Sunday, November 14, 2010

November is RSD/CRPS Awareness Month...

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**

26 comments:

Anonymous said...

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!

Anonymous said...

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

Anonymous said...

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

Anonymous said...

"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."

Rosemary & John said...

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

Harv and Kathy said...

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

Ashley said...
This comment has been removed by the author.
Ashley said...

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

Nancy said...

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'

Anonymous said...

Great video. Thanks for posting it!

Anonymous said...

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

Fern said...

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

Anonymous said...

GREAT video- best I've seen!! Thanks for rasing awareness!!!!

Anonymous said...

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.

Anonymous said...

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.

Anonymous said...

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!

Marissa McCay said...

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

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Anonymous said...

Merry Christmas! Let the new year will bring a lot of money

Brittany said...

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!

Brittany said...

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!

Anonymous said...

Very interesting. Thank you.
http://www.box.net/shared/ey6jn1hqz3

Laura said...

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.

Anonymous said...

Great website, looks very clean and organized. Keep up the good work! antibacterial

bmoorefree said...

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

spinal cord stimulation for chronic pain said...

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!


Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)


As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!


Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.


Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.


Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!