Walk with CRPS

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 ...

Last week I decided to try the sympathetic nerve blocks for CRPS/RSD. I thought and researched and talked to others who had tried it and decided it was worth a shot if there was even a chance it would work for me.  The doctor told me not to get disappointed if I didn't get pain relief that day that it would take time for that to build with the amount of injections, that the first time if there was a chance for them to work I would feel warmth in my foot.  So I come home from the procedure on Thursday and doze all day long and discover how fantastic it feels to have a warm foot (this foot is always ice cold) and my hopes build that this is a good sign that I will have happy results as the injections build in me.  That evening my foot hurts so bad that nothing is helping and I sleep 1 hr.  Friday The pain is better in my bones and joint and therapy is easier but my skin is still so painful it is miserable but hey, Bone pain is better so I can live with it.  Now by...

Bear with me please, this rambling has a purpose.....   Those of you that know me know I have been dealing with ankle issues since July 2016 when I caved in and went to the orthopedic doctor because the pain would just not go away. After xrays and an exam it was determined I had posterior tibial tendinitis and was put in a boot for 4 weeks.  That progressed into a tear and later a tear in the cartilage and turned into a long drawn out ordeal that resulted in 2 surgeries.  The recoveries were hard physically and emotionally.  I thought I was prepared, I was not.  About 2 weeks into recovery on my second surgery I had an inkling something wasn't right in my foot and ankle.  I was having debilitating cramps/spasms in my foot.  They would twist my whole leg causing it to hit the couch/bed, where ever I was sitting at the time, and would last minutes.  I had cramps with the first surgery but not this bad.  When I would try and wiggle my toes,...