the Vietnam war. 1968. Another story exists with in this also, but I won't be speaking of it now.
When I was 22 I lost my own twins. Neither survived. One was ectopic, the other in uterus. If I had known then when I learned later, I might have been able to save the second. No one knew. For such tiny things, I carry an enormous scar. Not just an emotional scar, a physical one.
My belly was cut far from the left to far to the right and is quite apparent to this day. The result of the surgery and it being an exploratory left me with the reminder all my days. From that time on I was not supposed to be able to have children. Both our girls were born by the time I was 20. To imagine 4 children at 22... wow. I left it with being God's choice.
My Master was the last to carry on his family name.
I prayed and prayed.
Nearly 9 years after are oldest daughter was born, I gave birth to a son. It's odd how life works. I had already signed for a tubaligation prior to being wheeled in for that surgery where those babies were lost. Prior to being rolled in, my doctor, who was also my moms doctor and who delivered me, ask me one last time if I was sure, together we all tore up the signed documents.
Had I done that, our son would have never been. After all, he already shouldn't have been.
I went on to lose another child 2003. January 8th. I'll never forget it.
A few other things tried to get the best of me over the years. I learned to just move on.
The 9 year anniversary of my injury was January 26th of last month. And since then it's been a hard road.
What's my purpose?
I do know that had I not been injured and ending up with these various illnesses, debilitating ones, I would have never met so many wonderful people.
1000's of people in pain.
There's no doubt some would have crossed my path or mine theirs, but not to this extent.
Now I'm a guinea pig for medication research, therapy programs and so forth. An advocate for those suffering and those trying to live with the little they've got.
I'm taking a medication intended for Opiate addiction and instead using it for pain control. The nastiest stuff imaginable that is taken under the tongue until completely dissolved usually 10 minutes each time.
Last week I was having suicidal ideations again. I hadn't felt that way for awhile. Thinking of ways out, a break, and end to it all. I didn't act on my thoughts, instead I secluded myself for days. Turned off the comp and waited for the ugly emotions to leave me.
I wasn't thinking that way because I really wanted to die, on the contrary, I want to live.
...But not like this.
Continuous pain distorts perception. There are moments of insanity when the painful peak is so high it seems it will never ease down. It's easy to lose ones mind, even for a moment. Reality pushes forth and the right mind, knowing right from wrong, shows it self once more. The ability to reason becomes present long enough to tell myself "Are you crazy?"
My purpose surely wasn't home schooling our son,
but I experienced it.
Maybe my purpose is "experiencing".
I'm nearly certain part of it is the ability to understand. Walk many shoes. Remain compassionate, loyal, devoted and all be able to retain the playful spirit I once shared with people on a regular basis, either through work or association.
I've never turned hateful through any of it.. Even parts I haven't mentioned...
Sure I've been hurt, or at times felt punished some how, but I'd also have to believe I've done something to be punished for and.. I haven't. It could be the demons of dark trying to sway me from the goodness of light and if that could be true...
I could have the devil on me for not turning the other way and into it's darkness..
My ultimate purpose could be remaining in the light of love and forgiveness and if that's all there is to it...
I can be happy with it..
If there's more to it..
Much is left to be seen
.. and learned.
Until next time..
Tuesday, February 09, 2010
Woot! Home From Casino
... And brought it all home (The entire $250.00). Woot Woot!!!!
A little over $100.00 more.
Sometimes it's so hard to walk away... but..
I did! He praised me.. he knows how I can get wanting to play it back.
On the way home, he bought me Valentines presents. As I said before.. I don't often ask for anything, he let me pick something out in a monetary range.
I got 2 new irons. A Straighten (with curling ability) and a curling iron I've never seen before. It's like 3 irons all connected for spiral or horizontal curling.
Hm.. will be fun to play with.
Gotta do something with my long tresses other than braiding. ~grins
Until next time...
p.s.
Happy Birthday... Master .. ~smiles
A little over $100.00 more.
Sometimes it's so hard to walk away... but..
I did! He praised me.. he knows how I can get wanting to play it back.
On the way home, he bought me Valentines presents. As I said before.. I don't often ask for anything, he let me pick something out in a monetary range.
I got 2 new irons. A Straighten (with curling ability) and a curling iron I've never seen before. It's like 3 irons all connected for spiral or horizontal curling.
Hm.. will be fun to play with.
Gotta do something with my long tresses other than braiding. ~grins
Until next time...
p.s.
Happy Birthday... Master .. ~smiles
Sunday, February 07, 2010
Californina Lottory Woot Woot
A few days ago my Master brought home 14 lottery tickets. An odd number but the left over of a $6.00 purchase. He kept 2, gave our son 2 to scratch off and gave me the rest.
I won a $50 dollar scratcher and a couple of free tickets. Yay! ( a 1 dollar ticket from the game Make Me a Millionare)
The next day I asked if I can have more with the winnings. He said sure, I won it.
I was tickled. He bought 20 and again we split it.
I won a $200 dollar ticket. Woot Woot!!!! (A 2.00 dollar from the game Diamonds)
It's a game that has 10 slots and one is to match your numbers to space/slot numbers to win that prize or uncover a 4X to auto win 4X the amount.
I won, 20, 20, 10- 4X, 20, 20, 20, 20, 20, 20. ~big smile
Also one 3, $10 dollar tickets, 2, $2.00 tickets and 3 tickets.
Soooo out of the $36.00 dollar winnings and putting the 200.00 away, he got me more. lol
Won 30 back, lost the 6.00 and ...
Have been wanting to get away from here. So he booked us a room at Jackson Indian Casino which was going to be for today until tomorrow, but pain got the best of me even under happy circumstances.
We're going tomorrow. Taking the $230.00 with us.
I won our mini vacation and am sooooo happy!
If we lose it, it's okay because there's nothing out of pocket.
I feel lucky and blessed. Hopefully my winning streak isn't over.
Kept winning 10's on the lottery tickets. ~grins
So we're heading out around noontime tomorrow, maybe earlier and returning home on Tuesday the 9th. If we win anything, we may stay an extra day.
Hopefully that day will bring some good luck since... not only is it my dad (who's passed on) and my moms wedding anniversary, but also someone birthday whom I'm close to.
Mom has been re married several years, but I still make note of their day together. Dad and mom were married 25 years when he passed in 1991, when I was 22.
I'm glad to get a way before my next pain block, probably sure have waited to do so ... after, in case in relieved me enough.. I could have had less pain going, but...
The man needs a break too and is happy to take me, so tomorrow is it.
If I need to I can go back to the room and rest. When we went last year that's exactly what I did. Pain escalated and he took me back to the room, had some vroom vroom, fell asleep and when it was time to go back down (he set an alarm) I still wasn't well enough and he went instead. I wished him much luck and went back to sleep.
I poop out too fast even in fun.
Casino's aren't good places to use walkers or wheelchairs. So I'll wear lidocaine beneath my ankle brace. I have a cane that's always kept in the van, so will have it if I need it.
Being there is really a lot of sitting also and since my butt is broken lol.. I have to stand as able to relieve it as well.
I'm determined to have as much fun as I can. For both of us.
Until next time...
I won a $50 dollar scratcher and a couple of free tickets. Yay! ( a 1 dollar ticket from the game Make Me a Millionare)
The next day I asked if I can have more with the winnings. He said sure, I won it.
I was tickled. He bought 20 and again we split it.
I won a $200 dollar ticket. Woot Woot!!!! (A 2.00 dollar from the game Diamonds)
It's a game that has 10 slots and one is to match your numbers to space/slot numbers to win that prize or uncover a 4X to auto win 4X the amount.
I won, 20, 20, 10- 4X, 20, 20, 20, 20, 20, 20. ~big smile
Also one 3, $10 dollar tickets, 2, $2.00 tickets and 3 tickets.
Soooo out of the $36.00 dollar winnings and putting the 200.00 away, he got me more. lol
Won 30 back, lost the 6.00 and ...
Have been wanting to get away from here. So he booked us a room at Jackson Indian Casino which was going to be for today until tomorrow, but pain got the best of me even under happy circumstances.
We're going tomorrow. Taking the $230.00 with us.
I won our mini vacation and am sooooo happy!
If we lose it, it's okay because there's nothing out of pocket.
I feel lucky and blessed. Hopefully my winning streak isn't over.
Kept winning 10's on the lottery tickets. ~grins
So we're heading out around noontime tomorrow, maybe earlier and returning home on Tuesday the 9th. If we win anything, we may stay an extra day.
Hopefully that day will bring some good luck since... not only is it my dad (who's passed on) and my moms wedding anniversary, but also someone birthday whom I'm close to.
Mom has been re married several years, but I still make note of their day together. Dad and mom were married 25 years when he passed in 1991, when I was 22.
I'm glad to get a way before my next pain block, probably sure have waited to do so ... after, in case in relieved me enough.. I could have had less pain going, but...
The man needs a break too and is happy to take me, so tomorrow is it.
If I need to I can go back to the room and rest. When we went last year that's exactly what I did. Pain escalated and he took me back to the room, had some vroom vroom, fell asleep and when it was time to go back down (he set an alarm) I still wasn't well enough and he went instead. I wished him much luck and went back to sleep.
I poop out too fast even in fun.
Casino's aren't good places to use walkers or wheelchairs. So I'll wear lidocaine beneath my ankle brace. I have a cane that's always kept in the van, so will have it if I need it.
Being there is really a lot of sitting also and since my butt is broken lol.. I have to stand as able to relieve it as well.
I'm determined to have as much fun as I can. For both of us.
Until next time...
Thursday, January 28, 2010
Another Pain Block
I went to my PMD (Pain Management Doctor) on Tuesday. Due to the new damage to my right foot he's seeking authorization to do another Lumbar Sympathetic Nerve Block to try to keep damage where it is.
I'm not sure if I already mentioned it but I biffed it about 3 weeks ago. Lost balance from my leg giving out and fell to the side slamming that same foot into the side of the bed post near the ground. Ouch! The bruising is just now beginning to ease up.
I spent 8 hours in the ER last weekend when our daughter was hit by a car, actually drug by it. We left out of here in a hurry and all I thought about was getting to her. We didn't know yet the extent of her injuries. I didn't have my wheelchair which is usually in the van. It had been removed to move furniture and we didn't realize it wasn't there in the commotion. I used my feet. It was complicated. But she was worth it.
Thank God there was no broken bones, just severe contusions and road rash from the vehicle pulling our daughter.
Our son may be able to return to school next week. He's doing much better on the Adderall.
I have mixed thoughts about the pain block. Of course I'm praying it will ease my pain, but I'm not looking forward to the needles. They do put me to sleep for the procedure and I'm usually home within 4 hours.
I got a letter today from the insurance company who's trying to get me to do a compromise and release of my future medical. I know it would get a lot of money. At least a quarter mil. But I'm not signing it away. I need the future medical and I know their game from before. They want me to see dollar signs. I mean ... most would jump at that offer.
Especially now... the economy, shortage... and so forth. We could definitely use it. But that's just it...
And soon enough we wouldn't be able to afford my medical.
So no deal. $250.000 would only pay for 2 years of medical at most. My SCS alone to maintain would eat that right up, not counting meds or procedures.
Just can't do it. My Master said so.
If this next block works... I'll get a couple of weeks of ease. If it doesn't... ugh. Been there done that too. The second to last one that I had caused more pain and I couldn't weight bare at all for 3 days. I couldn't put any pressure on my leg.
Hopefully things will get back to a more normal living soon. Home schooling a child isn't as easy as it seems. Haven't had time for anything... not even my groups.
I did assist an attorney with a claim for his client to present in court. I felt good about that.
Until next time...
I'm not sure if I already mentioned it but I biffed it about 3 weeks ago. Lost balance from my leg giving out and fell to the side slamming that same foot into the side of the bed post near the ground. Ouch! The bruising is just now beginning to ease up.
I spent 8 hours in the ER last weekend when our daughter was hit by a car, actually drug by it. We left out of here in a hurry and all I thought about was getting to her. We didn't know yet the extent of her injuries. I didn't have my wheelchair which is usually in the van. It had been removed to move furniture and we didn't realize it wasn't there in the commotion. I used my feet. It was complicated. But she was worth it.
Thank God there was no broken bones, just severe contusions and road rash from the vehicle pulling our daughter.
Our son may be able to return to school next week. He's doing much better on the Adderall.
I have mixed thoughts about the pain block. Of course I'm praying it will ease my pain, but I'm not looking forward to the needles. They do put me to sleep for the procedure and I'm usually home within 4 hours.
I got a letter today from the insurance company who's trying to get me to do a compromise and release of my future medical. I know it would get a lot of money. At least a quarter mil. But I'm not signing it away. I need the future medical and I know their game from before. They want me to see dollar signs. I mean ... most would jump at that offer.
Especially now... the economy, shortage... and so forth. We could definitely use it. But that's just it...
And soon enough we wouldn't be able to afford my medical.
So no deal. $250.000 would only pay for 2 years of medical at most. My SCS alone to maintain would eat that right up, not counting meds or procedures.
Just can't do it. My Master said so.
If this next block works... I'll get a couple of weeks of ease. If it doesn't... ugh. Been there done that too. The second to last one that I had caused more pain and I couldn't weight bare at all for 3 days. I couldn't put any pressure on my leg.
Hopefully things will get back to a more normal living soon. Home schooling a child isn't as easy as it seems. Haven't had time for anything... not even my groups.
I did assist an attorney with a claim for his client to present in court. I felt good about that.
Until next time...
Friday, January 22, 2010
What Color Am I?
Our grandson will be 4 on the 2nd of February. He joined me in my den area (The dining room converted to a den of sorts) for some conversation. He talks a lot, exceptionally bright for his age and a sponge for information.
He said "Nana, my other grandma is black!" My Momma just told me. He has seen his other Grandma before. He calls her grandma and me nana. He never recognized color before in people though I'm sure he wondered of it in some way.
He was looking to me for affirmation that his mother was right. I told him it was true.
He said "momma told me I'm black and white". I said yes baby, you are. He seemed a little confused, but accepted it as the truth.
He began looking at his arms and legs. He didn't quite understand.
He bounced on the sofa a little as he became even more curious, but unsure.
He said "nana!!! "I can't find by black". I wanted to laugh at the way he said it. Quick, blunt and most serious.
He began comparing my skin to his and I rested my arm touching his. Not much of a color difference this way.
He bounces over to me and excitedly said he found "my black" (nana's black), he pointed to my eyes and said your black is on top your white, nana! He looked into the mirror and again excited showed me that he found "his black". Both of our eyes are dark brown.
No one else in the home has brown eyes. Not his mom, not his grandpa, not his aunt or his uncle..
I attempted to tell him that other people will call him black. Other people won't "see his white". He wanted to know why. That was hard on me. I knew the day would come.
He's never ever been alienated from black people or family. He's been brought up with both in his life.
I stressed to him that no matter what others said.. He is white! And he is black! He is both equally.
Growing up myself it was often assumed I was one color or another. The fact of the matter is that I am like a coat of many colors. A bit of nearly everything runs through my veins.
Which one am I?
I'm just me!
My grandson isn't African American as he didn't come from Africa, nor did his father, or grandparents...
They are Black Americans.
So while my grand son has yet to understand "where his black is", I can only hope to teach him that one is no better than the other and when the time comes for all the other questions, those questions I'm not much looking forward to, the questions of race, discrimination, prejudice...
I can help him walk both shoes, understand controversy from both sides, have faith in both cultures, take some things to heart and dismiss other things.
We've come far as a people, but I'm afraid not far enough...
Once he "finds his black", he will lose his white by societies standards. No one will see him as white. And I don't like that.
He will always be both regardless and he can define himself as one, or the other, or both.
Until next time...
Monday, January 18, 2010
Feeling PAIN of Others
How many times have we heard over the years or claimed to feel the pain of other's? My mom has claimed to feel my pain, my Master feels pain in the same area's as I do and when he had his heart attack when he was 38 (He's 42 now) I swore I felt his.
Usually it's passed off as coincidence or that we are experiencing it from our minds. Just the thought of it makes us hurt.
An article in my monthly Pain Monitor from the American Pain Foundation piqued my interest further.
The article from Reuter's is located here: The Brain May Feel Other People's Pain
I'm left to wonder if we really feel some one elses pain or if our brains imagine the pain, therefore, we feel it.
It's been said twins especially identical feel each other's pain and perceptions.
Is this a connection of closeness?
In the article people are stimulated by images of pain. This would mean no closeness or physical connection.
Interesting all the same.
Until next time...
Usually it's passed off as coincidence or that we are experiencing it from our minds. Just the thought of it makes us hurt.
An article in my monthly Pain Monitor from the American Pain Foundation piqued my interest further.
The article from Reuter's is located here: The Brain May Feel Other People's Pain
I'm left to wonder if we really feel some one elses pain or if our brains imagine the pain, therefore, we feel it.
It's been said twins especially identical feel each other's pain and perceptions.
Is this a connection of closeness?
In the article people are stimulated by images of pain. This would mean no closeness or physical connection.
Interesting all the same.
Until next time...
Sunday, January 17, 2010
Lingering Pain
For days now, weeks even, pain has been lingering harshly. Partly due to the fact I slammed my foot somewhere at the side of the bed causing a small cut, I stumbled and rolled on my toes. I knew it was giving me troubles and when it happened I even screamed out something to the effect I broke it again. As the initial pain from the slam eased down, I quit thinking about it. Going to the ER wouldn't have done me any good 'cept caused us a medical bill. Not like I could have gone to get a shot of morphine or something for that pain.. I can't take Opiates while on Suboxone.
One thing I learned in the FRP is not to focus on pain. In prior years I did. I think many of us do.
An example of focus would be that I would often look at my foot, and dwell on the 3 scars there, the discoloration and so on.
Days later when I took a really good look at it, wow. No wonder. When in the shower I hadn't looked down at all, soaking in a epson bath I did. There's a dark bruise from the beginning of my third toe to the side of my baby and at least the size of a half dollar moving upward toward right mid foot with a small cut from the impact.
But that's not where it hurts the most from this recent injury... it's hurts above my ankle on the right. Stabbing and deep.
I took pics in case my PMD wants to see or just to keep in my home file.
It's not easy to not focus on what hurts. Distraction is the best.
I've been using my Light Relief System for my right hip and thigh... it helps while it's on me, but not much after its not. It's the heat source that works best I think. Course the lights may have something to do with it.
It was a costly modality when my Master purchased it for me a year ago.
I'm thinking of trying aspercream again. I used all those products years and years ago. Salonpas, aspercream, icey hot.. capsaisen? etc.
But anything with that icey stuff in it makes me scream. Am serious. Not a good thing at all. It doesn't help, it worsens it.
I slept with 6 Lidocaine patches on last night and continued to wear through out the day. Usually one is to wear them 12 hours on 12 off I believe, but mine are prescribed for 20 on, 4 off.
I had them stuck from my right butt cheek to beneath my leg and my hip and thigh..
It just doesn't penetrate deep enough for relief. I can't recall the ingredients of the asper cream but if I do recall correctly... it's just an aspirin pain relieving cream without all that other crap.
You'd think the others including bengay for arthritis might help me for my arthritis, osteo etc... but I guess because my CRPS overlaps it with the nerve damage it's why it doesn't.
I'm just glad I didn't biff it again, my knees have taken on much damage from falling. Ugh.
Each time I fall I'm reminded of the original fall that caused all this. I guess that's the PTSD messing with me. Remember specifically tripping and having my hands out to break the fall, and tripping and tripping because there was nothing to grab onto. Needless to say I really did fly. lol Until I landed on the back of my head, my ass, and my back on a hard cement floor..
I never was xrayed for any of that. And I never did push it.
Looking back maybe I should have. On the other hand, sometimes it's just better to leave things be. Dunno.
It'll be 9 years on the 26th of this month.
Nothing has stopped hurting since. But in it all I've been able to walk many shoes I may have otherwise never done.
My knowledge, compassion and understanding keeps me going.
Until next time...
One thing I learned in the FRP is not to focus on pain. In prior years I did. I think many of us do.
An example of focus would be that I would often look at my foot, and dwell on the 3 scars there, the discoloration and so on.
Days later when I took a really good look at it, wow. No wonder. When in the shower I hadn't looked down at all, soaking in a epson bath I did. There's a dark bruise from the beginning of my third toe to the side of my baby and at least the size of a half dollar moving upward toward right mid foot with a small cut from the impact.
But that's not where it hurts the most from this recent injury... it's hurts above my ankle on the right. Stabbing and deep.
I took pics in case my PMD wants to see or just to keep in my home file.
It's not easy to not focus on what hurts. Distraction is the best.
I've been using my Light Relief System for my right hip and thigh... it helps while it's on me, but not much after its not. It's the heat source that works best I think. Course the lights may have something to do with it.
It was a costly modality when my Master purchased it for me a year ago.
I'm thinking of trying aspercream again. I used all those products years and years ago. Salonpas, aspercream, icey hot.. capsaisen? etc.
But anything with that icey stuff in it makes me scream. Am serious. Not a good thing at all. It doesn't help, it worsens it.
I slept with 6 Lidocaine patches on last night and continued to wear through out the day. Usually one is to wear them 12 hours on 12 off I believe, but mine are prescribed for 20 on, 4 off.
I had them stuck from my right butt cheek to beneath my leg and my hip and thigh..
It just doesn't penetrate deep enough for relief. I can't recall the ingredients of the asper cream but if I do recall correctly... it's just an aspirin pain relieving cream without all that other crap.
You'd think the others including bengay for arthritis might help me for my arthritis, osteo etc... but I guess because my CRPS overlaps it with the nerve damage it's why it doesn't.
I'm just glad I didn't biff it again, my knees have taken on much damage from falling. Ugh.
Each time I fall I'm reminded of the original fall that caused all this. I guess that's the PTSD messing with me. Remember specifically tripping and having my hands out to break the fall, and tripping and tripping because there was nothing to grab onto. Needless to say I really did fly. lol Until I landed on the back of my head, my ass, and my back on a hard cement floor..
I never was xrayed for any of that. And I never did push it.
Looking back maybe I should have. On the other hand, sometimes it's just better to leave things be. Dunno.
It'll be 9 years on the 26th of this month.
Nothing has stopped hurting since. But in it all I've been able to walk many shoes I may have otherwise never done.
My knowledge, compassion and understanding keeps me going.
Until next time...
Friday, January 15, 2010
Order of Nature, Natural Order
In regards to a discussion on the CM GP Forum arguing the terms order of nature and natural order from the books themselves it seems there's some controversy.
I know for many years it was said the Gorean Philosophy was based on Natural Order, later came Order of Nature which bumped Natural Order away as a boo boo.
The current controversy is a FW claiming "natural order" was never used in the book series. Others are unsure and one or two claim otherwise.
So here I've been flipping through Explorers (the New for 1979 edition, first printing March 1979) where I haven't come across the words as of yet, but .... going out on a limb here.. I believe I do recall the words natural order before and if not more than once in the series, too. I'll lick the lash if I'm not recalling properly.
The FW claims not so.
I think the thread is called-- So I've discovered this thing called "Gorean".
In any event, I'm not posting anything in regards to it. Well, 'less I find the discrepancy for certain.
Perhaps the problem is different publications of same book title.
The quoted text and page number on the thread listed is not in my book.
I do love puzzles..
And I really would do the work...
but...
hehe,
Until next time...
Edit to add- I couldn't stop looking.... sheesh
One reference found and verified.
I know for many years it was said the Gorean Philosophy was based on Natural Order, later came Order of Nature which bumped Natural Order away as a boo boo.
The current controversy is a FW claiming "natural order" was never used in the book series. Others are unsure and one or two claim otherwise.
So here I've been flipping through Explorers (the New for 1979 edition, first printing March 1979) where I haven't come across the words as of yet, but .... going out on a limb here.. I believe I do recall the words natural order before and if not more than once in the series, too. I'll lick the lash if I'm not recalling properly.
The FW claims not so.
I think the thread is called-- So I've discovered this thing called "Gorean".
In any event, I'm not posting anything in regards to it. Well, 'less I find the discrepancy for certain.
Perhaps the problem is different publications of same book title.
The quoted text and page number on the thread listed is not in my book.
I do love puzzles..
And I really would do the work...
but...
hehe,
Until next time...
Edit to add- I couldn't stop looking.... sheesh
One reference found and verified.
Sunday, January 03, 2010
Health Insurance
Time are hard for many of us and lack of health insurance doesn't help any. We lost our health insurance a year ago.
Since our son had been sent away from school to be home schooled through the Independent Study Program pending his doctor's release to return due to ADHD it's been even rougher.
The school didn't like the fact that we didn't want Medi-cal, instead we opted for a program called Healthy Families. Instead of a free handout, we pay something for this. Granted a very small amount and I had no idea what that amount would until I opened the letter of approval this evening. All we wanted was to pay something and not feel as if we were free loading. I suppose even if it was medi cal we shouldn't feel so low about it, we've paid our taxes, we donate to charities when we can, we give, but still.
Our sons insurance becomes effective on the 8th of the month. Will be able to get him into his pediatrician, evaluated (and medicated if necessary, though am not looking forward to that) and back into school.
This could take a couple of months, but finally we can move forward.
We're looking into health care for ourselves. I'm pretty sure my knees are torn from my legs giving out the times they have. My Pain Management doesn't cover that really. The meds help out, but xrays etc on body parts not covered in my settlement aren't. Not even anything that's secondary to the original incident. That time has come and gone.
It'll be 9 years on the 26th of this month.
The man needs to be seen as he hasn't been on meds for his heart attack since we lost our insurance either. He and our son comes first. Me, it already is what it is.
They can be helped. Keeping a positive outlook...
Until next time...
Since our son had been sent away from school to be home schooled through the Independent Study Program pending his doctor's release to return due to ADHD it's been even rougher.
The school didn't like the fact that we didn't want Medi-cal, instead we opted for a program called Healthy Families. Instead of a free handout, we pay something for this. Granted a very small amount and I had no idea what that amount would until I opened the letter of approval this evening. All we wanted was to pay something and not feel as if we were free loading. I suppose even if it was medi cal we shouldn't feel so low about it, we've paid our taxes, we donate to charities when we can, we give, but still.
Our sons insurance becomes effective on the 8th of the month. Will be able to get him into his pediatrician, evaluated (and medicated if necessary, though am not looking forward to that) and back into school.
This could take a couple of months, but finally we can move forward.
We're looking into health care for ourselves. I'm pretty sure my knees are torn from my legs giving out the times they have. My Pain Management doesn't cover that really. The meds help out, but xrays etc on body parts not covered in my settlement aren't. Not even anything that's secondary to the original incident. That time has come and gone.
It'll be 9 years on the 26th of this month.
The man needs to be seen as he hasn't been on meds for his heart attack since we lost our insurance either. He and our son comes first. Me, it already is what it is.
They can be helped. Keeping a positive outlook...
Until next time...
Friday, January 01, 2010
Feelin' The Love
The following video is a collab of our son Kurtis V/Lil O-z (of Cashboyclick) and his buddy Tryumph. Our son wrote the lyrics, you can find his solo at 1:32 in the Video. The cover is our son also.
Hope you like...
Until next time..
Hope you like...
Until next time..
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