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...