Tuesday, May 05, 2009


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...


Louve said...

I'm sorry to hear you've been having an especially rough time of things. Maybe the weaning off the pain pills are making it extra hard, too. I'm keeping you in my thoughts and prayers.

I too do believe that things happen for a reason. I don't necessarily think those reasons are for punishment of a deed you did, or the way you've been living your life. I like to think those reasons would be because it serves a purpose, somehow. Albeit, there is no good purpose for pain. But you, as the individual you are, may be able to teach or help someone cope with something they can't as well as you...and their purpose might be for another reason, or person. If you're going to look at it for reasons, then the reasons (I'm assuming) are faith-based. Sometimes we don't know, or can't see the reasons til they've played out, or as they play out. Sometimes, you, yourself may never know the impact you left on another, but it might have been an impact that sustained them when they couldn't sustain.

I'm babbling and maybe not making any sense. But I'm continuing to think of you, twinkle...and wishing you the best. :)

His kajirah said...

Hi Louve

I went to my appointment and met with the entire team of doctors. My Pain Manager, the Physical Therapist, The PT assistant, the psychologist and lady.

While I have been approved as a candidate for the program by the team of docs, I still have to get an approval authorization from WC to begin to 6 week program. They want me to stand down down as Group Leader for the time being. I think I understand why. I've put so much time and energy into learning about RSD, I'm losing myself somewhere in doing so. I'm not getting support I'm giving it. They're exact words were "We're going to work on finding Twinkle again, moving Twinkle forward".

While I was somewhat saddened, I think it became a coping strategy for myself. I do not have to stand down yet, but I have to not devote so much time there. They want me to start back into school and finish getting my degree in Corporate Publishing. Really these are all good things for me. With that degree I have the potential to make good money for my family.

They are also going to help me drive again and if necessary put in for hand gears to operate the vehicle. Help me with weight management and so much more.

My Master while he has cared for me all this time, I need to care for him again... better.

It was sad to look at my paperwork that I came home with that said "incurable". I know that, I suppose I pretend not to. Maybe another coping strategy.

They're going to help me get on a proper sleep pattern. They are also going to reduce my meds. keep me on the Morphine, but reduce the others.

I'm scared.

They told me that my flares will worsen in the program, but that they will teach me to get through them.

I hope to God so because I'll have less meds to fall back on.

Well in either case, I'm ready.

I have to be.

Warmest wishes,

Louve said...

I'm glad they took some of that burden from you. I know it was a diversion for you, but (it sounds like) they have better coping mechanisms for you. And driving, finishing school, shifting your schedule back to a daytime schedule...those are all things that will help you feel more normal, despite the differences and challenges you face. I doubt anyone is going to definitively understand what you're going through, but perhaps, maybe, another victim of RSD.

It sounds (despite your prognosis, which I think you already knew), it was a positive day, all in all. I will be interested in hearing how it progresses...and how you do.

Thinking of you.