ambersneemie's Journal

   I'm not even sure where to begin. And perhaps I should do the responsible thing and begin when I am rested and focused. I have been spinning around this laptop all day and now I'm dizzy. I always go with the flow on Sunday, because I've decided it's my day off.

   I just spent the better part of forty minutes writing. It's hard because my hands are numb. I erased it. Twice now. I should have known better. It started being a bitch list of things that were wrong around me. I only want to put the pluses and victories here. I want to only point out the negative so that I can tell how I met and overcame the challange.

    I have many challanges but not nearly as many as most. I feel lucky... I could be really sick. I'm just lame. If I didn't have my legs at all I might be able to get around better. And it would be more obvious to people why I needed to be in the chair.

    I have had a wonderful and eye opening trip with my husband. The first really  touristy vacation in 53 years and his first in forty.  Our first ever. I came home with a fire to make it my mission to make the ADA real. To make the little blue man with the circle under his butt mean something. I was unable to get into alot of places that I took for granted were open to anybody. I followed the path with the little blue man only to find myself trapped in small places. I plan to work to remedy that.

    I thought I had done all I could to help the cause for MS. I did the clinical studies until I couldn't walk anymore. I took the drugs and did the P T. I kept a smile on my face and fell on it several times! I went to the support  groups until I couldn't drive anymore. I asked if I could help and I got no answers back to my email. Then I came back from my trip and was once again full of vinegar and wanted results. I won't take no for an answer. I started writing myself notes to remember what I wanted to do, and started calling people. I got answers. I got results.

     It turns out I am waiting for them now. They aren't ready for me. I have my name in for peer support training. That comes in the spring. I have my name on a list of political activists to stay in touch with MS and disability issues so I can write my congressman and senators. Their names are in my list of contacts to make participating better organized. I took a course in medical billing advocacy and now wait to see if they will allow me to join their membership. I went into hawk to buy a machine to help me keep my legs moving so the mucles won't atrophy.

   All of this so I can become productive again. My husband struggles to keep ends together and I must help him. I refuse to be a burden.

   I have to hire people to do what I used to do for myself. I like the fact that I am contributing to the little guy and keeping the economy going, but my bucket is getting empty!! I will get back to it again. My goal is to remove physical barriers so I can still contribute from my level.

     I have a granddaughter that was an infant when I was first declining. Now she only remembers Neemie in a chair. She laughs when I stand up and tower over her. She thinks it's funny when Neemie gets big!! Even more surprising when she gets on the floor to wrestle. I just have to be sure there is help to get back up!! She insists on helping me get around even when I don't want to go! She will be old enough to share time with again and we can do things together like I always dreamed I would with my grandchildren. It just won't be on as active a level as I imagined. I have to re-imagine things.

    So, even though I feel like I did alot before the MS, I now have even MORE to do after. I have to start over and look for other ways. I was fortunate to have done alot of cool things, maybe not earth shaking or phenominal, but certainly not watching flowers grow on wallpaper. I am now searching for ways to plant those flowers so I can enjoy watching them grow!  I used to garden on my kness, now I do it on my butt!! I won't waste time trying to rise to the occasion, I will bring it to my reach!

   Here's to eating the elephant. One bite at a time!