Please watch the following video about RSD:Hi everyone!
Wow! I can’t believe that there has been over 70,000 views of this blog! That is just… amazing. I know that many of you who follow this blog are not just following my journey with this disease, but are also, unfortunately, dealing with it on a personal level, whether through your own battle, or that of a family member. November is RSD/CRPS Awareness Month, so in honor of that, I wanted to just share a little about the disease.
Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness, in my case, it was triggered by neurologic Lyme Disease. The hallmark symptom of RSD/CRPS is burning pain... so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire.
There currently is little knowledge and understanding of RSD/CRPS, even within the medical community. Because of this, RSD often goes misdiagnosed during its early stages, which is when the disease is most easily treated and can be put into remission. If not treated promptly, aggressively and correctly, the RSD pain can spread rapidly.
I have met so many people along my journey who are also struggling with this disease. I have seen many improve, only to relapse because of limited access to effective treatments. The suffering with this disease runs so deep- it not only physically effects the patient, but the entire family suffers the emotional consequences that come along with this type of unimaginable, unrelenting. 24/7, pain.
Right now, there are certainly a lot more questions than there are answers for many RSD patients. It is a complex, mysterious and very confusing disease.
I believe that Ketamine can definitely be a big part of the answer, for so many. And for now, it is probably the best weapon we have in our battle against this horrible disease, for me, it has been a God-send, however, we need a cure.
For me, it has given me the chance to have a life again. I am re-discovering my love of music, movies, people… and food! I ate spaghetti and meatballs for dinner for the first time in years (thanks Mom- it was great!) Each day my mom helps me out of my bed into a recliner chair (thanks Betty!) I can now stay in it for almost 3 hours! I know to many, these things may not seem like a big deal, but for me, after being completely bedridden for 5 years and fed through a feeding tube for nearly 3, every step in the right direction is just amazing! As Dr. Cantu so eloquently puts it, “Small Steps= Huge Advances!”
I am so blessed and so thankful to be doing so much better. It hurts to think about all of the people who are out there suffering so greatly with this monster of a disease.
We need more awareness of this devastating disorder. We need much more research to find the underlying cause(s) of RSD and identify ways to treat and prevent it. We desperately need a definitive and long-lasting cure.
My hope and my prayer is for answers, for all of us, who are dealing with this illness and for the doctors who are working so hard on our behalves to relieve our suffering and lead us back to better, less-painful lives.
In Christ,
Jessica
For more information on RSD:
International Foundation for RSD/CRPS
RSD Fact Sheet (from the National Institute of Neurological Disorders)
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) Website
“Counting on a Coma”- FOX News
**To post a comment click on "Comments" below**
23 comments:
You are so brave and inspirational! Thank you for all you do for others to raise awareness!!!!
You are all in my thoughts and prayers, Always! Blessings!
Thanks for the update, Jessica! You have definitely come a VERY long way. We are just thrilled at the GREAT progress you are making! We thank God for the answered prayers!
Your blog is very instrumental in getting the information out there not only for those who suffer but for their families and friends as well. It helps people to understand the slowness of the recovery progress and also that there is HOPE (and where our hope is from)!
There are many doctors working on this (more than we know). We hope and pray that CRPS/RSD will be eradicated like polio and small pox (with God, all things are possible).
Keep taking those small steps, Jessica. I know you will get there.
With love & prayers,
The Turners
Hi Jessica!
We are all so glad that you are doing well! You "small steps" are really becoming huge advances! You are a very inspiring person and we are so glad that you have been able to do things you haven't done for years! We are very happy for you! We will be thinking of you especially this month. You are in our prayers. Hope to see you back in Florida soon!
The Thompson Family
"Impatience is...what we begin to feel when we start to doubt the wisdom of God's timing or the goodness of God's guidance."
Patiences is "a deepening, ripening, peaceful willingness to wait for God in the unplanned place of obedience, and to walk with God at the unplanned pace of obedience."
Both quotes are Piper in "Future Grace."
Oh Jessica,
You do our hearts good!
What a way to start our day! Thank you for giving us strength, hope and inspiration. We have not had a "bad" day since meeting you. No matter what is going on, we think of you (and your Mom) and say "Look at what they have done and what they have overcome" and then, how bad can our day really be? There is no limit to your potential and with God's help and grace, you will achieve all your dreams. All things happen for a reason, even when we do not understand them. I can see now the blessing we received when our paths crossed. Thank you and thank you Sara Gina for bringing such joy into our lives! May God continue to bless you all and answer all your prayers.
With much love always,
Rosemary & John
Jessica
That is a great post and I am so thankful that you are continuing to have those really big 'small steps'. To sit in the chair for 3 hours and eat spaghetti and meatballs is quite an accomplishment.
Continuing to pray for God's strength as you walk this road.
Kathy Roosma
Your progress is incredible and I'm constantly amazed at everything you've done and continue to do. I love you so much and think of you every day.
XO
Ashley
Hola,
So I think you are a Mexican who talks with your hands now...eh!! What great progress. I bet your Mom's spaghetti was the best meal yet! Can't wait to share a meal with you real soon!
Love and kisses,
And Jose'
Great video. Thanks for posting it!
Dearest Jessica and Gina, This is more amazing news!!! Jess, thinking of you eating spaghetti and meatballs makes me so happy- before long you'll be eating Grandma's delicious cookies!! And sitting up in the recliner, no sunglasses, no headphones- miracles really are happening!! Gina, your heart must be bursting with gladness!! I am just so grateful for these steps forward. We will keep on praying- and thanking GOD!!!!! Love always, Angel xoxoxoxoxoxoxo
I think I know who needs to be my computer tutour! Always amazes me how you imbed stuff and link info. I watched the video and got Harrison to show me how to add it to my facebook page before he left for school this morning but not sure I get what I did. LOL
I am so thrilled to hear that you can sit in the chair for three hours now and look forward to skyping with you real soon! I want to hear all about the foods that your fabulous mother is cooking for your enjoyment and am thanking God that you can once again enjoy them.
I know that this has been a long hard journey for you and so while I thank God for the steps in a positive direction, I also seek His favour in providing you with the energy to keep pushing onward, the ability to feel the love that is all around the world for you and that you would find strength in each day to face the hurdles along the way!
God bless you today, my friends
GREAT video- best I've seen!! Thanks for rasing awareness!!!!
Jessica,
You are helping a lot more people than you may think! You have great value and I know you will accomplish all your dreams.
Here is an interesting article:
http://www.rsds.org/2/library/article_archive/pop/Nama_PainPhysician_2010.pdf
The Use of Sub-Anesthetic Intravenous
Ketamine and Adjuvant Dexmedetomidine
when Treating Acute Pain from CRPS
Dexmedetomidine is an alpha 2
agonist similar to clonidine with analgesic properties that can be used in combination
with ketamine to provide additional analgesia in CRPS.
Happy Thanksgiving, Jessica & Sarah!
We give thanks to God for the healing thus far and hope and pray He will get you the rest of the way!
May you have a wonderful Thanksgiving with your Mexican family!
Dear Jessica,
It is so wonderful to hear of the progress you are making. You are such a courageous, inspiring person! Thanks for keeping all of us updated on your blog. I think of you often and I am keeping you in my prayers.
God Bless,
Love, Marissa
Merry Christmas! Let the new year will bring a lot of money
Hi Jessica! I have full-body RSD and saw Dr. Kirkpatrick for his 3-Day outpatient Ketamine Infusion in April, 2010. The Ketamine Coma was recommended for my case as well, but I'm looking into another outpatient infusion while we raise money for the coma. I've been suffering since 2006 and can't even imagine going through what you've been through for so many years and at such a young age!! My prayers are with you!! I would love to hear about your progress after having had the coma. My webpage is www.helpbrittbeatrsd.org -If you wouldn't mind, would you contact me through my site and let me know how you're doing? I'd really appreciate it! I hope 2011 will bring you peace and freedom from the excruciating pain of RSD!
Hi Jessica! I have full-body RSD and saw Dr. Kirkpatrick for his 3-Day outpatient Ketamine Infusion in April, 2010. The Ketamine Coma was recommended for my case as well, but I'm looking into another outpatient infusion while we raise money for the coma. I've been suffering since 2006 and can't even imagine going through what you've been through for so many years and at such a young age!! My prayers are with you!! I would love to hear about your progress after having had the coma. My webpage is www.helpbrittbeatrsd.org -If you wouldn't mind, would you contact me through my site and let me know how you're doing? I'd really appreciate it! I hope 2011 will bring you peace and freedom from the excruciating pain of RSD!
I just want to wish Jessica all the best with her treatment and recovery.
I also have severe full body CRPS/RSD (12 years for me) but the Ketamine Coma isn't an option - I've had three inpatient treatments using the 'Awake' treatment and all have made me very ill.
I truly hope you are now in less pain and that 2011 brings some better times for you.
I'm sitting here crying because I feel my life slipping away from me, bit by bit. So many of the things that I used to do are as far away now as Mars, in so much as they are out of reach for me. I feel defined by my pain, yet the people around me will still ask "so, are you over your 'thing' yet?" I'm the Pastor's wife...and the only keyboard player we have, as well as the worship director. The people at church see me once a week, dressed up and hustling to do my part. They don't realize that Sunday is the only day I actually get dressed or do my face and hair. They don't realize that the smile they see takes so much effort, that my feet are burning and my back feels like it"s breaking...or that I can't wait to get back to my recliner and just let go as the pain overwhelms me again. I know that I have much to be thankful for...my husband and son. My parents and church family, but right now, in this minute, I just feel so lost in this awful 'thing'...and I don't know how to explain it, over and over and still face those questioning faces. I'm so tired. Please, whoever reads this, pray for me. I know that the Lord Jesus understands, I don't know why He's allowing this but I know there's a reason...but sometimes I just can't reason it out that far and I just feel lost and alone. If you understand all of this, I'm so sorry, because it probably means that you have it too.
I don't mean to whine, I just needed to say it to someone who understands. Thank you for sharing your journey with us...it helps.
Betty M. , Franklin, WI
Imagine living in a body that causes you pain 24/7 - that's CRPS. There's no getting away from it at the present time but sufferers should not let hopelessness into their lives. A growing community of people and doctors are doing their best to help and come up with a cure. Don't lose hope Jessica!
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