Friday, November 2, 2012

It's RSD Awareness Month Again!!






Hi everyone!!

I can't believe it is already that time of the year again! November is RSD/CRPS Awareness month!

Three years ago my mom began writing this blog as a way to keep our close family and friends updated on my progress as I underwent the ketamine coma in Mexico.


I never imagined that the story would spread as big as it has, and that so many people would read and follow along! It's just amazing.

In the process of sharing our story, something that has become very evident to us is that while a very severe,life-threatening, case of RSD like mine was, is rare, RSD itself is not as 'rare' as most might think.

I was shocked after my story was on TV earlier this year by the amount of emails and calls that came, and still continue to come! So many are suffering and sadly, a lot of these stories involve children.:(

Recently my sister Michelle wrote a report about RSD for her English class. The teacher asked her to stay after class and shared with her that last year he was diagnosed with RSD in his arm following shoulder surgery. He teaches everyday through constant pain! You would never know unless you asked.

Though every story is different, the main theme is always the same-- an unexpected (usually minor) injury, surgery or illness occurs and sends the nervous system into an overdrive of constant, unrelenting, burning pain, which usually spreads to other parts of the body, causes secondary neurologic symptoms and loss of function, and seems to respond poorly to most treatments available.




RSD is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. Worse than that of cancer, childbirth and even amputation! It's a vicious cycle that has been best compared to an engine revving out of control, even though the key is no longer in the ignition.

Hearing all these stories led me to look up the 'actual' statistics for RSD in the US--


I found that RSD is listed as a "rare disease" by the Office of Rare Diseases of the National Institutes of health. However, estimates of the number of people in the U.S. who suffer from RSD/CRPS can range anywhere from 200,000 up to 5 million, depending on the source of info!


Even if you averaged those numbers, that number is still much larger than that of many other more well known diseases that get alot more funding for research :(

So, Why does it occur? What pre-disposes some people to developing it, and not others? And why is it so hard to diagnose and even harder to effectively treat?




Right now, there are more questions than there are answers. RSD is a complex, mysterious and very confusing disease. It is incredibly hard to understand, for both regular people and medical professionals alike. But I have great faith that the doctors on the frontlines of RSD research and treatment are getting closer to those answers.

I am living proof that even an extremely severe case can be reversed and put into remission with the right doctor and aggressive treatment plan.  The hands of Dr. Cantu and his wisdom in the use of ketamine treatments saved and restored my life, and I have no doubt similar treatment would be very beneficial to others with RSD, but like any treatment in medicine, though for me, the ketamine has been miraculous, it doesn't work for everyone,

Hitting my foot recently was a wake up call for me and now I live very aware of the fact that any wrong move, injury or sickness can still cause a set-back. Even though I am 1,000 times better, There is still no cure... And that needs to change!

We need more research, better access totreatments, insurance to actually cover those treatments and most importantly, an increase in understanding.

With that said, Last week I had the amazing opportunity to listen to an incredible man speak. His name is Nick Vujicic and he was born with NO arms or legs!!!




Just when you think *you* have had a rough time in life, God has way to send you a message of just how truly blessed you really are.

 If you don't already know of his inspirational story, definitely check it out- 
www.lifewithoutlimbs.org

Nick spoke for 2 hours about God's plan for each life and about never giving up, because if you do, you will never see what God could do in your life and you limit his power to shine through your brokenpieces.

It was very emotional to hear, and reminded me in great detail of the darkest times of my illness where I was very ready to give up, if I had been able to. (Shoutout to mom for keeping me alive!)

RSD is called the 'suicide disease' by many doctors because of the high rate of it in patients dealing with this extreme pain. It's really not something you can deal with in your own human strength.

I would like to give anyone in pain the same advice that Nick signed to me (using his mouth!!) in his book, "LifeWithout Limits"-




"Your pain IS bigger than you and your pain IS bigger than your attitude... But your pain is NOT bigger than God! Trust Him to carry you, and one step at a time, He will. Don't give up!"




I think when I was in the middle of my worst pain that advice would have probably been the last thing I wanted to hear. But we are limited in what we can see...

I know if I could have seen back then in those dark moments how well I am doing now and how much I now love my life, it would have probably made some things a lot easier!


It get's better!

We don't see the future, but God does.

I am blessed and so grateful to be feeling so well and enjoying my life fully, but when I hear stories of others not doing well, I feel very guilty.

I won't even pretend to understand why God allows a disease like RSD/CRPS to exist.

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 behalf to relieve our suffering and lead us back to better, less-painful lives.

If  I can come back from how bad I was, it gives me so much hope that everyone else can too....I would never say that unless I believed it 100%.

Thank you to everyone who has helped me to gain my freedom from the pain of RSD! Please continue to pray for all of those who are still suffering and for a cure to be found, soon!

Also please remember in your prayers all who have been affected by Hurricane Sandy, especially my family and friends in my hometown of Garden City, NY!  Possessions are replaceable; homes can be rebuilt and fixed... I am just so thankful to God that all who we love are safe! Hopefully they will have their electricity restored soon too!

God bless!


Jessica

**To post a comment, click on "comments" below**

9 comments:

Fern said...

Great info. I wish we could get Canada on board with some of these radical treatments that seem to be the best help. Thanks to my GP, I have been getting higher meds which help in their own way. Don't underestimate the help a compassionate doctor can make to a person in such high pain! Dr Cantu was energizing just by believing and caring!
I am going to have to get my wisdom teeth out and this week I will meet with a Canadian dental surgeon and am hoping that since he is used to working with ketamine he will give me a shot at it. To have to leave the country just to try to keep myself safe seems to be my most difficult challenges.
I have listened to youtube posts of the man with no legs and arms. He is amazing! We can all accomplish much more if we change our perception as we navigate through it. A challenge to all who face difficulties in their lives!
Love you lots. Glad you are enjoying the life you were cheated of for so many years!

Anonymous said...

Jessica, you are an inspiration to me, thank you for sharing your struggle against pain and suffering and this road that you traveled. I know Nick's story and have watched his videos! Its amazing!

I love that you are able to hold so tightly to your Faith in Jesus Christ, and share that love with others.

I pray that your struggles in the journey you traveled will help others to understand this disease more, to find a cure!

Rosemary and John said...

Dear Jessica,

You are such an eloquent writer. I never could have imagined how far you would come when I last saw you in Mexico. You have literally come "back" to the world of the living and to those who love you. God clearly has His plan for you. I think that spreading His word, and spreading the word about RSD/CRPS is why you are here. You have helped so many people have HOPE again and really, isn't that what we all need? Seeing how far you have come gives us HOPE that better days can still happen. Your amazing Mom and Dr. Cantu never gave up on you, not for one second. God bless them!

What a honor to meet Nick and listen to him speak. You both are very inspirational and remind us of how lucky we really are. We have so much to be grateful for and we need to always remember that there are so many people suffering so much more than we are.

Our prayers are with you and all the hurricane victims. Our family is collecting clothing, foods, housewares, etc. that will be taken back to N.Y. after Thanksgiving by my niece, Carly who lives there. We are all very fortunate in PA and cannot imagine the suffering of those in New York New Jersey and beyond.

Thank you for writing a beautiful update and as always, we send you all of love and many xoxoxoxo's!

Happy Thanksgiving Sweetie!

Rosemary & John

Kevin Scardifield said...

Worldwide Awareness Campaign Please Help

People and sites from around the world are coming together to turn November 2013 into International RSD Awareness Month, currently only America has a National Awareness Month.
Please spare 5 1/2 mins to watch this video but be aware you may find some of the images disturbing.
http://www.youtube.com/watch?v=MviVcjWZDts
it is vital that you watch it to the end
If you are newly diagnosed I strongly suggest you do not watch it.
If you live in the UK please sign http://epetitions.direct.gov.uk/petitions/31344
E-mail the link to your MP asking why since being informed on 30/10/2010 David Cameron, Nick Clegg and The DOH have refused to do anything about the situation.
You can also send it to some members of the House of Lords.
http://www.parliament.uk/mps-lords-and-offices/lords/
No matter where you live in the world can you please sign here http://www.pledgebank.com/RSDCRPS
http://you.38degrees.org.uk/petitions/worldwide-rsd-crps-awareness-campaign
http://www.thepetitionsite.com/460/118/995/worldwide-rsdcrps-awareness-campaign/
http://www.change.org/en-GB/petitions/goverments-worldwide-un-world-health-organisiation-find-the-millions-of-un-misdaignosed-rsd-crps-sufferers-across-the-world
http://www.ipetitions.com/petition/worldwide-rsdcrps-awareness-campaign/
http://www.gopetition.com/petitions/worldwide-rsd-crps-awareness-campaign.html
http://www.activism.com/en_GB/petition/worldwide-rsd-crps-awareness-campaign/40439
http://www.causes.com/causes/800617-worldwide-rsd-awareness-campaign/actions/1700679
http://www.petitionbuzz.com/petitions/worldwidersdcrps
http://www.petitiononline.com/RSDCRPS1/petition.html
http://www.communityrun.org/petitions/worldwide-rsd-crps-awareness-campaign-1
https://petitions.whitehouse.gov/petition/take-immediate-action-inform-medical-professionals-existence-rsdcrps-most-painful-incurable/SFkd2cS6

If you live in another Country can you start your own petition and send the link to your own Politicians
If you are willing to commit to spending 15mins a day for 4 weeks then 15mins a week to help spread this then please e-mail me on.
RSDFighter@hotmail.co.uk or join me on facebook
Kevin

JW said...

What a great list of RSD supporters and petitions!

You have got to reach out to the webmaster of What is RSD? to get them involved too!

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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!