Apr 9, 2009

Have you heard of this?

I have been getting emails asking how I have been since my procedure in March. While I have emailed many of you back, I thought why not use my blog as a sort of information and awareness place of sorts for what I am going through. I promise I won't do it too often and I am always able to answer any emails, comments or even phone calls about this condition.

I normally don't share a lot of super personal stuff on my blog, it is for fun, stamping and goofy kid stuff. But I thought why not use a post to give you some info. Heck, it may even help you (or others) understand what someone close to you may be going through. Here goes:

In 2008 I was diagnosed with Reflex Sympathetic Dystrophy or RSD for short. Some may even know it as Complex Regional Pain Syndrome (CRPS) I call it a monster that is robbing me of my life and have been in excruciating pain now for over a year. I do not even know how to describe it to you other than the worse thing ever. I would not wish this upon my worst enemy...seriously!

RSD can occur after an injury. It is usually a really minor injury at that. Some may have a broken bone, some may have a work injury and in my case, after a surgical procedure and an ankle sprain. It is often misdiagnosed for a good long time. In my case, I was considered a lucky one. I was diagnosed within 6 months of the first attack by a great (somewhat goofy) neurologist in my area.

Basically, and as simple as I can put it, what happens is that after an injury, your nerves still think that they are hurt so they send messages to your brain that you are injured still. Then your brain tells your limb (my ankle) that it needs to compensate by constricting blood flow causing extreme swelling, coldness, and color changes. My foot and lower leg can literally swell over 3" and turn icy cold and purple within a matter of minutes.

All contact with my foot and leg is horrible. I am unable to wear socks. Shoes are a big issue. I do have one pair I can wear, boy are these puppies stretched out and rough looking. I only wear them when I have to go somewhere. Jeans & pants rub up against a ankle and send me into a tizzy so I am usually seen wearing capri's and shorts. Even at night when I finally go to bed, I cannot sleep with the sheets on my leg and the weight of the blankets send me back to the living room in tears.

The worst thing about RSD, well, besides being in pain 24/7 is that once you have it, it will never ever, not in a million years, go away. It can go in remission however, but it only eases some of the symptoms. Plus many physicians still do not know much about it.

As for treatment, oh boy! I am currently on a butt-load of meds, narcotics that would make a pharmacy jealous. I take anti-seizure meds to help calm down the nerves, this helps the swelling and fits of "tizziness" that I go through. Currently, I have Tunneled Epidural Catheter placed in my spine. This delivers even more pain meds and numbing agents into the epidural space to help relieve the pain. I have this in right now so that I am able to go to physical therapy where I am basically learning how to walk correctly all over again.

I have been going to The Cleveland Clinic for pain management and will be having a spinal cord stimulator put in before too long. This is a device that sends electrical currents to help trick the brain and help relieve the pain. I guess you can compare it to one of those TENS units that a Chiropractor uses.

People often call and wonder why I am sleeping all day, the pain keep me up all night, the meds make me drowzy and it seems the only way I can cope with the pain on some days is to just go to sleep for an hour or two at a time. Not only does this nasty disorder effect me physically, emotionally and mentally, it effects my family as well. The kids don't have a mom that is able to get up and run around, going to the water park, amusement park, bowling and ever going to the neighborhood park like they used to. I am ouchy, grouchy and some days down right mean. My husband has had to put up having a wife that is standoffish, grumpy and needing help changing and putting tape and dressings on. He has had to step up and become both a dad and a mom when I am unable to function because I am in bed from the pain.

Anyways, there you have it. Now you know why the posts are few and far between. Be sure to check out the youtube video once I get it loaded for more information or visit the following site to learn more:

http://rsds.org/

4 comments:

StampinCarol said...

Oh Awna! So sorry to hear of all this happening to you. And so glad you got it diagnosed! I'll be praying for you. Hugs, girl!

Coach Marla said...

I can completely understand what you are talking about.
I too have RSD, full body, along with some playmates for it....hahaha Playmates like: Fibromyalgia, Osteoporosis, Osteoarthritis in both knees, MS and something they are still trying to figure out....haahaha

I have been diagnosed since 2003 with RSD, and it started in my left ankle from a severe break.

RSD can and will rob you of your life 100%....IF you let it!!

There are ways to control all that seemingly uncontrollable pain. Trust me!

I have been living my life and loving it since I learned how to put all my diagnoses aside and carry on with my day as my goal sheet says I am to do that day. See, everything I have cause a great deal of pain.

And I get up every morning and Thank God for allowing me yet another day to enjoy the beauty He has provided.

I have accepted every diagnosis with open arms and an open heart, and they are all gifts that I happily accept.

Of course it took me some time to get to this point and it wasn't all a bed of roses....so I can relate to how you are feeeeling right now, but I want to let you know that even if it's not possible to ever be rid of, RSD, it is possible to "over come" RSD and have a fulfilled, joyful, and 'normal' life once again.

I Promise!!

Thank You for sharing this with us all, especially since you stated you don't normally share personal stuff on here. I appreciate YOU!!

Have an Amazing Easter Weekend!!

~God Bless~
Coach Marla
http://www.rsdcoach.com

Eva said...

My Dear....It sounds like you not only have angels in Heaven watching over you ...you may have just found a angel on earth...and Angel Coach Marla even left you a "link" to some additional hope. You know I love you and I think of you all the time (even if you still haven't received your birthday present LOL!)

Jovita said...

Awna I'm so sorry that you have to go through this pain. I watched a program about this a couple weeks ago, I think it was a recap from a previous news report. It was about a young girl and her family seeking treatment, apparently after she was bitten by spider and confined to a wheelchair she diagnosed with rsd, underwent treatment in another county.

Thanks for sharing what you've been going through and I'll keep you in my prayers.