Monday, June 22, 2015

Just a "Crazy" Ride

It's been a crazy ride! I've crossed over in so many aspects of life. For years, I decently balanced each. The day came that I tried to dribble a ball that had no air left in it. No bounce. All that was left was enough to do one or another. Only here and there has their been time or ability for a dabble in the left overs.

I've had to hit the breaks a few times. A couple of swerves and sudden stops. Refuel and get back on the road.

Once you put the key away, you can't reach your destination.

Vroom Vroom

Always be as well as you can be.

Thursday, October 11, 2012

It's Been Forever...

It's been a really really long time since I've written. So much has gone on, I'm not even sure where to begin or even if I'll be able to recall it all. 

I'll start with the latest video I produced for the Power of Pain Foundation

RSD/CRPS Limbs Montage-

I'm now the California Ambassador for the Power of Pain Foundation also. I represented them at the 6th Annual Neuropathy Action Day held in Sacramento some months back. On September 15th (last month) I worked the Convoy of Hope event in Sacramento California raising awareness for Reflex Sympathetic Dystrophy Syndrome, Complex Regional Pain Syndrome/Causalgia, Neuro Inflammatory Disease (another name for RSD/CRPS) and other Neuropathic conditions such as post cancer pain, diabetic neuropathy, Fibromyalgia etc. Answering guests questions, distributing information and ending the day with a balloon release in the name of the Power of Pain Foundation (POPF), RSD/CRPS, Causalagia, NID, Cure and HOPE! Jackie Jurek Miss Folsom Cali USA worked the event with me as did my son Kurtis who is the POPF Jr. Ambassador, my husband and daughters as volunteers.

It was a great day!

The Convoy of Hope travels all around the United States bringing and giving away much needed, clothing, shoes, medical, dental, vision screenings, job fairs, hair cuts, family portraits, 1000's of pounds of groceries, food during the event and much more to area and surrounding area residents for free. They also offer prayer tents and provide hope.

I was apart of this. The Power of Pain Foundation (Which happened to me myself that day) was surrounded by nearly 6,000 people. Nearly half than last year as the economy didn't allow people to afford the gas or public transportation to get there. Sad really in so many ways.

I'm happy though that I was given the opportunity to teach several people about a painful, debilitating and progressive disease RSD/CRPS/Causalgia that's listed a 42 out of 50 on the McGill Pain Index. The most painful condition known to man (or woman).

The McGill Pain Index

For more information- The McGill Pain Index

For those who aren't aware Causalgia is the first name give to Reflex Sympathetic Dystrophy by Weir Mitchel during the Civil War. Causalgia means burning which is the hallmark pain characteristic of the illness. If a person doesn't have the severe burning yet have all other symptoms they still wouldn't have the disease. 

The photo above is Jackie Jurek Miss Folsom Cali USA (A contestant in the upcoming Miss USA pageant and I at the Convoy of Hope Sept 15, 2012.

I've also been  nominated for "The Best Kept Secret" award in the 2012 WEGO Health Activist Awards by a really important person in the pain communities. She's also a best selling author, on TV, in media, news etc and executive director of a pain foundation! She initiated my nomination process. I was speechless when I first learned of this. It's still humbling. Please keep nominating if you would:

Best Kept Secret – Awarded to someone in the online health community who is doing great work but hasn't gotten a lot of attention.

I've never expected anything from my service but being recognized feels so wonderful really.

I've also been nominated for best Facebook site award for RSDAdvisory Info & Support.

We renewed our 25th wedding vows in a church ceremony on the 11th of August. A beautiful church wedding. Since we never had it the first time... we did it now. Wrote our own vows, got lots of wonderful photos.. for certain memories that will last a lifetime and beyond.  (My neck was adorned)

Moving up in my work has been a blessing. I wouldn't change any of this considering the cards I've been dealt.

Had my Gall Bladder taken out a few months back.  (As much as could be removed without doing the old type large incision surgery. Instead I only have 4 small incisions)

I do have several blocks coming up as well as a sleep study using the CPAP of my face on the 21st. 

I'll leave the rest of the pain out of this post.

Well wishes everyone... 


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Tuesday, October 25, 2011

It's been a long time...

It's been a really long time since I've written. I really don't know where to start.

My man had another heart attack in April the day after I returned home from a 3 day trip to Georgia to see my ill mom. My daughters accompanied me on the flight as I would not have made it on my own otherwise.

This was his second heart attack. He was 38 when he had the first one. He already had 2 stents in his heart when he had this second one. They had to replace one stent entirely and repair the other.

He returned to work 9 days later. Just like the first time he returned within 2 weeks. He's 43 now.

Last month I spent 9 days in the hospital with our 14 year old son. 6 days in PICU. He was intibated for nearly 3 days as a result of a skull fracture and 3 areas of bleeds including his frontal lobe. He's doing well considering but will be a long road to recovery.

He had just started high school less than 2 weeks before. Now he's on Home Hospital. We're home schooling him until at least Jan 1st, 2012. He's in the Police Explorers program. Am really proud of him. He was honored by the state Senator on the steps of the Sacramento State Capital over the summer. He was one of 2 children in his district to receive such recognition. He's going to the Tsunami Convention 2 days after Christmas and has become active in the Baptist Church.

My plate has been so full that I haven't co hosted the Living with Hope radio show in some time.
Hoping to do so again soon.

I am still working at MDJ and now I have my own support group on Facebook. A few years ago I had a popular one at MySpace, but eventually moved some members to MDJ while others went elsewhere. MySpace was doing so many changes and finally Groups went bye bye.

My Group on Facebook is relatively new still. Perhaps 3-4 months old. It was created and then stalled the first 2 months due to other priorities.

Still doing all I can to promote awareness for CRPS/RSD, offer resources, info and support.
I try to make it online every other day. The days of everyday, all day are in the past. Just can't manage it all as I once did. I use to do all niter's when I couldn't sleep, now I just toss and turn waiting and waiting for sleep to come. I often flip the clock without sleeping and then finally crash repeating the same thing with each new day.

I haven't been in a chat room for years. Way back when .. I use to frequent them. Just don't have the energy or time for it anymore.

If I could find a fun one.... maybe.

We had our grandson over the weekend. It was a planned occasion. Took him to the Pumpkin patch. When we got home his uncle (our son) helped him carve his pumpkin. 'Tai spent the night with us and I rode with the man Sunday evening to take him home. Got some pictures at the Pumpkin Patch too. It's hard to believe our grand baby boy is heading on 6.

It was great! Like a fair of sorts. Rides, bounce houses, ponies, lots of hay, mazes, face painting, games, ball tosses, wow, if only we knew.

We had taken the girls there when they were little, our son also. But back then it was nothing like this.

Now we know for next year! I walked it the best I could. Had the wheelchair, but the ground was too rough, so I used it as a walker then carried the pumpkins in it. lol

Tomorrow's my bday, not doing anything, just staying home. I would love a single pain free day. That's it!

Not much else to talk about right now, but I hope all is well with everyone.

Until next time...

Friday, December 24, 2010

Past Years in Review

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 as a Group Leader in the RSD support forum. (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

My Facebook is
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)

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,

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.

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...