Walk with CRPS

Before CRPS hearing that winter is coming would have made me happy.  I loved snow, I loved sweaters and hoodies, I loved warm boots.  Now I still love all that but CRPS puts a damper on it.  My pain levels are so much higher on a daily basis in the winter. I can't go out and play in the snow.  Wearing shoes hurts so bad and in the winter you NEED something on your feet.  I settle for fur lined slippers and fur lined boots a size too big.  At home though,  I am still barefoot since having anything on my foot makes it discolored and hurt more. This past weekend I had a craft show I participated in.  My family carried everything to and from the van for set up and take down and during the show I got to sit the whole time.  Pain was up and I fought crying all day.  We get home and I napped but the pain woke me up. I did some range of motion exercises to try and work out the pain and keep up range of motion so I don't lose use of my leg....

I have discovered over the last almost 2 years with this disease that my leg can predict storms.  Earlier today my pain shot up and I told Craig (my husband for those of you who don't know me) that I think the storms were coming.  He looks out the window and says "Joni, it's sunny out" I said well somedays I can feel them coming for days.  10 tonight thunder starts and my leg gets even worse.  I knew a storm was coming. I figured I would take advantage of even more limited mobility and blog a little.  This is going to be hard to type up.  I just told Craig today how I was feeling.  Last year I grew in my faith so much, it was amazing. This year I have struggled.  Struggled big time.  I feel a little abandoned.  I know he loves me and is always there but I feel like he is just sitting back and watching right now instead of helping or showing me the way.  Today I picked up my bible for the first time in a month.  Last year I re...

Plans.  I just need to stop making plans. Every time I plan things CRPS just laughs and laughs then says no.  I had plans to be productive with designing and illustrating today. last night I didn't sleep at all. Between pain and meds I take its just not happening. By 9 this morning I was exhausted so I laid down to nap and woke up almost 6 hours later.  I woke up to my leg throbbing and hurting so bad I just laid there hoping it would go away soon.  That didn't happen.  Well, there went my day.  Hopefully this evening I can do some illustrating and relax a little.  I swear sometimes that there is someone pulling the strings related to this disease like a puppet master.  "oh, you want to take a shower? well we are going to make that a miserable experience."  "Sleep?  nope not happening either" Heaven forbid you want to be independent and go to the grocery store, you wont be able to function or walk for days.  Sometimes I think "wha...

I think I will do a series of posts about lessons I have learned thanks to this ugly disease.  Over the almost 2 years of dealing with CRPS and the additional 1 year of dealing with the injury that lead to CRPS I have learned all kinds of things.  Some I did't care to learn, some were good lessons.  The first thing I learned was, there is more than one way things can get done and it doesn't always have to be me doing it or be done my way.  The southern saying for this is "there's more than one way to skin a cat."  That saying doesn't paint a pretty picture but it is true.  I used to do all the housework and laundry and all those domestic things.  When I injured myself and ended up needing surgery it took quite a while to not have anxiety over the house not being the way I want it to be or the laundry not folded how I would etc.  Now I am forever grateful that my husband is the type of man to step up and help even after working all day.  He ne...

4:30 AM finds me writhing in pain as the spasms hit again. (check yesterdays blog for what happened over the weekend)  I am not a morning person so this really really stinks.  When I finally get them to stop I notice that once again my leg is ice cold. I actually remembered to grab the thermometer and check the difference this time. 21 degree which stinks considering my body was under 2 blankets and a sheet, that is pretty dang cold. I ended up having to call the doctor office 2 times yesterday but I finally got to talk to someone and I go in today. Hopefully we can figure out why my leg isn't working right. I mean I know I have this horrible disease but I didn't know it could make your brain and your leg not work together correctly.  I do not like this feeling.  I worry that it is my new normal with CRPS and I worry that it is something new, some new illness or disability.  I don't know which one would be worse.  I really really hope that this is just a ...

It is 3:58 am and I have yet to sleep. Again. This is a regular occurrence with me. I either don't sleep or I sleep all the time. I am living with CRPS. I try not to think of it as "I suffer from CRPS", I try and be positive. But on nights like these it is very hard. I sit here waiting for my Pain Management doctor office to open so I can tell them what happened over the weekend. Again. This is the second Monday in a row where I have to call them and talk about what is happening. CRPS stands for Complex Regional Pain Syndrome. It is rated higher on the McGill pain scale than cancer and amputation. It causes temperature changes, swelling, color changes, muscle spasms, atrophy and lots of other things. I could write a whole post on the muscle spasms alone, especially after the past 24 hrs. My CRPS is in my right foot, leg, hip, lower back and I have shown symptoms in my right arm also. It started in my ankle only. I will get more into my history ...