Monday, December 24, 2012

MERRY CHRISTMAS!!!




HAPPY BIRTHDAY JESUS 
& MERRY CHRISTMAS EVERYONE!!!

It's the season of miracles, so I thought I would share a big one with you all...

On 12/12/12, I stood up for the first time in SEVEN (7!!!) YEARS!!!! 

...And in Monterrey, MexicoThe birthplace of my miracle!

For the past year, I have kept a list. Not a 'bucket list' per say, but a list of things I want to accomplish, do and experience now that I have been given a new life.

Some things on my list are big, longer-term, future things, some are smaller goals of things that I can do now or in the near future, and some are just random, fun things I want to do just to say I did :)

But really, to me, they're all big things! Over this past year I have been blessed to be quickly crossing so many things off of my list, that I had to keep revising it and adding more! 

Up until 2 weeks ago, one of the bigger things still remained on my list and I was determined to have it crossed off by my 25th birthday. I just didn't know how to even attempt it without getting seriously hurt.

So, while I was down in Monterrey, I decided to take my chances and ask Dr. Cantu his thoughts.

The conversation went something like this-

"Hey, Dr. Cantu! Can I ask you something?"

"Oh no" (smiling) "Ok, sure."

"I want to try and stand up!"

---Long silence.--

"Well, What do you think...Can I???"

--Big deer-in-headlights stare.--

Followed by, "Well, Jessi, you know your bones are-"

"Fragile. I know. But I am ready!! I have been working so hard all year going  in the pool and I am a lot stronger now. I think I can do it."

--More silence. Dr. Cantu begins looking at his iphone and avoiding my eye-contact. (great....)--

"I really want to do this as a Christmas present for my grandma. She has prayed non stop for my miracle. She's 89 years old and she is losing her vision quickly.... I want her to see me stand, you know, while she still can..."

Well, That did it!

He looked up from his phone, smiling and shaking his head. And he finally gave in!

"Ok. Ok! You can try. BUT--this has to be done safely and under supervision. You haven't stood in years, so your brain needs to be taught. If I just let you stand here, now, you will get hurt."

Dr. Cantu said he would set up a time with Dr. Garza, a rehab physician at AVE for the very next day!

"We will see what he says. Dr. Garza will show you what to do and you will have to agree to do what he says and not push beyond that... Ok?"

"Yay! Agreed!Thank you!!!!!!!"

"...Oh, And please wear a Green Shirt tomorrow so I can take a picture standing with you!" :) 

For the rest of the day I was so excited. I probably said to my mom close to 1,000 times, "Can you believe I am going to stand tomorrow?! Mom, can you believe that?! And on 12/12/12!!" Poor mom, she's a saint. Really.

The next day mom and I went to the AVE Clinic, where I receive all of my treatments and met with Drs. Garza, Balli and Cantu (who was wearing one of the many green shirts we have gifted him :) 

Dr. Garza did a quick evaluation and decided that the best way for me to try and stand would be using parallel bars so that I could hold my weight with my arms, which he said were very strong! He told me that I could put as much pressure as I was comfortable with on my left leg when I stood up. I was told that for now, I should not put any weight at all on my weak right leg.

Dr. Cantu and Dr. Garza adjusted the parallel bars to the correct height while Dr. Balli wheeled me into position.


For the first try, all three of them would hold onto me and lift me up. If that went well, I could sit down, rest, and try again on my own!

As the doctors grabbed my arms, I couldn't contain my excitement. My hands starting sweating and shaking.

The overly-cautious part of me turned on and I decided I wanted to see someone else "test" out these bars for sturdiness before I put my full weight on them!

Dr. Cantu, as usual, stepped up to the task. When he didn't fall flat on his face, I felt safe to proceed!

 I looked up and said, "ok, I'm ready...but don't let me fall!"

They promised not to let go and up I went!!!




The first words out of my mouth when I stood up were " Look Mom!! Oh wow!! This is so cool!!"

I felt like I was flying! I thought I would get dizzy, but I was perfectly fine. It felt almost natural!


I then turned to my left and saw Dr. Cantu at eye-level for the first time!! He actually looks a lot different from up at that angle! Everything looked different seeing it vertically!


 "Hey Dr. Green Shirt, I am taller than you!!!"  Hahaha

I then was feeling very confident and said, "ok, you can all let go now!"

My crazy mom, who was dual taping and photographing every second of this, yelled out, " ummm no way Jess! Guys, don't you dare let go of her!"

"Are you really sure?" Dr. Cantu asked me.

"Yes!! I've got it! Let go!"

So they did!!

And I stood on my own for about 30 seconds!!


I sat down, rested, and stood up again 2 more times, until my legs were shaking too much to try again! We decided to call it a day.


It was one of the most fantastic days of my life! Every 'first' has been miraculous and so special, eating my first food, sitting up, swimming, etc, but standing definitely ranks very highly on that list! And I know walking one day will rank most high!

(I AM taller!)

Dr. Garza said right now I have about 5% of the strength needed in my legs to walk. 5% may not sound like a lot, but it actually is!

After spending 6 years in a bed, & 3 of those years completely paralyzed, unable to move my legs at all, I was told by so many doctors I would never have use of my legs back, ever. And look!! I am standing!!! That in itself is a miracle!

Christmas 2010 my dad and sister Michelle came to visit me in Monterrey and saw me sitting up in a recliner chair for the first time! The looks on their faces were of pure joy, shock and amazement.


Tonight, on the eve of Jesus' birth, I will stand using my walker in front of my entire family for the first time! I can't wait to see their reactions, especially my grandma's face!!


I know it sounds cliche, but we must not forget the reason for the season! All of the glory, honor and praise for every part of my recovery goes directly to the birthday boy, my healer, savior and redeemer, Jesus Christ! We believe in miracles because of His birth! We only live because of His life! May we love and adore Him like it's Christmas everyday!

Thank you to everyone who prayed this moment into being. Your prayers have been, and are still, being answered!

All I can say is look out 2013...  My list is recently revised again and God willing, I will soon be crossing off many more things! :)

Merry Christmas & Feliz Navidad to all!

Happy birthday Jesus!

In God's love,
Jessica

"Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard." Isaiah 58:8


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Thursday, November 22, 2012

Happy Thanksgiving!!!



"Give thanks to the Lord and proclaim his greatness. Let the whole world know what he has done." 1 Chronicles 16:8

Happy Thanksgiving everyone!!! 


I have begun typing this blog, deleted what I wrote and re-started about a dozen times now... I have so much to be thankful for that writing it all out seems overwhelming, if not impossible.

My gratitude runs so deep for so many reasons! 2012 has been the best year of my life so far! And today I get to celebrate my first Thanksgiving at home with my family in many years!!! I even helped prepare some of the meal with my mom and grandma! I can't wait to eat it all in a few hours!!

I know this Thanksgiving will be one of the most special yet!

As  I am sitting here, I can't stop thinking about my most favorite Turkey Day memory...Thanksgiving 2010.

Just 2 weeks after getting out of the hospital, after a very long 16 months inpatient, I celebrated in our Mexican apartment with my special-hero-angel-doctors, Dr. Cantu, Dr. Luigi,  Dr. Rainbow and their families.

That meal was prepared by my mom with sooo much love, admiration and gratitude for these amazing doctors who had saved my life and become our Mexican family.

To watch the hands of the doctor who saved you, carve the first Turkey you are able to eat in 5 years, was really beyond words and my wildest dreams!

It was all so surreal back then, and even more so now this year as I prepare to sit around our table, in my own home, with my entire family around me!

 I am so thankful for this day!!!

 But my heart is heavy for all of my friends who are not doing so well right now. This time of year it's extra important to keep everyone suffering with chronic illness/pain in your thoughts and prayers. During the years I was sick all the holidays served to do was remind me of how horrible my condition was, and each year the good memories of holidays past seemed further and further away. Holidays exacerbate the hopelessness, loneliness and limitations that an ill person is already dealing with daily. For me, whether it was smelling the food I couldn't eat, hearing the laughter I was not a part of, or being in a hospital away from it all... It was incredibly hard, and sometimes totally impossible to feel thankful about anything.


Except for that One thing.

This year and every year I will always be most thankful to God for being a God who...

Forgives all [my] sins and heals all [my] diseases, 
who redeems [my] life from the pit 
and crowns [me] with love and compassion, 
who satisfies [my] desires with good things 
so that [my] youth is renewed like the eagle's. 
(Ps. 103:3-5)


No matter what circumstance you presently find yourself in, Remember who He is this Thanksgiving!!

The holiday of Thanksgiving is a great reason to get together with family and eat delicious food... But "thanksgiving" also needs to be a daily practice of thanking God for what He has done in the past & trusting Him for what He will do in the future.

Happy Thanksgiving 2012 and Thank YOU to everyone who has loved and supported me and my family through our crazy journey!


Forever grateful,

Jessica


“Gratitude unlocks the fullness of life. It turns what we have into more than enough. It turns denial into acceptance, chaos into order, confusion into clarity,  problems into gifts, failures into success, the unexpected into God's perfect timing. Gratitude makes sense of our past, brings peace for today and creates hope for the future."



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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

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Wednesday, September 26, 2012

Update & Happy Sweet 16 Michelle!



Hi everyone!!

I apologize for not keeping the blog updated more frequently! Life can get so busy... Especially after coming back to life after 6 years of not being able to do anything, I sometimes find it very hard to pace myself and time just gets away from me... I want to go/see/do everything all of the time! ;)

I also recently started taking several classes online through a local university and that has been keeping me pretty occupied. I am loving it, especially my Anatomy/Physiology class :)

However, even with all of the new life excitement, there is never a dull moment around here...

I had a little incident.

The story isn't that interesting or exciting. My electric wheelchair broke and while it was being repaired I was given a loaner chair to use. Long story short, I wasn't used to the speed settings on the new chair... So when I went to go into my house I bumped both of my feet into our sliding glass doors.

Yeah... not my finest moment :(

Anyway... though I didn't hit very hard, it was hard enough to flare up RSD symptoms in my right foot, and pretty quickly.

I began having tremors, increased painful sensations and not being able to control the movement of my foot/ankle. Even though I only banged my toe, the bruises spread to the entire foot.

Within a week the foot looked like this:



That is the really weird thing about this condition...  I hit both of my feet equally hard, yet only my right foot developed the symptoms.  RSD is a really confusing, bizarre and complicated disease.


(Right foot with RSD, Left foot perfectly fine)


After talking with Dr. Cantu and sending him some pictures of the foot, we knew it would be necessary to go back to Monterrey and go inpatient for a while on a continuous ketamine infusion to stop the process and so Dr. Cantu and the ketamine could fix me once again.

Thankfully the treatment was very successful! I feel very fortunate that it works for me as well as it does.

The pain is down to a much lower level, the swelling is less, the tremors are gone, the bruises are fading and the movement is slowly coming back! I am sure with continued patience and water therapy, it will return.. And hopefully even better than before :)

Because I name everything, I now affectionately call my foot "Footnando"...after Dr. Cantu (Fernando).

I'm not sure if he really appreciates that or not :).... But I appreciate his compassion and continued efforts to help me get 100% better more than he will ever know!

In other Stevens family news, Katherine also went through a very rough flare with her Crohn's disease this past month and had several visits to the ER for symptom control. She is on new medication and seems to be on an upswing for now... Please pray that it continues!

Also this past week we celebrated Michelle's Sweet 16!! I can't even believe my little 'baby' sister is 16!! And is driving!! And is a Junior in High School!!


It's so surreal, in my mind she is still 10! Even though my life stopped during the years I was so sick, it certainly didn't stand still!

Michelle, I love you beyond what words can ever express. I couldn't have asked God for a more amazing baby sister. I can't imagine my life without you and I am so blessed and happy that I was finally able to celebrate your birthday with you! I am proud and honored to be your big sister.


Well, Thanks for checking in on me and for keeping me and my family in your prayers! It means so much.

If you could please keep our neighbor, Christian, a special little 6 year old boy,   in your prayers too. He has a rare neurologic disease, called Metachromatic Leukodystrophy (MLD) that has now taken away most of his physical abilities... but not his sweet spirit!

And also my dear Mexican RSD friend, Estefy, who is still in the hospital and really needs pain relief.

...and for everyone else suffering with horrible pain and diseases and a cure for them all... I personally know of way too many people in need of relief right now.

God bless!

Jessica



PS-I am always saying I wish I could find a way to personally thank everyone who helped make my new life possible, and I think I may have found a way...Stay tuned!  :)


"Rejoice in all God is planning for you. Be patient in trouble, and keep on praying." -Romans 12:12 (NLT)



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Monday, August 20, 2012

Three years ago today....

Hola everyone!!

Today is a very special day for me... It was three years ago today that my life-saving journey to Monterrey Mexico began!!!

On August 20th, 2009, hooked up to more IV medications than I could count and in pain I can't even begin to describe, I got onto a private air ambulance to go to Mexico and become patient #23 to undergo the ketamine coma procedure-- my very last hope for survival.

Three years ago today...


I was only 21 years old, yet I had no life, no hope and no future. I had spent the past 4 years confined to a hospital bed and fed through a feeding tube. I weighed only 81 pounds. Painful sores burned through my skin and every movement, touch, light or sound caused unbearable pain and seizures.


 Unfortunately,  August 20th 2010 was just as scary and uncertain as the year prior....

After spending over 1 year in the hospital and making significant advances in my recovery, I was once again in critical condition. A severe septic infection caused my condition to relapse. I went into respiratory arrest and nearly died, my lungs collapsed and filled with fluid and my temperature dropped to only 91 degrees! I was dying. I was rushed back down to the ICU where I underwent an emergent second ketamine coma.


Two years ago today...


What seemed like an unfair, devastating turn of events at the time, however, ended up producing a major turning point in my recovery... I woke up, miraculously improved on August 23rd! We truly serve a God of miracles!!!

  
Thankfully, last year, August 20th 2011 was a much happier occasion!!! Although I was still in Mexico recovering, I was able to go out-- to somewhere other than the hospital-- for the first time in 5 years!!! I went out for dinner with my amazing friend Cindel! After not being able to eat for over 3 years I wanted to order every single thing on the menu! It was the first "normal" day I had ever spent as a 20-something year old girl and a memory I will cherish forever!

 One year ago today...


I guess that brings me to today, August 20th 2012.

To celebrate this special day my awesome mom surprised me by arranging a special day at the beach, and allowed me to go swimming in the Gulf of Mexico for the first time in over 6 years!!! It took a lot of coordination and help from family and friends to make sure I got in and out safely, but it was one of the most incredible moments of my new life!!

TODAY.... 

video


I always say I can never describe in words the feeling of the intense pain that I went through for the past years..... but now I am also noticing that I have an equally hard time to put into words the joy, gratitude and pure excitement that I now feel to be able to live again!!

 It's amazing how my life now looks nothing like it did 3 years ago... 2 years ago... or even 1 year ago!!

I am so grateful to everyone who helped make my life possible! I want to hug, kiss and thank each and every one of you in person-- I promise I will find a way!

I am so blessed to be 24, alive well and thriving! The same touches, lights and sounds that used to cause excruciating pain, have now turned into wonderful memories at the beach with my family. The legs I was told I would not move again are kicking in the water. My body that was not able to eat, now weighs a lot more than 81 pounds :) I have a lot of hope for the bright future I know God has planned for me

....and I am already looking forward to seeing what August 20th 2013 will bring! :)

God bless!!

Love,
Jessica


PS--- I couldn't let this special day go by without wishing a very Happy 3 Year Anniversary to Dr. Cantu "Green Shirt" and Dr. Barrientos "Luigi"!! :)

I know my mom will never be able to forget the looks on both of your faces when we met on this day 3 years ago... Yet still, perhaps despite your better judgment :) you gave me a chance. You never gave up on me and when I think about the many blessings the past 3 years have brought my way-- having you two come into my life is certainly at the very top of that long list!  For years so many people prayed for my healing, and no doubt, you are both God's answer to those prayers! I love and respect you both more than my words can ever say.

 

"Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. You will increase my honor and comfort me once more." -Psalm 71 19-22 



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Friday, July 20, 2012

MEETING PRESIDENT BARACK OBAMA!!!!


I don't even know what to say....I just met, hugged, kissed, shook hands with and talked with the President of the United States!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I can’t really wrap my head around it yet… It’s so amazing, and surreal… I don’t know where to begin!

If you think about it, in the entire history of our country, only 44 men have ever been President! So, to be in the company of one of them, especially a current sitting president, is not only rare, but is really a remarkable piece of history too!

It was an incredible experience that I will hold onto for the rest of my life…

I know so many people are waiting and very excited to hear the story of the day, so here it is!

This morning, my mom and I left our house at 8am to arrive to the rally that would begin around 9:30 at the Harbourside Event Center in Fort Myers Florida.

Here we are, all ready to go!


I had spent the past 3 days putting together a special binder with a lot of information to give the President. In it contained letters, publications, research studies, medical abstracts, my story, before and after pictures, etc...

Me and my binder

As we approached downtown Fort Myers, we noticed many streets had already been closed off completely in anticipation of President’s arrival. I have never seen so many police cars in my life! Hundreds, if not thousands, of people were lined up just to watch President Obama’s motorcade drive through town, some of these people had stayed there all night just to be a part of this history!

I met up with Mabel, one of the Obama staffers helping coordinate the rally, and we then procceded to go through security- which was very heightened and similar to airport security. There were secret service people everywhere! It was like a scene from a movie!

Me and Mabel :)

Mom and I were brought over to a special section to sit in, while we waited to meet and take photos with the President! SO exciting!


As we were waiting, we had the privilege of meeting some really nice people. It never ceases to amaze me how everyone has their own story. This is one special boy named Johnny and he is a survivor too. He had open heart surgery at a very young age that saved his life!

Me and Johnny

So we are in this nice conference room and we were told that the plan was for President Obama to arrive and first he would come and spend time taking photos and talking with us and then after everyone had taken a photo, we would all proceed to the auditorium to listen to the President speak.


So, we are waiting for President Obama when all of a sudden we hear the national anthem start playing in the auditorium… followed by the pledge of allegiance… followed by a huge roar of clapping and cheering.

What was going on?! Had the President already arrived?? If so, why were all of us still in a private room instead of being out there to watch him speak??

Haha! We were very confused and wondering what was going on!

We were then informed that the plan for his visit had changed because of the tragic shooting in Colorado.

Due to the tragedy, President Obama had to cut his trip to Florida short. He entirely cancelled his rally in Orlando and only had a very short time to be in Fort Myers.

He decided that instead of talking about politics, he would instead deliver remarks about the shooting that killed 12 people and injured many more. I definitely think that was appropriate and his speech really touched me much more than any political speech could have…


He began by saying-

"Life is very fragile. Our time here is limited and it is precious. What matters at the end of the day is not the small, trivial things that so often consume us. Ultimately, it’s how we choose to treat one another and how we love one another…. That’s why we’re here.”

He ended his speech saying-

“I hope that after the events of today, you spend a little more time thinking about the incredible blessings that God has given us. We should be grateful that we are here. There are other days for politics. Today is a day for reflection. Be thankful and may God bless you." - President Obama

My thoughts and prayers go out to all of the victim’s families and I pray that God’s strength will comfort and sustain them in the hard days to come.

So now the speech was over… the crowd was still applauding and chanting “Four more years… Four more years!”… but those of us in the private room had still not “seen” President Obama!!

 I was starting to think that maybe I was not going to get to talk to him at all due to his limited time, but I definitely understood given the circumstances.

Two minutes later the secret service came into the room and asked us to back away from the door… 30 seconds later, in walks President Obama!!!

Standing right in front of me, only 5 feet away!!

He is a remarkable man—a little bit taller and thinner in person than he appears on TV. He is so charismatic and speaks gently and kindly. He exudes this positive energy and confidence.

He began to explain the tragedy that had occurred and how he had planned to have some time to take photos, but now he would need to get back to D.C soon, he thanked everyone for their support and proceeded to make his way around the room to shake everyone’s hands.

He came over to me and told me I had an incredible story and that I was a very courageous young lady! I hugged him and kissed him, shook his hand and began to share with him my story and my mission of raising awareness of my plight in hopes of making the ketamine coma treatment that saved my life in Mexico, available here in the US.

I was able to personally hand him my binder of information, which he handed to his aide who placed it straight into his personal black briefcase that an aide had carried into the room for him!

He promised he would review the information on his trip back home to the White House and that he would research what type of help he could give and/or who he should pass the information along to. 

He told me that I looked really great and whatever treatment I received, obviously worked. He also asked me if I was going to go to medical school... :)

My mom also spoke with him and she told him that it was such an honor and privilege to be here today with him. He told her that he would try to help in any way he could. She handed him a gift—a framed picture of the mountain that we looked at for 2.5 years in Monterrey, Cerro de la silla, with the bible verse underneath it Romans 5:5 “and hope does not disappoint.” Hope has been a reoccurring theme in his campaign slogans and I hope that he will help.


I am honestly so humbled that he even took a few minutes out of his crazy day to personally talk with me and listen to my story. I think this speaks a lot to his character and it is my prayer that I will be hearing from him soon.

But for now, my little binder of information is flying back to DC on Air Force One. And that is a pretty cool thought!

I remember when I met First Lady Michelle Obama in April, she said something to us that really stuck with me about her husband. She said that he has a photogenic memory—that if he speaks to you and hears your story, he does not forget you… he simply can’t. She said it’s almost a fault of his, because he can never get the stories of people he hears off of his mind.

So please pray that the time that I spent with him will remain on his mind and that the literature I gave him will be well received and be able to bring help to so many suffering, really, really soon!

Two years ago, as I lay in a darkened hospital room, on massive doses of medications, unable to eat, or move, with a body wracked in pain and covered in sores, I never could have envisioned this day-- July 20th, 2012, a date that will be forever etched in my memory as the day I met President Barack Obama, the 44th president of the United States.

God IS great—and all of the glory belongs to Him!

In God’s love!

Jessica




“Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory. We can rejoice too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our hope….and HOPE does NOT disappoint.”

Romans 5:2-5


PS- I will share other pictures with the President as soon as they are available to me… I do not have any interior pictures of the rally because we had to hand in our phones in order to enter :(


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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!