"Don't wait for answers, Just take your chances, Don't ask me why" ~ Billy Joel

The last two weeks have been uneventful, yet not all at the same time. I'm not sure how that's possible, but let me explain so it makes sense.

My husband took me to a Rock Concert, it was awesome, however, my foot flared up from a very short walk and a couple of stairs.

I'm trying to adjust to life a disabled person, physical therapy is at a stand still, I've had to go back onto my crutches, noted an increased inability to maneuver on my left limb.

I cried when I went to price out the rental on a wheel chair to go on vacation with my family. I realized that I am disabled, differently abled, special..etc. but do not like it, because I feel I am admitting to myself that I will never again run. I have for the past few months held tightly to the hope that if I have my lumbar blocks that I would return to the pain free mobile woman that I use to be. Now I have to figure that I am not, and won't.

I'm trying to adjust to this, figure out what makes me flare up and what doesn't, but it's never the same. The inability to walk heel to toe, and well..it's kind of crazy what can happen to a person with RSD in 14 days.

With my husband to help me with groceries, I realized that if it wasn't for PT appointments I would not have to leave my house, and that's scary thought. How easy it is for a person to become a shut in, and look forward to the visits from the Jehovah's Witnesses and who all else comes door to door.

I have been having conversions with God, asking for signs and receiving them. I've been reading, lots of reading, and wondering..exploring possibilities and ideas for the rest of my life.

I've considered taking up sewing, as that I find it hard to find clothes I like and don't want to wear pj pants all the time.

Sometimes I feel I am without a purpose, though I have three sons, without a job to get up for every morning, and some place to be, I wonder sometimes why I get up in the morning.

So, I take it day by day and sometimes hour by hour, but sometimes that can be a hard thing to do. I try to do something normal, like go to a concert, and I spend the next day in bed. I try to go on a field trip with one of my boys and spend the next day unable to put weight on my foot or get out of bed. Violently sick, trying to figure out how I'm going to get to the bathroom to vomit without putting weight on my foot to get there. So it's hard to tell what's going to happen. Like I've said before, when I try to be normal, try to do normal things, I always pay for it with horrible pain afterwards, and it's not fair. It's the burden I've been given but I don't have to like it, I just have to figure out a way to deal with it.

So, as I'm dealing with it, I'm know that I'm too stubborn to ask for help some days, and sometimes I wonder why more people don't ask to help, though I'm not sure if I would take them up on the offer...

There it is two weeks in the life of a person with RSD....trying to deal.

Red Tape & The Unwelcomed

Red Tape....the request for services going to Kentucky to go to Boston to approve...Why is there always a middle man? Shouldn't we streamline, our tax dollars at works...

So why I wait for my Doctor to submit a claim for my Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome with the appropriate ICND 9 Code, on the proper form and fax it to the proper office, so I can get my MRI done on my leg to figure out how much of it actually affected by the RSD, the pain is no longer localized to the knee to toe that I was first diagnosed with...OH no!

Let us stall, and wait "no more lumbar blocks for you", for the First one, my Pain Management (PM) Specialist was on the phone screaming and threatening to report them to someone somewhere for something bad...I'm not sure, but she got the first one to be approved. When it didn't take, when it didn't do what she wanted it to, she came up with a new plan of attack. We were going at it more aggressively to confuse my system, to allow my central nervous system (CNS) to remind my brain what it was like to be pain free, we were going to double tap it (two days of lumbar blocks back to back) and wait a week and double tap it again... so while we wait for the first one to happen, while we wait for the next round to occur the pain is spreading up my thigh into my lower back, and the pain knows no end. I haven't seen my PM in month, I'm living on Neurontin, Amitriptyline, and Tramadol. And while I don't want to get into my "drug habit" so to speak, you must understand, because it speaks volumes of how the body adapts to the medications and they no longer become effective.

The Neurontin makes me what I've come to affectionately call a "Loop Head", my Amitriptyline reads "Take 1 or 2 Tablets at bedtime as needed for Insomnia/Pain" at first one would be enough to knock me out, and I was finally able to sleep. Unfortunately, 1 would not be enough into the second week of pain and not being to sleep without it, and believe me I tried, so I went up to the authorized 2 but it stopped working too, and so I'd take some Tramadol and try to go back to sleep. Now, it's sad to say but neither the Tramadol or the Amitriptyline help with the insomnia or the pain.

I'm not a drug seeker, let's get that straight away, I have three boys, and do not want to spend my days high on narcotics so I miss their daily lives. I only take my medications at bedtime, to sleep, because I need it to function as a parent. So know I'm juggling pain, a pain greater then child birth, with no assistance, and no cure in sight, trying to be the best mom that I can be, and my one glimmer of hope that I have, that I'm trying to hold on to is being bogged down by red tape, and I'm getting the "Unwelcomed" spreading of this monster up into my back!

Am I Admitting Defeat?

Disabled...
I'm not sure if I'm angry at the word or what images it invokes for me. I have spent 2 months fighting this word. And then yesterday, the thread that I was hanging by the keep me from admitting my defeat, admitting that I am disabled, broke and I cried. Tears rolling down my face as I told my wonderful husband that I can no longer do it all, I am no longer Super Woman, and my kryptonite is RSD.
I always thought that if I got everything right I would be able to return to normal, to the person I was before this diagnosis. I was injured in August 2008, and I clung to the hope that I would get fixed and get better. I now know that I will not, and it's painful to say that, because RSD will not allow me to get better. I'm always going to have balance my activities so as to not cause a flare up, nurse myself, be gentle with myself. It frustrates me, and insults me at the same time.
As I journey through this new half of my life, I need to tell you the small changes that come. First it's noticing that you can't wear just any shoe, because you're foot swells as you walk on it, and if there isn't any room in the shoe then it rubs causing blisters and ulcers on the foot. The next thing I noted is that I couldn't just wear anything, jeans felt so heavy on me. It's not an every day thing, on good days I can still wear jeans, but on bad days it's just too painful. So I adjusted, buying sweat pants, lounge pants and other light cotton pants that wouldn't rub and cause pain. Then it's not being to walk for a long time, frequent breaks are required, my cane is needed, and finally I admitted I need a wheelchair to really be able to get out and do things.
Most of the time I'm house bound, I can't drive more then 15 minutes without pain. Luckily I drive an automatic, because I wouldn't be able to work a clutch. My left foot is constantly in pain, it can vary from a numbing burning pain to a sharp stabbing pain. The RSD has spread from my toes and knees up to my hip. I can barely lay on my left side on a good day, and forget about a bad day. On a good day I can be seen walking to and from my son's school with out my cane as I pick him up from Kindergarten. I can not walk the less then ½ a mile from our house to school though, because that would cause a serious flare up and turn a good day into a bad day.
Here I am again waffling into acceptance.... I'm disabled, but I don't want to be disabled. Who wants to be right. My wonderful group of sisters I have found through facebook tell me I am “re-abled” or “differently abled”, but I still found myself labeling myself as disabled, because I can't do what I use to do, and I can't be who I use to be. I am feeling like saying I am disabled is admitting defeat.
Some days I feel defeated.....

Hoping & Coping with RSD

Coping & Hoping...hmm.. that's where we are at today.

I feel like I'm in mourning, kind of like the way I felt when I lost my Gramp so many years ago. So I look at The Five Stages of Grief. Denial, Anger, Bargaining, Depression and Acceptance.
As my Therapist told me, I was mourning my former life, the loss of my normalcy, the loss of my job, the loss of being in control. I know she's right, I know this what I feel, the loss of being able to move. It's as simple as that. The freedom to move my body and not have pain. I can not walk heel to toe on my left foot, I have extreme sharp and stabbing pain every time I move. When I'm sitting I have an achy pain that goes from my hip to my toes. The burning pain like having your foot too close to the fire or even on fire that licks up my foot into my shin and calf slowly up to my knee.

The McGill Pain Scale goes from 1-50, RSD sits at about 42, amputation of a digit is 40, child birth is a 32. There are some days when I feel like I can manage the pain, those are the days I tell everyone I'm doing okay, and I hear things like “You look good” or “Glad to see your better”, but that's when I start to get depressed, because I know I'm not going to “get better” there is no cure, I'm going to get where I can manage this monster, where I can figure out what works for me, and only me, because that's how this disease works.

Coping also includes how the bills get paid, and this causes the stress level to go up add that to the burning stabbing pain I'm feeling and there are days I don't want to crawl out of bed, everyday I do though, even if it's just to move to the couch where I sit most of the day and feel pain.

Feeling useless, broken and hurting. I don't know if that makes sense, but that's how the days are.

I didn't go through denial, I was glad to know that what I had, what I was feeling had a name. I am angry, I don't bargain, but I feel some serious depression, and I waffle into acceptance at times.

Now all I have is hope, hoping that I can manage this pain, this monster of a disease...Hoping & Coping makes up my day.

"The Day The Music Died...." ~ Don McLean

I wasn't driving my Chevy to the levy, but it was like a life altering moment.
The day my Doctor told me I had RSD, I didn't even know what it was. I had never heard of it, and yet that acronym would have such an impact on my life..one I'm still trying to figure out.

Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) the two are interchangeable, they are the same disease. RSD became CRPS, it's such a squirrelly disease, had to pin down. The effects I have can be totally different from another person suffering the disease, but we all, as I have some to realize have one thing in common, the constant chronic pain.

RSD can be caused from something as simple as a bump, a fall, it doesn't take much, but once you have it, it alters your existence. I started this journey with a dislocated knee, and a surgery to clean up scar tissue that had formed around my knee. My hopes were to get my knee back to 100%, return to work full time, and be able to run, hike, bike, play with my kids, get dressed with out the pain. The day I found out I had RSD that dream slowly began to fall apart.

First came the realization that my knee was as good as it was going to get. I would have to figure out how to do the things I wanted to do with it as it, that is if I could get past the pain I felt to do those things.

Secondly, my dream of returning to work crashed down when I was placed on long term disability and had to "mourn" the loss of my job

I wasn't just mourning the loss of my job, I was mourning the loss of my lovely normal life. I shouldn't miss it though, it had already been eight months since I had been "normal", but I was mourning the dream of returning to normalcy.

I was given medication, and no hope for a cure. A hope of remission if..and a hope for some sort of maybe a kind of normal, but nobody could tell me what that normal would be.

That's possibly the hardest thing about RSD, it's day by day, hour by hour, moment to moment. I may feel good enough to walk without my cane, but then I may need a wheel chair. I might try to walk the mall for a few hours, and the next day not be able to leave my bed. Sleep like the dead for a day and a half and not sleep at all for two... I never know, I can't make plans except to go to the Doctors and physical therapy. The constants in my life.

I rail at myself for being broken, and I feel broken physically, mentally, and emotionally, as I try to live with chronic pain...
Day number~ 61 days since diagnosed