RSD/CRPS Awareness Blog Hop

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You know you want to cool down your foot fast when you stick it in a hotel toilet!



When Deanne at Deanne Creative Juice and Dusti at Scrappin with Cricut decided to do a RSD/CRPS Awareness Blog Hop; I knew I had to participate!!! I unfortunately know all too well about it. September 2006, I got CRPS (complex regional pain syndrome also known as RSD (reflex systematic dystrophy). There are 2 types type I (without nerve injury) & type II (with nerve injury). I got it immediately after foot surgery. I had a tumor in a nerve in my foot. During surgery they removed that section of nerve. The surgery when fine but instead of the pain getting better, it got worse...much, much worse! Before I was even out of the recovery room there were signs of trouble. My foot turned blue. (The first of many times). To try to explain the pain of RSD/CRPS is difficult, it is like putting your foot in a fire while crushing it in a vise. Sometimes it's more like an icy burning cramping achy stabby pain. If you don't have it you won't get what I mean and don't try, just be thankful you don't. Thankfully, I was diagnosed early and was able to get much needed help. I also found some great doctors, but I had to search for them. I had never heard of RSD/CRPS and it's amazing how many medical personel (even doctors) are unfamiliar and uneducated in such an important disease. I found that I needed to be an advocate for myself and do as much research as I could. I couldn't always rely on my doctors and I definitely couldn't rely on my body anymore. One Dr. wanted to do another surgery on my foot, no thanks (I found out later that would have made it worse)! Another, said I would be wheelchair bound and wanted to fill me with meds (Not ME)! I finally found someone who knew I was a fighter and I received my first Lumbar Sympathetic Spinal block that day. Tried two more blocks...not much relief! Then tried an Algoline Catheter . That was an experience. It is an IV that goes in your lower spine and delivers Buvicane (like Novocaine) to numb my left leg/foot. The idea was to make my body forget it's in pain so it stop sending the pain signal. Well needless to say it didn't work. I can also say that I gave it a good shot. I had it in for almost 3 months and that's tough when you are trying to do anything with one leg asleep all the time. It took the edge off the pain but didn't do what we had hoped. Lastly, when I had that removed I had a Lumbar Raidofrequency Neuronomy performed which has helped the most, I think. During this entire experience my foot was hypersensitive to any touch, vibration, heat and so many other things. I couldn't stand or walk for any distance. It was nearly impossible to wear sock, let alone shoes. Taking a shower was like showering with pins. All that's in the past now. I have come a long way.

Today almost 5 years later, I am doing MUCH, MUCH better. I don't look at how I'm doing today compared to yesterday. I look at how much better I am today compared to last year or the year before that. I am still extremely heat sensitive (most RSD patients are cold sensitive) I have to shield my foot from the sun always or it will flare up. The heat thing is probably my biggest challenge...it's everywhere and in the least expected places... heat from a car engine, sunlight coming in a window, hair dryer, oven, socks or shoes, blankets, even the heat from my own body can set off my foot if it is touching another part of my body. I usually sleep with my one foot outside the blankets. I wear a Lidocaine patch when I need to walk more than usual or stand, but I can walk (not far but I can). I don't take pain meds because I want to remember and experience my life to the fullest. I have learned a lot of other ways to deal with the pain. I also have a TENS unit that I use to "distract" the nerve signal. I use meditation, distraction (scrapbooking), nutrition, physical therapy among other things to keep the pain under control. But I would have to say the biggest thing that helps is a positive attitude! Never give up, this is a disease that there is no cure, it is forever. I don't mean that to sound somber, you just learn how to relearn how to do things. I do not blame the doctor, I am not on disability, these thing just sometimes happen. You have to make the best of what God gives you. I am a positive thinking person. I was very go-go- go before, now I am able to stop and smell the roses. One of the best gifts it has given me is SCRAPBOOKING!!! I didn't really scrapbook until 4 years ago. Then I started to do it to distract from the pain. For me it's more than just scrapping it's therapeutic. RSD/CRPS has also taught me a lot about myself and others. I am especially grateful for Tim who has been my rock through this. He is more than just my husband, my friend and my soul mate and for that I blessed.

One of the things that he always says is that I have SUPER POWERS now. I can tell you where every heat source is, I have super smell, hyper sensitive touch, I can even tell the difference in flooring (concrete, asphalt, tile, wood, etc.) by how quickly my foot flares.





Now for the PRIZE!!! I am giving away a package of Tim Holtz Idea-ology Grungeboard Shapes (176 swirls texture shapes) and a package of Tim Holtz Idea-ology Fragments (48 squares and rectangles). Just leave a comment to enter to win. Sorry no picture...Blogger decided to not upload my pics. Tomarrow morning I will randomly draw a winner!

84 comments:

creativedawn May 20, 2011 at 12:31 AM  

Hi Christine...
It took doctors 18 months to diagnose my condition as RSD ... due to nerve damage in the brachia (rt bicep area)... I have the ANS to help disrupt the pain signal and pain meds when I need them. At one point, I was so dosed up on the meds (still had the pain) that I was completely useless and it took ever increasing doses to alleviate the pain, which never went away. It took two years to get off the pain medicines - I still had children to finish raising and the pain meds were madness. About 4 times a year, I get the stellite ganglion blocks and most recently - Ketamine infusions ... Nothing last very long and I must say that the time spent anesthetized is the only time that I am unaware of the pain...I'm pain free! Well, I try to stay positive and use breathing control and the ANS as much as possible. Now I'm facing other health issues because of my inactivity ... obesity, diabetes! No worries, am addressing those issues as well. With God's help, I shall conquer these issues and be healthy (but in pain) lol... I'm hoping that getting healthy will also help the pain.... Maybe, maybe not.... Your story is such an inspiration and I'm happy to have stumbled on it....I do follow you.... Anyhoo...thanks for listening! and God bless you on your journey!
hugz

Mary-Beth May 20, 2011 at 12:37 AM  

Christie, I read your post with amazement, that there was such a disease (don't know why I was amazed at that knowing full well how our bodies can go wonky on us) and that you have learned so well how to deal with it. Good for you, you are a very strong woman. I hope through research more methods of relief, if not a 'cure' can be found.

DK Spins May 20, 2011 at 1:50 AM  

Hi Christie, Thank you for sharing your story, and I loved your pages as well as the video. 13 years ago I had surgery to remove a Morton's neuroma caused by 20 years of wearing high heels (the nerve grew back ). 6 months later I broke my ankle (same foot) & had more surgery. Couldn't understand why my food felt like it was on fire, being stabbed thousands of pins. My ortho dx'd RSD & prescribed ibuprofen. Like you I'm super sensitive to heat & sometimes I feel like a horse who's floundering - someone get me to a cool stream LOL Osteoporosis has now set in, along with limited mobility - but that could be the arthritis or fibro - hard to say. I just say that I'm structurally unstable. Distraction helps (sometimes), and as you said keeping a positive attitude. Blessings to you and again thank you.

Karen May 20, 2011 at 1:50 AM  

I had no idea there is such a disease. That has to be very challenging at times but you are a very strong and positive person. Thanks for sharing this info with us

Kwillis_15 at yahoo dot com

Roxanne May 20, 2011 at 1:54 AM  

Christie,
You have my empathy! I have degenerative disc disease with neuropathy in my legs especially the left. I live in constant pain and have for 11 years. But I had back issues from age 16. I'm now 57. I have been disabled since 2000. I have been on every medication, shot and treatment. Very few helped. I know what to do and not do and my body lets me know when it's been pushed too far. It's frustrating but there are people worse than me. Hopefully, your life will continue to be fulfilling and you will continue to provide us examples of your talent.
Hugs and Best Wishes!
Roxanne

Scrapp'n Nana May 20, 2011 at 2:51 AM  

Hi Christie;
I never heard of this disease before. Thank you for letting me know about this and I will keep you in our prayer and I will do that for other people who has this disease. I have a sister that has a disease that has something to do with all the nerves in her body and she is in pain 24 hours aday and they can't do much for her neither. She too is in our prayers. I wish that I could do something for you,but I know I can send prayers and be here for you if you need support. Just ask me I'm a good listener. I hope that your life well be better and you will get strong as each day comes and goes. Thank you for sharing this wonderful blog with all of us. What a wonderful talent you have it you have done a wonderful job with it.

My husband is Terminally ill, because of his heart. He has to take about 80 pills aday and is in a lot of pain if he doesn't take them. His heart is so bad that they won't let him have any kind of surgery. He has one knee that is rubbing bone to bone so that makes a lot of pain.

I can't say I know how you feel cause I can't but all I can say is that we can prayer for you and hope God will easy some of that pain for you. Now that I wrote a book I will get off.

Sincerely

Donna Scrapp'n Nana

http://scrappnana.blogspot.com/

www.mycmsite.com/dmdegraw

want to look, I would love you too.

love2quilt95 May 20, 2011 at 2:52 AM  

Christie,
Thank you for sharing your story. I had knee surgery about 6 yrs ago to improve the quality of my life. I couldn't keepup with my daughter, garden, cook for events at my church, where I also volunteered for other things. Unfortunately my surgery did not go well. I not only have the same pain I started with but paind in quite a few more place. I also came home with oxygen 24/7 for the rest of my life,no one will say what went wrong. As a non smoker, this has been on of the worst parts of this all. The surgery seems to have triggered so may things,I now have a heightened sense of smell, hearig and touch. My husband calls me the princess and the pea. I feel every wrinkle, even a small piece of lint causes pain. Around home I wear my clothes inside out so the seams won't bother me. I'm so afraid to go to another dr. I just don't trust them. I take 1 lortab in the evening. I refuse to take anything during the day since I drive my daughter to ad from school. The pain in my legs, feet and sometime hands will get the best of me.Too many issues to go into. But crafting is such an outlet. It allow me to escape for a little while, to dream and create. Reading blogs, tutorials, youtube, ustream has allowed me visit with fellow crafters. A pleaseant place to be. Thank you!!!

Debbie Harris May 20, 2011 at 3:01 AM  

Thanks for sharing your story and making me aware of a syndrome I had not heard about. You go girl, with your positive attitude you will not let it get you down!! Thank you for the opportunity to win a great prize.

qwiksave May 20, 2011 at 4:19 AM  

Wow! I had no idea about this condition and am truly humbled about what you and other people on the video -and those that have replied- have to go through. I wear two hearing aids which I have worn for over 40 years but that is nothing in comparison. I fully admire how you can keep such a positive frame of mind. This is a very valuable lesson. xx

linda May 20, 2011 at 4:48 AM  

Thank you for this post, for educating others about the syndrome. What a great idea of a blog hop to raise awareness.
I experience acute and chronic pain on a daily basis, (from a different condition), have a closet full of shoes I'll never wear, pants with waist bands.. no matter what size.. are like torture, forget pantyhose.
While the doctors all have ideas of what to do to relieve the pressure on the nerves.. I find the best relief is to take my pain meds, go in my craft space, and create!! Like you, I find it to be so uplifting and freeing.
Also, I would suggest that people who are experiencing such pain to just express it in their own way.. artistically.. without worry about how others will respond to their art. If your hands are not the source of pain get your hands dirty..really get into trying to put on paper just what the pain feels like. finger paint is wonderful for expression. Or write, sing, whatever is the creative relief. It helps!

Anonymous May 20, 2011 at 4:50 AM  

Wow. You are refreshingly hon and I love it. I widh so much i could move my jaw right now snd call you. Keep on going. I totally get you and I love it! Eva vaughan

shersl84bed May 20, 2011 at 6:11 AM  

Its amazing what people can go through and still have a smile on their face. The photo with your foot in the toilet and the smile still on your face says it all.
What an aweful thing to have to go through.

Sher
ShersL84bed@aol.com

Ellen ♥ CardMonkey May 20, 2011 at 6:12 AM  

Christie, you're an amazing person driven by an indominable spirit and love for others above self. They say that "God doesn't give you any more than you can handle" ...and you have shown us that your strength of character is truly a blessing. By posting as you have, you have educated us about this disease as none before you; I especially appreciate that you've taught me the difference between seeking sympathy and offering awareness when we are faced with life's many challenges. Thank you for that.

God works in mysterious ways. Praise Him for helping us through the challenges we face and the goodness that results.

Christie, when your days are difficult, know that your "therapy" of scrapbooking has taught us more than just about papercrafting. It's shown us that friendships can span the universe, and we're all simply human. Keep the spirit, and the faith.

Much love,
Ellen ♥ CardMonkey
www.cardmonkey-business.blogspot.com
E-mail: cardmonkey@comcast.net

P.S. Should I be picked to win the blog candy, please pass on your generous gift to another. I've already won BIG TIME from your posting and need nothing more than you've already given me. Your words are heaven-sent to me today. Thank you, thank you again.

Claudia May 20, 2011 at 6:18 AM  

Christie,
Thank you for making more people aware of this desease. So sorry for your trouble and I wish I could help make the pain go away. I'll keep you in my thoughts and prayers.
claudiamatzke at hotmail dot com

Sharon May 20, 2011 at 7:13 AM  

Thank you for sharing your history with us Christie. The positive attitude you portray is helping others who deal with similar issues. I also have one of those somewhat invisible syndromes called fibromyalgia. After spending a couple of years in a near-zombie state from all the medications that didn't even phase it (other than to make me not feel anything) I finally got off the meds and learned to listen to my body. Through my own research and experimention with herbs, vitamins, food changes and various forms of capsacin (that hot pepper product that fools the nerves in to forgetting about the pain)and of course crafting, I am able to function

What many people, both those with a disease and without, don't realize is that we quite literally have to go through a grieving process due to the loss of our self as we once knew it. Some of us even get to the point where we don't want to live any more and that is when it is so important to have the support and understanding of friends and family. My husband, like your Tim, has been my cheerleader throughout all of this and continues to be my rock. Let's cheer them on... hip hip hurray!!!

Blessings and gentle hugs...
Sharon
lilypadsis at cox dot net

Gloria Westerman May 20, 2011 at 7:24 AM  

Wow Christie! I had know idea that you suffer every day....my heart goes out to you and to anybody that suffers this disease...I suffer from Fibromyalgia and my "Tens" help my alot.....You are in my prayer.....but you are also my hero for always giving and sharing....in spike of pain.....you are a very special person.....God Bless You!!!

Elizabeth May 20, 2011 at 7:38 AM  

Christie,

Thank you so much for sharing. I have the same issues except mine is caused from Behcets.(Inflammation of the blood vessels-arthritis of the blood vessels) If anyone with these symptoms also has gential and oral ulcers not caused by herpes they should look into Behcets. http://www.behcets.com

I am going to post your blog on my Behcets group because most of them also have many of the same symptoms as RSD. Thanks for sharing:)

Elizabeth
http://visionsofpaper.blogspot.com/

Cathi May 20, 2011 at 7:53 AM  

Christie, have been following your blog for a few months and am impressed with your attitude. I was diagnosed with MS a few years ago and one of my feet is a bit like yours...goes between burning and icy numbness...ugh... Luckily mine has been stable for a while and with two small girls I just keep going as much as I can! Thanks for educating me on your condition, I had never known about it!

debpaint16 May 20, 2011 at 7:56 AM  

Thanks, Christie, for sharing your brave struggle with all of us! I also suffer from Fibromyalgia & Degenerative Arthritis, and a botched knee surgery, like some of your other posters! I wish you continued courage & love on your journey! Debbie
debpaint16@aol.com

wwilloww May 20, 2011 at 8:22 AM  

All I can say Christie is "ditto!" Everyone above described your post and the video so well. I already knew about your spirit and spunk and gentle heart!!! I wish you many long, happy, as pain-free as possible years ahead with very little time spent with your foot in the toilet!!! YOU ARE THE GREATEST!!!

Neet May 20, 2011 at 8:31 AM  

Thanks for sharing hyour story and thanks for the chance to win.

Emily May 20, 2011 at 8:37 AM  

Thank you for educating all of us about RSD/CRPS. I already thought you were pretty special because of all the great crafts and videos you share, but you are truly an amazing woman! What a wonderfully upbeat and positive attitude! You will be in my thoughts and prayers.
EmilyinGeorgia

sockamom13 May 20, 2011 at 8:37 AM  

Wow, I give you credit for "marching" on in the face of such pain. I have worked in an ER for 23 years & have never heard of this. I am also amazed you do this without the drugs that drs are so willing to give. Good for you! Amazing how the human spirit can battle on in the face of pain & adversity. That said you must be an extreeeeeeme amount of pain to put your foot in the hotel toilet. Please tell me you bleached the toilet before your foot went in it!!!LOL

Denise May 20, 2011 at 9:11 AM  

Thanks for the invite on facebook!! Glad I stopped by! Great information. You are awesome! I too use crafting as therapy! It is definitely a place to go to just let go and forget for at least a little while that you are in pain! Keep your brain busy on something else and it helps! I have been a follower for sometime now and am always enlightened by your style!!
TFS

Denise in WA
www.rndhud6.blogspot.com

savyjade May 20, 2011 at 9:16 AM  

Thank you so much for sharing your courageous story. I too live in constant pain. Crafting is such a wonderful therapy for us all. If I could work again I would love o be an art therapist! The benefits can be amazing! Every time I hear of someone else who has to struggle through life with a pain disorder my heart aches! You are such a strong woman. You and all the others are in my prayers always!

Cozy Crop House May 20, 2011 at 9:17 AM  

Thanks for sharing your story and your attitude. This condition was unknown to me~great idea to have an awareness blog-hop.
Your positive spirit is a great inspiration.

Bonnie May 20, 2011 at 9:20 AM  

You are an inspiration Christie. You keep such a positive attitude and are so amazingly creative and generous.

Thank you.

bjohn3237 at aol dot com

smilesºÜº May 20, 2011 at 9:20 AM  

I read your post and was in amazement that there is actually someone else with RSD. When I had kneww surgery 18 years ago, I developed RSD. The pain is manageable now but I have gone through a tremendous amount of pain therapy to get there.
Thank you for your story. I wish for you to heal completely and enjoy life.
Robin Fishback

crafterGM May 20, 2011 at 9:26 AM  

Christie I never new that it ever exsisted. Thanks for sharing your story and sorry you had to experience all that pain glad to here you are doing better. Gloria M

Retta May 20, 2011 at 9:44 AM  

I have nerve damage on my left side. I so feel for your journey through this. Thanks you for sharing and know I will be praying for you. God is so good. Even though He asks us to endure something, there is always a blessing given besides! Much love
Retta

macpat May 20, 2011 at 9:46 AM  

Never heard of this condition before Christie but very interesting. I have suffered from knee problems the past 10 years and lived with the pain for the greater part of those years till knee surgery last September to replace knees , didn't know what it was like to go without pain till now. Thank you for your website, I enjoy every last post you do. Pat M

lolo May 20, 2011 at 9:52 AM  

I had no idea of this disease, thanks for sharing your story. This blog hop is a great way to raise awareness.

Cathie May 20, 2011 at 10:01 AM  

Hi Christie, People like you inspire me. Going through life with as much pain as describe and still be able to smile, be creative and not let it get to you. I do understand some of the pain, but not to your extent, and like you I do my best everyday to smile and think of the blessings I receive everyday.
Thank you for sharing your story.
Blessing, Cathie

crotnem May 20, 2011 at 10:06 AM  

Hate for you to be in this predicament! Great video I must say really touches the heart! Please
enter me into your contest Christy!
Hugs~ Cheryl

Janet Hamilton May 20, 2011 at 10:17 AM  

Thank you for sharing all of this. You had mentioned a post-surgery foot problem, but I had no idea of what you've been going through. You are such a talented and admirable person--I am sorry this has happened to you.
I have enjoyed your blog ideas so much. I will pray for you.

Jeannie May 20, 2011 at 10:35 AM  

You always have such beautiful projects on your blog. I'm sorry that you are suffering in any way. Good for you, for not going the drugs route. Have you ever tried EFT? I has worked amazingly for me on various issues.

Anonymous May 20, 2011 at 10:35 AM  

Thank you for sharing apart of your personal life with us, I enjoy reading and watching your video's, they have taught me so much . I lost my handicapped daughter in 2007, a sister in 2008 and a brother in 2010 I too have felt pain but a different kind of pain I would not know how to go through the kind of pain you go through everyday of your life God bless and keep on sharing. You have given me the courage to start scrappin again and for that I Thank you dearly. colleenfroud@yahoo.com

The Scrapoholic May 20, 2011 at 11:00 AM  

thanks for inviting me to this hop! its always nice to find people who understand your pain that like you said unless you have it you can't understand it cause its such a hard "pain" to explain. you can find my story here http://jillsshoes.blogspot.com/ there isn't enough awareness or support out there for this I hope one day with all of us telling our stories there will be! TFS! sending you {cyber hugs} i share your pain and frustrations too!

Linda Edwards May 20, 2011 at 11:20 AM  

Hi Christie, I had never heard of RSD/CRPS until reading about it on your blog. Now I know what it is. Thanks for
putting it out there for our awareness of this painful condition. As you can see from the comments, you are not alone and
people appear very supportive. Good luck,
Linda

Raven May 20, 2011 at 11:30 AM  

Christie sorry tohear you have to deal with this pain. I appreciate you sharing your story. I had my ankle broken in 3 places last year and now I have shooting pain with the burning sensation when I get tired. I am going to speak to my Dr. about this. I hope it is nothing but better to know and deal with it than just suffer with it.

I am enjoying your blog and visit regularly just don't comment much.

Gail May 20, 2011 at 11:52 AM  

Way to go Christie. You are right about "it's all about attitude!"

Anonymous May 20, 2011 at 11:59 AM  

You have an amazing story Christie and what strikes me the most is that, despite your debilitating condition, you are able to overcome it and maintain a positive and productive outlook on life. It is awesome what God can do in our lives, isn't it? Keep up the great job! You have a wonderful talent of bringing that positive attitude and teaching all of us how to do the things we love to do. God Bless you! firstmatehook@yahoo.com

Christine May 20, 2011 at 1:12 PM  

Thank you to you and the other ladies for bringing awareness to something so horrible and horribly misunderstood. Thank you also for sharing the positive ways you still spend your time to not let this beat you.
Sincerely,
Christine
lovingthelakes@yahoo.com

jjocarlson May 20, 2011 at 1:44 PM  

Thank you for bringing awareness to this disease! My prayers are with all of you! God Bless~ Joyce

cathy2 May 20, 2011 at 2:35 PM  

Pain is often so hard to describe and can be so frustrating relating it to your doctor. I'm glad you persevered and found a good one to take care of your issues. Thank you for sharing and bringing awareness of your condition.

Cathy

Michelle May 20, 2011 at 3:42 PM  

OMG.... I love the picture of your foot in the toilet.... Isn't it a joy when you finally find a doctor who knows about RSD.... I read your story some of it was like I was writing it myself. Thanks for doing this hop.
I'm also a new follower of yours.
Thanks for sharing.
Michelle
mpetrovich23@yahoo.com

http://peanutbutterandjellydesigns.blogspot.com

I would love if you would stop by my blog and be a follower if you like what you see.
Thanks.

Sandy May 20, 2011 at 4:50 PM  

Love your pages - and I personally believe that finding scrapbooking saved my life! It distracts me and helps me to be useful. This RSD is NOT going to win with me either. You go girl!

Trix May 20, 2011 at 5:23 PM  

Christie, I need to offer you my sincere apologies.
Just the other day I was thinking how everything looks so perfect in your life and that you probably never experienced real misery.
How wrong I was!
It teaches me not to pass judgement based on what you see and do not know. A thing I always thought I didn't do :-(
I am blessed with e good health and I think I would not have the courage to face this kind of an ordeal the way you have.
Fortunately you are a very strong woman with a lot of caring and supportive peaple around you.
I look at you with other eyes now and wish you all the best!

Shelly Schmidt May 20, 2011 at 5:48 PM  

Wow- you are so wonderful to pass this on- I bet it will help many! I have NOT had this, but had a journey with Keinbock's in my wrist, and many in my online Yahoo group do suffer from this. Chronic pain (which I do have ) is no fun- and it is hard to stay positive...Bless you! You are very talented creatively and I admire your work so much!

DIANA L. May 20, 2011 at 6:17 PM  

Christie, Thank you for sharing your story. I am in this hop also, stop by. leave any info in the comments that you want
http://dianamlarson.blogspot.com

Deanne May 20, 2011 at 7:44 PM  

Oh Christie, what a wonderful post, Christa is so pleased to read all the comments! I am sorry that the directions email was late, I was at Dusti's this week. I made the email last night (Thursday), sent it and went off line. When I got online this morning I discovered that their is a glitch in my road runner account. I could receive but not send.
Thanks again for the great post!

Barb A. May 20, 2011 at 8:10 PM  

Thanks for sharing your story. Great post! Keep your positive outlook. Thanks for the opportunity to win an awesome giveaway!

BethA May 20, 2011 at 8:21 PM  

Christie...Thank you for sharing your story. I, like many others was unaware of this condition. Your story, along with your blog is very inspirational and educating. I like the fact that I can learn about new things, crafting and otherwise from your blogs. Prayers to you and others with this condition.

BethA
bethwulff at gmail dot com

Angel May 20, 2011 at 10:07 PM  

Good for you Christie for doing the research and being your own advocate for your health. As a 28yr sufferer of Fibromyalgia, I know first hand how a misunderstood illness can cause such frustration when the medical professionals don't have a clue how to help so they either tell you it must all be in your head or simply prescribe medications that can't touch the pain. It is important that you take charge of your own health, and study as much as you can to improve the quality of your life. Once again you are an inspiration to your many blog fans, this time not just for your artistic creativity but for your positive outlook and wonderful inner strength to continue to reach for the life you want. You rock girl!

CraftCrave May 20, 2011 at 10:09 PM  

Just a quick note to let you know that a link to this post will be placed on CraftCrave in the Cutting category today [21 May 02:15am GMT]. Thanks, Maria

Terry Kelling May 20, 2011 at 10:27 PM  

Thank you so much for sharing your story. I just happened to come across your blog not too long ago and have enjoyed your creations. When I clicked on your post in my google reader tonight I saw RSD it caught my attention. I too have RSD/CRPS, going on 22 yrs. To keep a long story short, mine started from a hip surgery, I ended up with nerve damage and RSD. In and out of hospitals and bed ridden for 2 yrs. It took the doctors 15 yrs to figure out what was wrong with me, by this time it went from my hip to pretty much my full right side of my body. I ended up having a pain pump implanted 6 yrs ago with pain meds and buvicane. It gives me some relief but my pain levels are pretty high still every day. I so understand the socks, pants, blankets and just about evrything makes the pain so much worse. I am really cold sensitive. I take the elastic out of all my pants, when I can wear them. Been doing alot of dresses lately. lol Can't wear most shoes, bras and no socks at all. Anyway, the only way I have gotten through this with a positive mind is my family, my wonderful husband (Kevin) and my creating. I always say, If I can keep my hands and my mind busy, It helps to take my mind off of how bad I feel. Scrapbooking and crafting is my therapy too.

Thank you again for sharing your story. It's inspiring to hear from other RSDers and how they deal with it and get through life. Hugs and Blessings to you and everyone else that live with this disease.

Laura May 20, 2011 at 11:04 PM  

Yikes....I've never heard of it before. I wish you comfort and total relief. I guess you can be thankful it didn't effect those creative hands of yours!

Laura

Anita May 20, 2011 at 11:42 PM  

Reading your story touched my heart. I have my own health challenges that cause pain sometimes lots but have learned to live with it. I am glad you have found some relief and a way to live with it.

Jani May 21, 2011 at 2:11 AM  

Girl, I KNOW your pain. I describe my daily struggle with nerve damage as something akin to someone jabbing a cattle prod into my spine all the time. I have regular nerve blocks, radiofrequency rezoidomies, spinal cord stimulator that is nerver turned off...but most of all I have a loving God who holds my hand through it ALL. :)

Reading all these stories makes me realize that I am not alone. Would love to start an online support group for crafty ladies that struggle with pain. If interested, contact me at papercompulsions at gmail dot com or drop by my blog at papercompulsions.blogspot.com

patriciadavis May 21, 2011 at 6:54 AM  

Bless you and thank you for sharing. You have sparked my interest in this disease as well as educated me. Being your own advocate is one of the most important points. My own experience has shown me that. Wishing you pain free days.

Amy Macak May 21, 2011 at 6:55 AM  

Christie,
I have been a nurse for 31 years and have not heard of this condition. You are an inspiration with your attitude and creativity. Thank you for sharing this information and you will be in my thoughts and prayers.
Amy
ajmacak at gmail dot com

Lisa May 21, 2011 at 8:09 AM  

Christie, thank you for bringing awareness to this. I've not heard of it before, but I remember when my DH was having severe foot pains after coming back from Iraq and the doctors couldn't figure it out--we kept it in prayer and after a year the pain started to disipitate. But it wasn't anything like what you go through. I think learning about these things helps us to better understand what others go through, if only a smidge. I have a friend with a similar problem as yours and I wonder if she has the same issue?? I'll be sure to send her a link to your blog so she can talk to her doctor about it. Appreciate you opening up this very personal subject. God bless!

loverslanelodge May 21, 2011 at 8:11 AM  

Christie thanks you so much for sharing your story with us. In addition, to help educate, the public, about this horrible, and painful disease. About 3 months ago a friend’s 10yr little old girl was diagnose with this. To say we have had a struggle finding doctors who know and understand this disease is an understatement. And no one not even the school takes her pain serious. They have even made the poor girl stand through an entire gym class. Her is in her ankle and foot and it turns blue/black regularly. She tries to tell the adults how bad it hurts her and they make fun of her by mocking or belittling her. The family turned to me to help them find answers for a disease they had never heard of. I spent days and days researching everything I could find for them and then breaking it down to normal language so they could understand just how bad it is for her and I even found a few clinical studies that hopeful we can get her into. Because she is so young, they do not want to do most treatments and they limit the amount of pain meds so she hardly gets any relief. After all the research, I was more than shocked that this disease can affect so many and yet not be well known. That will hopefully change thanks to people like you who are doing all you can to get the word out there about this disease so people can learn more about it and hopefully soon they will have even more treatments for this painful disease. Again thank you so much for doing this hop Debi

Trisha May 21, 2011 at 8:18 AM  

Christie, my mom has neuropathy pain in her feet. I know your condition is very different, of course, but I can sure sympathize with you. I'll be remembering to pray for you as I pray for her every day.
You offer a lot inspiration and enthusiasm for scrapbookers and paper crafters like me, Honey. Keep going!
trisha at gvtc dot com

Anne May 21, 2011 at 8:42 AM  

Thanks for sharing your story. You really do have to be in charge of your own health. Before today, I had never heard of this.

BobbisTreasure May 21, 2011 at 8:57 AM  

Chronic pain issues are so misunderstood! Thanks for sharing and educating!
BobbisTreasure@aol.com

...a/k/a DJScrappiness... May 21, 2011 at 11:06 AM  

First of all, let me say how sorry I am that all this has happened to you, and that it continues to be something you have to deal with on a daily basis. My niece damaged a nerve in her back and arm, due to an accident several years ago. The pain and symptoms she describes are similar to what you have shared here, so I will definitely be forwarding your story to her.

Secondly, NOW I know how you are able to accomplish all the amazing things you do! So glad you have scrapbooking and crafting to help you deal with all this - especially since you've been so willing to share it all with US! Your willingness to trust the Lord in all this is truly inspirational and it is obvious He is blessing your faithfulness with creativity, a loving and supportive family and group of friends. (that creativity paid off when you thought to stick your foot in the toilet, didn't it???!!!)

Thanks for who you are and all you do!
Doris

Maggie May 21, 2011 at 11:25 AM  

WOW, just WOW! You are an amazing person. I have followed your blog for about 10 months. I love your work and am grateful for you sharing with us. We all have issues to deal with and I am glad others share. Hang in there!

Kelly May 21, 2011 at 11:43 AM  

Sometime life throws things at you and it takes a lot of strength and courage to make it through life. Both my children have autism and while it is difficult, we have embraced it and work very hard to help our children every day. No matter what life throws at us, we can make it through.

Anonymous May 21, 2011 at 11:59 AM  

Christie,you are a blessing and an inspiration to me.I have RSD/CRPS and i have been trying to be as positive as i can be and thankful that i am overall healthy! My battle has not been as long as yours.Mine is in my foot,but has also traveled up the back of my leg.It all started with a ruptured tendon which requires surgery.Of course it just had to happen at work,so you know what that means....a long drawn out battle with my Doctor and Lawyer fighting the BWC! Almost a year later all is resoled and i WIN my case,but in worse shape and still using a wheelchair/crutches!! Have had the Lumbar sympathetic blocks,therapy and the meds and no relief. My Pain Doctor is encouraging me to have the Spinal cord stimulation system put in,but surgery needs to take place first.
Thanks so much for listening to me,nobody else understands,really!
bcolson1116@hotmail.com

Anonymous May 21, 2011 at 12:07 PM  

Thank you for increasing awareness of this condition. I wonder how many may be out there suffering with this without understanding the cause. Hopefully this information will get to the right person/persons to give relief to those who are struggling through efforts like yours. God bless.
bginga@bellsouth.net

Anonymous May 21, 2011 at 1:14 PM  

Thank you for sharing your story, you are such an inspiration to others. You have inspired me and now knowing what you go through really amazes me. I have heard of your condition my neighbor/friend has had it for years. And the two of you are so unbelievable, always a smile on your faces, enjoying life. Thank you for being you. God Bless.
sandyluvstoscrap@hotmail.com

williase May 21, 2011 at 2:08 PM  

WOW! You've endured a lot but through it all you're still a creative loving soul. Love your ideas and everything you do. Thanks for sharing this part of your life.

Michele May 21, 2011 at 6:14 PM  

thank you for sharing your story Christie. i am in awe of your strength and perseverance and i wish you every blessing. i'm glad for the beautiful art that you make, especially since it gives you joy and release. all the best. xo michele

Mary's Museum May 21, 2011 at 6:39 PM  

Christie, I have just come back form multiple medical appointments in Brisbane. just noticed your post.
I had a scuba diving accident 19 years ago, got the "bends" which gave me AVN.
I had 5 joints replaced with 12 replacement surgeries plus removal of necrotic tumors in both legs so then I became very inactive.
I had a pain pump inserted into my spine which left me with an infection leading to Encephalitis, spent 7 weeks on life support,so the pump came out, and I tried numerous Ketamine infusions but I had a dreadful reaction to that stuff. any way after every medicine under the sun, I am now under control for the most part. but its 19 years I have had this and had to raise a family also.
all I can say is thank god for pain clinics, and the faith to just keep going, thats when I found this craft.
thanks for making the awareness.

Mary's Museum May 21, 2011 at 6:48 PM  

Oh and I forgot to mention my local GP who I trusted ended up telling me it was all in my head, and I would end up on the streets with no family etc as a drug addict. got shot of him quick smart !!!!

Sue May 21, 2011 at 9:53 PM  

Wow Christie!! I was just reading about this yesterday, someone posted about it on the Meningioma Mommas Support group. I am in great health except for my "benign brain tumor" I'll never forget talking to a gal on the phone a few years ago she worked for Bonfils Blood where I use to donate all the time until I found out I had all these strange health probs so I thought I had better hold on to my blood, anyway she was concerned about me and she ended up telling me her story--and I thought how awful and I had never heard of such a thing! Keep on Keeping on!! Love your blog and your art! Sue

Anonymous June 15, 2011 at 4:45 PM  

Thanks for spreading the word about RSD. I have it in my spine. Fortunately the Neurologist I was referred to (after first seeing GPs, ER dr.s, pain specialist, endocronologist, rhuematologist, internal med. specialists) had done his studying directly under Dr. Robert Schwartzman (considered "Father of RSD Research"). Most people who have even heard of RSD think it happens only in the extremities (hands, feet), few realize it can occur in the spine too. Keep Smiling, Girl! I know what you go through and will also Smile during my Trials.....

Karla June 22, 2011 at 6:27 PM  

Hi Christie, you have received my e-mail regarding my miracle treatment. Anyone that needs to contact me for my RSD treatment can contact me at Justamother@me.com. I used a photo facial treatment 9 times over the last year. My pain level is now a 1. Feel free to contact me.

CRPS News July 30, 2012 at 9:04 AM  

That's the spirit Christie! And may God bless your husband! There's no getting away from CRPS at the present time but sufferers should not let hopelessness into their lives. If you've got it, you must build the strength to cope and fight back, because that's what you have to do.
tens crps

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