Sunday, July 7, 2013

My amazing Live Loved experience!

Hi everyone!!

WOW... What can I even say? Where do I even begin?? This past week was one of the most memorable of my entire life... And anyone who knows me, also knows I do not make that statement lightly after all I have been through these past several years.

The past week feels like a whirlwind, and when I think back on the memories of my time at the National Youth Gathering, it feels dream-like to me.

Last Monday morning my mom, sister Michelle and I headed to the airport to begin our trip! We flew to Dallas first, and then connected to San Antonio. In the Dallas airport we saw several youth groups wearing "Live Loved" t-shirts and I started to get really excited to know I would soon be speaking to these very same kids who right now, had no idea who I was.



We landed and checked into our hotel, and headed off to the Alamodome to meet Pastor Nate Peregoy, the organizer of LiveLoved's Thursday night event. 




It was really cool to finally hug and meet him face to face! It's funny,  but since we had been working so closely together preparing for my speech for the past two months, it was more like old friends reuniting than strangers meeting for the first time.


Nate gave me a quick tour of the Alamodome and starting explaining to me in great detail everything I would need to know to get ready for my speech on Thursday... However, I don't even remember much of what he was saying because this is what I was focusing my attention on:



As I looked out onto the 30,000 empty seats in front of me, I have to admit, it was a bit intimidating.

Ok, very intimidating.

I thought to myself, "ok, well... This was certainly a fun trip! San Antonio seems like a nice city... Let's go home now!" ;)


After checking out the Alamodome we proceeded to the Rivercenter mall that was across the street from our hotel so we could relax and get something to eat. Outside of Macy's I saw a familiar face (and bald head :) I had the blessing of passing by Nathan Erb! Nathan is the Youth Pastor from my hometown church, Resurrection Garden City, NY. And I had not seen him since 4 years ago when he and Pastor Jeff Browning prayed over me before I left for Mexico! Talk about a joyous reunion!


Nathan is a huge part of the reason I was asked to share my story at the gathering. It's another one of those God-incidences that I love so much!

See, for the past two years, many people had been working tirelessly to plan this elaborate event, and as of 6 months ago, they still did not have a keynote speaker for the event on Fourth of July.

It 'just-so-happened' that Nathan was on the band committee for the National Youth Gathering and was working closely with the other organizers for the event.

He overheard that they were still looking for someone who had a unique story of finding their identity in Christ, instead of their circumstances.

And he immediately thought of me.

Nathan shared my story with Nate Peregoy & Megan Miessler, organizers of the gathering, and they were intrigued. They told him to contact me and see if this was something I would even be willing to do-- get up in front of 25,000+ people and share the most painful moments of my life and how God helped me through them.

My first thought was "umm...no!" , but my first words were, "absolutely, it would be my honor."

And so, that is how this part of my journey began. :)

Later that Monday night we attended the first of the four giant "mass events" that would take place during the gathering.


 The theme for the 2013 National Youth Gathering was "Live Love(d)," based on I John 4:9.  "This is how God showed his love among us: He sent his one and only Son into the world that we might live through him.”

So, Monday nights theme was beLoved, Tuesday was deLoved, Wednesday was Love Lived and Thursday was Live Loved.


These mass events were extraordinary. I have never seen anything like it before! Imagine, 25,000 people, on fire for Jesus, hands lifted high in praise, singing along with a huge live worship band onstage-- to music of all genre's, worshipping and loving God! The holy spirit and energy in that arena was incomparable to anything I have ever experienced. It was beautiful!





On Tuesday morning we ate Texas shaped waffles for breakfast and then prepared to venture out to explore downtown San Antonio.


However, before we did any of that, there was someone very special I had to go see-- my childhood Pastor, Bill Harmon.

I saw in the gathering guidebook that Pastor Harmon would be speaking about Christian politics in one of the ballrooms at the convention center... And I prepared to go surprise him there.

During the time I was sick, Pastor Harmon got the call to move from Lutheran Church of the Resurrection in Garden City, NY to a parish in West Virginia.

The last time Pastor Harmon saw me, I was in a hospital bed, unable to move, writhing in pain and unable to even communicate with him.

On Tuesday, I slowly wheeled into the room where he was speaking, and sat quietly in the back, waiting for him to make eye contact with me.

It took about 5 minutes, but as soon as he saw me, he ran over, hugged me and began to cry. And then, so did my mom and I.


It was so special to reunite with him under much happier and healthier circumstances!

On our way out of the convention center, I saw some amazing paintings of Jesus on display in the lobby, done by the "Jesus Painter." I went over and starting looking at them, when a man walked up next to me and starting asking me which painting was my favorite. I scanned them all and told him this one was my favorite-


The man took the painting and asked me what my name was. He proceeded to sign the painting to me, because as it turns out, he was Mike Lewis, the official "Jesus Painter" himself! How cool!!



Mike paints pictures of Jesus along to christian songs, sometimes even painting upside down, and then flipping it over to reveal Jesus' face! He is so talented and is such a nice guy!

Check out his ministry's site to see some of the amazing portraits he does- http://www.jesuspainter.com/

Finally, we set out to see San Antonio. San Antonio is a very unique city, in that it is all connected by Paseo del rio, the River Walk that runs underneath the streets of the city. The River Walk sidewalks are lined with restaurants, bars and shops and the whole feel of the city reminds me a lot of Mexico. :)


We went on a boat tour of the entire river and learned a few interesting facts about the city.


We went to see the historic Alamo, where the battle of the Alamo took place.


We passed by the Tower of America's too!


At Tuesday night's mass event (deLoved) Mia Koehne gave a powerful testimony about the way God has helped her put back the pieces of her once destructive and broken life. It was very moving and I was so blessed to get to meet her and pray with her.


On Wednesday morning we went back downstairs to indulge in some more Texas shaped waffles, and were surprised to see 6 golden retrievers sitting in the restaurant! Assuming they were disability service dogs, I went over and asked if I could pet them. It turns out, these are some very special puppies!


They are Lutheran Charities K9 comfort dogs. These dogs have traveled all around the country bringing comfort in moments when it is hard to find any. They went up to Sandy Hook Elementary school after the tragic shootings, they went to Boston to comfort those affected after the marathon bombings, they have gone to dozens of natural disasters and hurricanes to give people something to smile about. They are God's paws & feet to those in need!

Here we are with Luther, Ruthie and Isaiah-


They are adorable and so loving... And they all have their own facebook pages! Check them out at https://www.facebook.com/k9comfort

After loving on the puppies, we checked out the Henry B. Gonzalez Convention Center (located across from the Alamodome) The LCMS Youth gathering set up more events than I can even list... From rock climbing walls, a zip line, jumping castles, craft stations, sports, games, prayer blanket and bracelet making stations, and sooo many other awesome activities. They definitely thought of every possible way to keep 25,000 teenagers engaged and entertained!

These amazing kids also set out on mission trips each day throughout San Antonio to share Jesus' love with the city. They visited orphanages, fed the homeless, took care of abused animals in shelters and did various types of service events!

 Talk about living loved!

This is me with Pastor Dan Weber, who gave great sermon-type messages at each of the mass events. The world gets smaller and smaller, as it turns out that Dan's mother is Pastor Harmon's secretary!


Here we are with Jeffrey Meinz, who was a big hit with the kids! Everyday before the mass events began, Jeffrey held a "Gathering News" segment in which he made jokes and poked fun at certain kids from certain states (like Iowa ;) He really riled up the crowd and made everyone laugh with his crazy antics and great sense of humor!!



That afternoon, we ate lunch at a great Mexican place on the River Walk with our great friends, The Thompsons, who live in San Antonio.

...We felt right at home! :)



On Thursday morning there was a traditional church service held in the Alamodome.


If you can believe it, ALL 25,000+ took part in Communion... And in less than 20 minutes, mind you. There were 150 Communion stations throughout the entire Alamodome. It was intense and exciting.


After the service, we were invited to a special lunch in the Alamodome for everyone who was involved in the Mass event that night. By the time I rolled in, all of the tables were full, except for one. So I pulled up next to a kind looking man, who smiled at me and introduced himself as Mark.

He asked me where I was from, what I was going to be speaking about, etc, and we just made small talk until I mentioned that I was really excited to see the Sandpainter, who I knew was also presenting that night.

Mark smiled big, and informed me that he was the sandpainter!


Mark uses light and ordinary sand to create beautiful images that go along with bible stories, and the results are impressive, entertaining and beautiful as well!

Definitely take time to check out his website too- http://www.sandandlight.com/

A special prayer circle was held and I was put in the middle of it, around 50 people prayed over the entire event-- from beginning to end, for God to be glorified through this night. Pastor Harmon said a special prayer for me, which meant so much. Before I left, my Pastor here in Naples, Pastor Paul & his wife Maria, also had said special prayers over me, and I definitely felt them on this night!

Finally, the big moment had arrived. I was taken down into a green room, where I was mic'ed and prepared to take the stage to speak in front of 25,000 people.


My heart felt like it might come out of my mouth, I could hear the crowd getting ready, and I was so nervous, but in a good, exciting way!

I had the great honor of carrying the Christian flag down the aisle, after 50 other kids carried down flags representing each state and country who had youth present at the event! I believe there were 13 countries total, and people from every state of the US in the Alamodome that night!!


As the worship band played, "All Creatures of our God and King" I proceeded down the aisle carrying the one flag that unified all the others-- yes, the people at the gathering might be from different states or countries, but we are all part of the body of Christ!

When the song finished, I posted my flag and wheeled backstage to prepare for my big moment.

Part of the newscast that was done about my story by Patrick Nolan on FOX4 last year played on two 60-foot tall screens in the Alamodome.

When it finished, I was introduced by the emcee Sarah Salzberg- "Ladies and gentleman, welcome, Jessica Stevens."

As soon as I wheeled onto the stage the crowd erupted in applause and gave me a big standing ovation before I even said one word!


I was so touched that I thought I might start to cry and not be able to get through my speech. I choked back my tears and instead said, "oh wow, thank you so much, this is incredible... So surreal."

Being on a stage in front of 25,000 people is not an every day thing, and I had no idea what to expect! The lights were so bright and blinding that I really couldn't see much of anything, except a large sea of shadows bouncing off of the tops of peoples heads. My words echoed back at me, which was a little bit weird and took some getting used to.


I proceeded to speak about my long journey through pain and suffering. I told them how I was a happy, healthy teenager who played sports and enjoyed spending time with friends. Until, without any warning, my life as I knew was ripped away from me by an illness that has no cure.

I shared how I ended up in critical condition, paralyzed, unable to eat or move and trapped in a body full of agonizing burning pain.


I said how we were told there were no other options to save my life, and I had only a few weeks left to live.

How through a series of events only God could orchestrate, we found hope through an experimental ketamine coma treatment in Mexico, how God used Dr. Cantu and Dr. Barrientos as his healing hands and feet.

I shared how there were even moments when I doubted God existed, and how I couldn't understand why a loving God would allow me to suffer for so long.

I shared how in the moments I was near death, God revealed himself to me in ways I could have never thought were possible.


The more I talked, the more at peace I felt. Now, I have felt God's peace, comfort and love in many different ways and forms through the past seven years of illness, but being up on that stage, sharing the miracles and grace He has given and shown to me when I was most in need and undeserving, in front of such a large and spirit filled crowd, gave me a new God-feeling that I don't quite have a name for just yet....It felt as if Jesus himself was standing in the front row, smiling big, hands outstretched as far as the east is from the west, shining His light down on that stage for everyone to see what HE has done!

I continued to share about the long, hard process it was for me to learn and accept that my identity does not come from what I can do... But from Whose I am! There are so many things we place our value and worth in, and while these things may explain you, they do not define you... They are not your identity!

We only see what is in front of us right now, and sometimes, that can be really scary... But we are fully known by an awesome God who see's all, knows all and is above ALL!!

Our identity doesn't lie in who were are... But in Whose we are!


I shared how I still live with uncertainties about my future- will I ever walk again? Stay in remission? Get married? Have kids? Live a long, healthy life?

I explained that those questions are bigger than me, but they are not too big for God!


While I believe the answer to my questions is yes, the truth is, even if the answer is no, I will be ok because I live loved! I have the love of Jesus, I have His strength in my weakness... Whatever the future holds, that is all I need!

During my speech the crowd gave God and I THREE huge, long standing ovations for all the amazing He has done in my life... Which I am told is a record breaker for the National Youth Gathering events of the past 35 years!


After I finished speaking, the emcee Sarah re-joined me onstage and asked me a few follow up questions. The whole audience laughed when she asked me to explain why a 25 year old woman was sitting up on stage clutching a teddy bear :)


She asked me what got me through the hardest days, and what I am up to now that I have a new life restored to me. I explained that I am now studying to become a physician's assistant and work alongside the doctors who saved my life, and how even though this illness would never have been the plan I would have chosen for my life, God has used it for good and His glory.


When the event was over, it took me over two hours to make my way out of the Alamodome that night!!

Everyone was stopping to hug, high five, share their own struggles and take pictures with me! Kids wanted me to sign their backpacks and shirts and write little messages for them in their bibles! I felt like a celebrity! I felt so humbled to think that God trusted me enough to share His love with thousands of his precious kids!

Some guys even proposed to me... But unfortunately, I am pretty sure if I took any of them up on that offer, I would end up in jail, since they are still teenagers! Hahaha

As I made my way through the crowd I received a text from Nate, telling me to stay put at my location because the crisis team was trying to find me. Within minutes a pretty young girl named Victoria was brought over to me, hysterically crying, to the point she could hardly speak. We were escorted through the crowd and into a private meeting room, where she shared with me her long, painful struggle with paralysis and seizures from RSD. I was the first person she had ever met with the same condition, and she was so relieved to know she wasn't alone.

The next morning I was asked to meet with two other young girls, Michaela, who is also suffering from chronic pain, and Macy, who developed RSD in her foot after a surgery.

So many youth stopped to share their personal stories with me, and I am amazed by the strength and courage some of these teenagers have displayed in the face of tragedies in their short lives.

Their stories all touched me deeply and I am so glad God made these connections for us all.

Here are some pictures of me with my many new friends-


I came to the Live Loved National Youth Gathering hoping to inspire 25,000 through my story of God's love and miracles, but I really never anticipated how much this event would also change me. The love I felt while up on that stage was indescribable. I pray I never forget that feeling, I don't think I ever will.

As we left the Alamodome, we were treated to the most gorgeous and lively display of fireworks I have ever seen! It was magical, like God himself was lighting up the sky with joy and happiness over all of us gathered to worship him in this place!


This national youth gathering (http://www.lcmsgathering.com/) is held every three years. Some people were saying how cool it would be for me to come to the event in 2016 and WALK across that stage and give an updated testimony! And hey, you never know, with God, ALL things are possible!... I see it happening! :) 


The livestream from Thursday night was viewed over 7500 times, which just blows my mind! To God be the glory for every life touched through this event...including mine. 


It appears that the livestream has been taken offline... I am working on a way to get a copy and upload it on to youtube asap :)

Thanks so much for checking in and sharing this amazing experience with me! I am forever grateful to have had this opportunity!! God bless! Que Dios te bendiga!!

Live Loved!

Jessica



ps- I was so touched and overwhelmed by the amount of facebook friend requests I received after this event, that I decided to make a page specifically to keep in touch with everyone :) "Like" my page and say hi!
https://www.facebook.com/hope.for.jessica7



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Saturday, July 6, 2013

Live Loved- National Youth Gathering update & video! :)



Hey everyone!!

I just got back to Naples from San Antonio tonight, I have soooo much to say, so many pictures and so many God stories to share... But right now, I don't have the words to do this amazing experience justice.

All I can say is, my God never ceases to amaze me.

I went to the National Youth Gathering to inspire 25,000 youth hungry for God's love and truth, but I never anticipated how much speaking of the miracles God has done in my life, in front of this spirit filled crowd, would impact and change my life as well.

The love I felt while up on that stage in front of 25,000 of God's beloved children was enough to make my spirit explode!. I can't even explain it in words.... Except to say that I will never be the same, and I will never forget this feeling.

I will update again in a few days, once I am able to wrap my mind around all that occurred this past week, and the amazing ways I saw God moving in the lives of His children through this wonderful, fun, and blessed gathering! I know I had a blast!!!!

For now, I wanted to share the Live Loved livestream of Thursday nights event :) I had the honor of carrying the Christian flag down the aisle (begins around 1:12:00), and my speech begins at 1:20:00,,,, But if you have time, I really encourage you to watch the entire mass event, as I think it will change your life too.



Be blessed & Live love(d)!! I will post my next update soon!

Xoxo Jessica



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Saturday, June 29, 2013

Live Loved '13 is here!!

I can't believe it's already here! I am ready to leave for San Antonio to share my story at the National Youth Gathering!!

I am so excited to see what God is going to do both at and through this gathering!! I know it will be life changing for the 25,000 youth attending! And I know it will be for me too!

Here is the link for the livestream for all of the Mass events in the Alamodome. I will be speaking on Thursday (July 4th) at 7:30pm (San Antiono is 1 hr behind... So 8:30 Florida time :) so tune in!

http://www.lcmsgathering.com/Index.asp?PageID=15681

"This is how God showed his love among us: He sent his one and only Son into the world that we might live through him." 1 John 4:9

I will update again as soon as I am back! Let's Live Loved!! :)

Jessica

Sunday, June 23, 2013

El Norte- "Vive Milagro Medico"

Hola everybody! Another article came out in Mexico's El Norte newspaper today and I wanted to share it with you all! The article is in Spanish, but I translated it into English below :) Reporter Andrea Menchaca did a great job and I am very grateful to have another opportunity to spread awareness of this devastating disease.

Thanks for checking in!

God bless... or as they say in Mexico, Que Dios te bendiga!

Jessica


"LIVING MEDICAL MIRACLE"
By: Andrea Menchaca





Jessica Stevens believes in miracles.

Sitting in her wheelchair, the 25-year old from the U.S, moves, smiles and talks with enthusiasm, something that she could not do...until three years ago when an experimental research protocol at the Hospital San José Tec de Monterrey changed her life.

The native New Yorker arrived in Monterrey in 2009, as her last option for survival, her only remaining hope. For the past several years, she had lived in a hospital bed, unable to sit, walk or eat.


She felt like her body was on fire, like her head was being smashed against a concrete wall, and she had to use sunglasses and headphones to block out light and sound that caused her to have seizures.  She was very fragile, and only weighed 80 lbs.


"When I arrived in Mexico I was totally paralyzed, I had not been able to move my legs in four years, I could not eat and had been fed intravenously for three years," she tells El Norte during her most recent visit to the City.


After having visited hundreds of doctors, and being in a dozen hospitals in the United States, she had received all possible treatments without success.


Every medication had failed to alleviate the intense pain caused by Reflex Sympathetic Dystrophy, a rare, chronic neurologic disorder, often caused by trauma, characterized by pain of high intensity.

Jessica's RSD was triggered after a tick bite behind her right knee in 2003, during a summer camp, that infected her with Lyme Disease.

However, it wasn't until nearly two years later, when the pain and had spread through her whole body, that the diagnosis of RSD was made.

As a result of this disease Jessica suffered intense, sharp, burning pain in her body, headaches, muscle spasms, gastroparesis (a condition in which the stomach suffers paralysis), dystonia in the limbs, extreme sensitivity to any touch, light and the sound, excessive sweating, fever, weakening of bones and skin ulcers.



At this point, doctors said, 'listen, she is very ill, this illness has affected her entire body, there is nothing else we can do and we believe the best option would be to turn everything off-- her tubes and medications. We don't expect her to live another 2-3 weeks in this condition, they told me.' "recalls her mother,  Sarah Stevens, who is now writing a book of her experiences.

"Jessica was only 19 years old and I said 'no'... We will not stop fighting."

So when Dr. Anthony Kirkpatrick, a U.S expert on RSD, saw the seriousness of her condition, he recommended that treatment with a ketamine induced coma could be Jessica's last hope for survival.

However, the ketamine coma could not be done in the United States, as it is not approved there, it would have to be performed in Mexico by Dr. Fernando Cantu.


Jessica did not hesitate to try it, even though she would have to travel to a country that she had heard negative stereotypes about its health services, Jessica and her mother now confess.

"Basically, I would be medically induced into a coma, using massive doses of ketamine, an anesthetic and hallucinogenic drug, that would shut down my brain for one week. The hope is that when you wake up your brain re-starts again, much like when you turn off a computer that is not working and restart it." explains Jessica.

It is a very drastic and risky procedure, but Jessica was not afraid.

"I had nothing to lose, my life was a living hell: I was trapped in my body, in pain, unable to move or eat. I lost all of my friends, I could not go to school, all of these things that you think are important. I could not even watch TV or look at a computer, I could not talk to my sisters, I could not even wear clothes, why was I living? Honestly, I would have rather died than continue living like this. "

II. Rebooting her life


She arrived in Monterrey in August 2009 on a stretcher, in a special air ambulance that was paid through the charitable souls who have always supported the cause: family, friends, church and even strangers the Stevens family didn't know.


In Monterrey, she was received by anesthesiologists  Fernando CantĂș Flores and Luis Alberto Barrientos Quintanilla, leaders of the research protocol.


Because of her critical situation, the very next day she was taken down to the Intensive Care Unit and induced into the ketamine coma, which lasted seven days.

"I woke up very sick after the first coma. I had many complications, infections and terrifying hallucinations. I had amnesia and did not recognize my mother., "says Jessica.

For three months I could not see anything and I was put into a second coma, but not with ketamine, to try to recover my vision ".

After almost one year, Jessica finally left the hospital, but was still  not well enough to return home. She and her mom rented an apartment in San Pedro, and hired nurses to attend her 24 hours a day.

Only two weeks after her discharge, the City of Monterrey was hit by Hurricane Alex. Their apartment was flooded and soon Jessica contracted a rare infection.


It wasn't long before all of the RSD symptoms began to return: she was once again paralyzed, having trouble breathing, could not eat and her skin lesions re-appeared.

" I began running a high fever- up to 105 degrees, and I was rushed to the hospital by ambulance. Things soon went from bad to worse. I ended up having respiratory failure, my heart began to fail, my temperature dropped to only 91 degrees, and I almost died " tells the young woman, who is also writing a book about her experiences.


"To save my life, I was put into a second ketamine coma, which proved to be the long awaited miracle. When I woke up, I could move my legs for the first time, I could see, I could breathe, 90 percent of my pain was gone!! It was like being in a new body, it was amazing. God had healed me."

Now, Jessica is in remission, she has to be very careful that the disease does not return, as it did with her dear friend, John Roach, who also underwent this treatment in 2009. He took his own life recently, like many others suffering RSD choose to do, as this disease causes one of the most intense pains you can have, according to the McGill pain scale.

She now lives in Naples, Florida, along with her parents, Sarah and David, her sisters Katherine, 22, and Michelle, 16 years, and her beloved dog Molly. She now enjoys eating food by mouth and amazingly, after nine years of not being in school, she took an exam to enter into college, and passed it! Since May she has been studing to become a Physician's Assistant.


In July of last year she met President Barack Obama and shared her story with him, with the hope that the ketamine coma treatment can be approved in the U.S. Jessica also gave him binder with scientific articles, letters from doctors CantĂș Flores and Robert Schwartzman, RSD specialist and her story, photos and progress.


"In four years when I finish my studies I want to come to Monterrey and work with Dr. Cantu as a research assistant. I need to help others who suffer, no one should go through what I went through all these years. Doctors told me, 'there is nothing more we can do for you, you have three weeks to live', these are things that you should not ever hear, "she says.


"I came to Mexico and I feel like I was reborn here, I have a new life, I am grateful for this opportunity, but now I want to help other people to have this same chance. "


For now every six weeks she returns to Monterrey for small doses of ketamine and rehabilitation to regain strength in her legs, she was recently able to stand for the first time.



Jessica gives all of the glory and thanks to God first, then to her mother and then doctors Cantu and Barrientos, who have become like her adopted father and adopted brother in Mexico.



She also loves the mountains of Monterrey. "When I first saw the Cerro de la Silla, "she recalls," that mountain became the symbol of the beauty of God, who was here with me, telling me that I was not alone and that I could do this one more day, because there were days I could not anymore, but God was with me. "



(End of article)

--Sidebar--

Locals doctors, only in Monterrey, are working successfully on a research protocol to combat Reflex Sympathetic Dystrophy, a rare disease, which causes pain that is unbearable, in the aftermath of a trauma.

This condition is characterized by intense neuropathic pain, "says Dr. Fernando CantĂș Flores, who for five years has led the ketamine coma study. These patients feel a burning sensation, like a sharp electrical shock through their bodies, and there are noticeable changes in the affected limbs, such as edema or significant inflammation, discoloration, temperature, sweating or sweating little compared to the other end ".

The anesthesiologist trained at the University of Texas in San Antonio, where he completed a specialty in pain medicine. He explains that the RSD cases he has seen have been caused from the bite of an insect, or more typically, from a minor injury, like a sprained ankle or a wrist fracture.


"For these patients, even the slightest touch of clothing, bedding, or air, causes significant pain. They become hypersensitive to light and sound, so they need to wear sunglasses or headphones."

Cantu is also director of the Pain Management Center, located in Zambrano Hellion Medical Center, adds that as reflex sympathetic dystrophy or complex regional pain syndrome is a little known condition, the patients he sees arrive in critical condition and their diagnosis is usually delayed by months or even years.

Cantu explains that during the procedure, the patient is induced into a coma using  high doses of an anesthetic drug called ketamine, which is not approved for treatment for reflex sympathetic dystrophy, but it has worked because it is a potent antagonist of the nerve receptors responsible for RSD.

Patients and family members are made aware that this research is a protocol, not a treatment, clarifies CantĂș Flores, and that this is done to improve their quality of life, because they have tried absolutely every treatment and nothing has worked.

The ketamine coma is very risky. My patients are aware that the risk is very high. In our team there are three intensive care physicians: Rada Felipe Perez, Fernando Leal Castilleja and Luis Barrientos Quintanilla, and a cardiac anesthesia specialist Javier GĂłmez Valero.

CantĂș shares that together, they have treated about 36 patients from England, New Zealand, Australia, Canada and mostly from the United States, of which 65 percent have obtained very good results, but the rest, did not, and have continued seeking alternatives.


This protocol originated in Germany, and they were the only ones doing it until CantĂș and his team researched and consulted with the ethics committee and developed this protocol to allow it in Monterrey.


The ketamine coma now offers new hope to those who suffer with and  survive with this incurable disease.



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Monday, June 17, 2013

2 weeks until the National Youth Gathering!!!

In exactly 2 weeks from today I will be on a plane, flying to San Antonio to speak in front of nearly 25,000 people at the National Youth Gathering!!!

To be honest, when I was first approached to speak at the gathering, I thought "25,000 people... Ummm, no way- I can't do that!!" ...but the words that came out of my mouth were different than what was in my mind. My verbal response was, "It would be a great honor."

And that really is the truth about how my heart felt. It is a great honor to be able to share God's amazing work in my life with as many people as possible! I am so blessed to have this opportunity!

And so, the planning began. Over the past few months I have been brainstorming, outlining, drafting, editing and writing my speech and the videos/pictures to go along with it. Pastor Nathan Erb was an instrumental part in making this happen & Pastor Nate Peregoy, who is also an organizer for the event, has been an amazing help to me during the writing process!

I am happy to say...It is finished and memorized now!

It all seems surreal to me still, but I know as soon as I am there, it will all become very real... Very fast!!

I will be speaking at the Mass Event in the Alamodome on July 4th. The theme of the night is identity in Christ, not circumstances (how perfect, huh?! :)

It begins at 8pm and there will be a live-stream of the conference, for anyone interested in watching. As soon as I have the link for that, I will post it on here.

Please pray that God will speak through me, that I will not get nervous on stage, that God's presence is felt throughout the event, and that God will use my words to help everyone in that audience know that they are treasured, loved and His!

Thanks!

God bless!

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!