Reflections

Haven't written in a few days and have had a lot on my mind. For one, I just can't seem to shake the pain that invades my body everyday. The last 2 days have been rough. It seems like it's just one flare-up right into the next. My knees feel twisted, my calf is constantly on fire, meds hardly help, so I end up putting myself to sleep with Tylenol PM just so that I won't feel as much pain in my sleep. And hardly any until I awake for some reason.

I started treating my face with a series of lotions and my face is smooth and soft again. Even lines that started to appear are gone. Almost like a glow a woman gets when she's pregnant. I'm not pregnant though. Nope, nope, nope. That's a done deal.

Today I meet with the team of doctors at Compass to determine a plan of rehabilitation for me. Rehabilitation isn't really the right word, I can't think of the word the assistant said to me on the phone, but it's setting up a plan of action to help me achieve some goals either way. Obviously I have been cleared as a candidate for this program.

One I know they're going to help me try to wear shoes again. I haven't wore any aside from hard rains for 8 years and I don't often go out in the rain, only if I have an appointment to go to. We're going to start turning my stim (SCS) off at night, I can't quite recall what else, but today I will learn what we're going to do for sure. While I'll more than likely be sharing with others what I learn as I go in this program, later, I'll be compiling a paper of teaching.

I've been keeping busy Leading the pain group and doing well.

I've been thinking about God and the bigger picture. Receiving at least a dozen of private emails a day asking me to pray for them in their darkest hours of pain. I always do. I've been called an inspiration so many times in open forum and privately. How can this not make me feel good? It does. It always does.

There's a Neurotropin study in Clinical Trial and still recruiting patients for CRPS type 2. Unfortunately the study is too far away for me to particape in.

Something came up in the group that really got me thinking.. One person said they believed all things happen for a reason, something I've thought also, then another person said if they believed that things happen for a reason they'd have to also believe they did something so bad as to have this illness placed upon them. The girl ended the sentence with.. I've never done anything so bad to deserve this.

That really got me thinking... I even found it to be true in many ways. It made me think of myself and my past, growing up, adulthood etc.

I too have never done anything to deserve this. I've always been a helping hand, a listener, a warm compassionate, passionate, always giving, not caring to receive, a life of service of one kind or other.

It reminded me in a way of when bad things happen to good people.

Until next time...

First Appointment at Compass

Yesterday I went to meet the Psychologist and Physical Therapist at Compass. For the course of this program I'll be dropping the use of 3rd person speech from my blog. This has to do with my treatment.

I met with the Psychologist first. I gave a history, did memory tests and so forth. I filled out those psych tests and PTSD test thingy. I've was diagnosed with PTSD a few years back.

After I met with my Physical Therapist. Not like any other PT person I've ever met before. He took an additional history, more so, trying to get to know me. He asked how long I can stand, walk etc. When he looked over at me and ask how long I could sit without leaning onto the arm of the chair like I was doing.. I didn't have an answer for him. I don't always realize I'm doing that. He told me he would never be able to take my pain away, of course this is always a hard thing to hear, but I do already know this. He said he is skeptic when people say.."I'm willing to try anything" as I did also. This is when he went on to tell me my pain would always exist. I accepted his word. I understand. But there's a chance to manage it. And I'm ready to learn.

He had me try to stand one one foot at a time while he counted to 10. I did decently I think though I looked like I was flying trying to keep balance.

He dropped a pen on the floor and told me to pick it up. I did, but did it horribly, he dropped the same pen and asked me to kneel on one leg, I did so, he told me to never do it again. he could tell I hurt myself in doing so, I didn't whine a single whimper, I blew that one.

We moved to the bed, I slid up on it, he tested range of motion in my feet, I did pretty well. We tested my toes, I can bend my left, my right embarrassed me. The first 2 toes, try to bend, the 3rd and forth don't and all and my baby toe splays out like it's waving.

He poked me with a bent out paper clip, shit! But I didn't whine, my face flushed though, he could tell. He tested sensitivity, I knew I had Allodynia, was diagnosed with it before, he confirmed it. As well as another, Dystonia, also re confirmed.. He checked my body temperature in those limbs, temperatures were off by degrees. They always are.

The atrophy in my right calf is 2.5 cm, not too bad. In previous years it stayed at 2. this last year decreased to another .5.

I didn't expect this coming...

He told me to look him in the eyes (ugh) so I did. He asked me what my leg was, I hesitated and answered my leg? He asked me what my foot was, um, my foot?

Apparently I had been calling both of them "it" the entire time. It burns, it swells, it changes color see? it it it

That was a no no. I was disassociating those parts of my body from myself. I didn't realize.

With the command of having me look into his eyes and hold it.... I had a deja vu or flash back... of being back among Goreans. sheesh!

I have to start using the rough washcloth again as home therapy to desensitize, turn my stim off at night. I'll try turning my stim off at night this week, I started to last night, but found a setting while starting too that felt good, so.... on it stayed.

I'm not sure when this is suppose to start, I have to meet with them again and I don't have that appointment date yet. This time I'll be meeting with the team. What is nice is they include you in everything. It's not like one doc says one thing, and another says another, and one is going back and forth not understanding. I meet with all of them together. I've never been apart of a team of doctors before.

Today I am so sore, I suppose from pressing towards my toes when I picked up the pens or bending my foot at the same time.

As a Group Leader I speak in first person, during my new learning I have to also for my own well being. To say "she" is disassociating me from me. Interesting in a brand new light.

Until next time..

Compass Evaluation

Yesterday was a great day with the new position. Around 4:00 p.m the phone rang and it was Pain Management, I could hear the answering machine message from the bedroom I'm staying in, but the phone was so far away, when I heard it being the voice of the assistant at the doctors office, I got up to go replay the message. Then I called them. I have an appointment on Tuesday at 2:00 p.m with the physical therapist and then at 3:00 p.m with the Psychologist. I got my authorization for Compass. By later last night I was in so much pain, I was hardly able to deal with it. It took forever to fall asleep, kept turning to try and get comfortable. Fell off to sleep around 5:00 p.m the first time, then dozed off, several times through out the night, had been awake since around 1 a.m that morning.

Our weather went from the upper 90 degrees to the high 60's. Maybe that contributed to it. The burn in my legs just wouldn't ease up. Still even now it hasn't. I just took 1,200mgs of Neurontin. The.. I'm going to forget I was ever at Marine World drug. We're leaving later this morning to go.

I became Leader and Compass Authorization came the same day, I wonder if this is a sign.
I can now let others know step by step what the process is.

I could mess with the psychologists mind if he asks me if I hear voices..and say.. "omg, did you hear that?. lol

Okay, I like to play with them. ~hangs my head.

I know they're both men, I have their names.

I just keep thinking of the long days required to complete this program. I have to try.

I've been thinking about my 3 goals. I only know for sure that one of them will be weight management, range of motion, etc. I just want to be on my feet again as long as possible. Take walks with my family. Right now, 10 minutes tops and I'm already screaming in my head at 5. This may be an unrealistic goal. They told me 7 years ago, I would be in a wheelchair in 2, I passed that up by many years, just fighting my way through each day.

I'm going to soak in an Epson salts bath pretty soon. Maybe it will take some strain off my legs. I won't even be using them today. It's just that the burn pain exists without weight bearing. It's terrible. I really feels like one has been splashed with hot water, or gotten an extreme sun burn where the heat doesn't come out. That's the nerve damage.

I need to think of long term goals. Not goals for hobbies and such. Goals that will improve the quality of my life. My physical life.

Until next time..

Compass Functional Restorational Center

I went to the doctor yesterday for my post op appointment. I was also re programmed by Medtronic, my new lead is working down farther in my foot as it was meant to do, but still not as far down as my toes which was the target. I seen Medtronic first and then my Pain Manager. I'm healing well and few more weeks and I should be completely healed from the surgery. It can take up to 6 months for my lead to take to the spine, it has to grab onto it and stick into place. This is why it's so important not to do anything too physical, or move abruptly.

My pain Manager is putting in a referral for me to begin the Compass Functional Restorational program. http://www.sacpainclinic.com/compass.php

My doctor heads and leads this program and it's located next door to my pain clinic http://www.sacpainclinic.com/ (The man in the photo is my pain manager himself)

The program is 7 hours a day, 5 days a week for 6 weeks. It scared me. Seriously.
So scared I came home, rested, and then ate 5 peanut butter cookies. Diet goes bye bye.

My vocational rehabilitation eventually became home schooling. I was going to the actual school quite a bit away from home. I couldn't handle 4 days a week for 4 hours. Then I went down to 2 days a week for 6 hours or as long as I could tolerate. A few times I was able to put in an 8 hour day, when pain was lower and I became consumed in my studies. I only graduated from the pre requisite course. I have a Microsoft Office Certificate, but never graduated from the full curriculum which was Corporate Publishing.

In order go through the Compass program I have to pass a phycological evaluation, just like when I was first considered as a candidate for my Spinal Cord Stimulator. You have to be referred, considered and pass.

Of course I want to do this program, I told my Pain Manager I did. It's not being forced upon me. But God I'm scared to fail. I would be happy to not be on the internet all day, I am more than eager to learn new techniques to control pain, I'm looking forward to understanding flare-ups more than I do now and how to get through them.

I can't wait to pass what I learn onto my website and my pain groups, or anyone in chronic pain. This isn't only for people with RSD/CRPS. It's for people who live with Chronic Pain in general.

I don't want to let my Doctor down and they know I have volunteered to do clinical trials and more. To learn from me. I want my body to be studied and used while I'm alive rather than when I'm dead.

I want to go back to work I really do, but it will be a miracle in itself if I manage to get through so many hours, a full week, for 6 weeks. We have to set 3 goals for ourselves. I've been thinking about that since last night. Most people's goal is to return to work or volunteer. If I was able to volunteer outside the home, I would choose work. If I could handle being out and about, I would rather bring in some income for my family.

Unless it was to volunteer at the program, similar program or help others with RSD. Then that would be my pay, I would feel richer than any doing that.

Maybe my calling lies in this somewhere...

I know in my heart this illness was placed upon me for a reason...

A reason I just don't understand completely yet...

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"One can never consent to creep when one feels an impulse to soar". Hellen Keller
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And no more peanut butter cookies
sheesh

Until next time...