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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Monday, July 16, 2012

I AM MEETING THE PRESIDENT!!!!




I have really exciting news!!!

Last night I was contacted by Mabel, who works for the Obama campaign and who I met a few months ago when I met First Lady Michelle Obama.

This Friday I will be attending a rally... to meet and share my story with.... THE PRESIDENT!! Of the UNITED STATES!! Barack Obama!!

Wow, is all I can think or say right now!

I am beyond grateful for this amazing opportunity to meet with President Obama, share my story with him and to personally hand him information that will hopefully benefit so many others suffering and in desperate need of relief through the use of ketamine infusions, and even the ketamine coma, here in the United States.

I never could have imagined, while going through the past years of extreme pain and suffering, that I would one day even be well enough to leave my bed… let alone meet the President!!

It’s surreal for me to even think about. I’m truly at a loss for words! I know and believe that God saved my life so that I can now be the voice of so many who are still suffering… this isn’t just my story… it’s all of ours, yours, and theirs too.

I can’t even imagine what I will say to the president?! Please pray that God will show me the right words to say as I tell our story.

I will update as soon as I can with pictures and my thoughts!! I am SOOOOO excited!!! :)

God bless!!

Jessica :)


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Monday, July 2, 2012

Prayers for my sister Katherine :)


Hi everyone!

I apologize for not updating more frequently! It has been a bit of a crazy time in the Stevens household! 

I think it's safe to say the 'honeymoon' period that followed my homecoming has come to an end and with summer vacation being here and everyone being home, we are all trying to find and adjust to our 'new normal''. :)

As for me... I am feeling really well and have been getting into the pool and doing my water therapy as much as possible! When I first started going into the pool my energy and muscle strength was depleted in about 10-15 minutes and I would need a lot of time to recover afterwards.


Now, I am feeling a lot stronger and able to tolerate over an hour in the pool at a time!!! 

I also have been enjoying going to the beach!

I LOVE the water-- especially the feeling of being able to move in ways I am not yet able to on land! It is incredible!! I honestly still have to pinch myself when I think of where I once was, in a hospital bed for 5 years, unable to even move or be touched... and where I am now-- in the water, moving, living and enjoying life! God is so good!

....I also have the best water 'therapists'-- My sisters :) 


Speaking of my sisters...A big curveball was thrown to us last month... Katherine began feeling sick.

My normally vibrant, active sister, who takes awesome care of me, began instead laying in bed during the day, feeling fatigued and having gastrointestinal symptoms that continued to get progressively worse...  instead of better, as time went on. We know from experience, that is never a good sign!



Three weeks ago she underwent extensive testing and was diagnosed with both Crohn's disease and Ulcerative Colitis.

Anyone who personally knows our family knows that our Dad has struggled greatly with crohn's for most of his life.

The doctors say her case is very 'rare' because of the way it presented and because oddly, Katherine's disease is in a completely different part of the intestine than my Dads. Her's is in her entire large intestine and colon, my dad has it in his small intestine.

Also, the dual diagnosis of crohns/colitis they say only occurs in 5% of patients... Again, Rare.

I am not surprised...rare...That is just how us Stevens' seem to do  things... Never 'textbook' or 'normal'! :)

For now, she has started on a treatment regimen that seems to be helping a bit with some of the symptoms and she will be having an appointment with another specialist soon to get another opinion and hopefully rule out the possibility that she has another rare condition that her labwork is suspicious for. Please pray she does not, as this would be a much worse option.

Needless to say, it has been a crazy time here! My poor mom feels like she finally got me better... And now she has a new patient! A lot of people often say "Well, God only gives you what you can handle!"... I do not really believe that. I know a lot of people, my family included, who have been given exceedingly more than they can handle! What I DO believe is that God gives us the grace and tools to get through and learn how to handle whatever circumstances we are given. With Him, we can do all things! And in our family, there is no doubt that my mom is one of his most amazing "tools"! She is the glue that binds us. Please pray for strength for her and for her sanity! :)

Please keep Katherine in your prayers!  For the healing of her GI system, wisdom for her doctors as they figure out the best treatment, and also for patience. She is 21 and just wants to go back to her normal life.

The challenges may seem great... but God is greater. If I am 100% certain of anything, it is this! After all... Look how far we've come! 




Thanks for checking in! 


God bless!
Jessica

"Don't panic. I'm with you. There's no need to fear for I'm your God. I'll give you strength. I'll help you. I'll hold you steady, keep a firm grip on you." (Isaiah 41:10 MSG)


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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!