"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!