Jessica's Journey: I AM MEETING THE PRESIDENT!!!!

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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9 comments:

Anonymous said...: jessica,

God is using you in mighty ways! you will know exactly what to say and when to say it when you meet the president. the Holy Spirit will take over and say what needs to be said. i'll be praying for a receptive ear.

i'm so happy God continues to bless your health. while i still live with rsd pain, i try to live every day to the fullest.

thank you for continuing to update this site, and providing hope for so many.

blessings,
emily, your coma buddy; July 17, 2012 at 1:40 AM
Rosemary said...: Dearest Jess,
This is Wonderful News! You are going to amaze the President !

He should be nervous meeting You !

We pray that God will continue to Bless You and Your Entire Family. You Go Girl !!

Love You,
John & Rosemary
xo; July 17, 2012 at 3:40 AM
Lenny Rivera said...: Jessica, that is SO exciting! There have been only 44 men that have served as President. MILLIONS and MILLIONS and Millions of Citizens have lived through their terms, and a handful ever have a change to meet them... it is SO very rare to have an opportunity to meet a sitting President. It is wonderful news that you will be able to share your journey to wellness with him. I hope we get a picture or 2 on the blog! Best wishes !

Lenny Rivera
GCFD; July 17, 2012 at 8:45 AM
Anonymous said...: Bless your heart and mind to give you the words that they might hear the suffering of the people to deliver them out of this mess that man and beast might survive.

Oh and if they would start treating the people they could get this country back to work!!!
http://www.youtube.com/watch?feature=player_embedded&v=yOno_2m_8LY
http://www.youtube.com/watch?v=LRQ-NhEkLXU&feature=youtu.be; July 18, 2012 at 12:30 AM
Joanne Hartman said...: Jessica, this is such wonderful news! Michelle must have gone home after meeting you and your mom, and told him all about you. God continues to use you in remarkable ways. You are out there representing all of us with Lyme Disease but even we will never truly understand what all you and your family went through, but we are so happy you came through back to the Light - to us. Enjoy your special visit...maybe we should have a taco party at Nancy S's house so you can tell us all about it! Bye for now, Sweetie!; July 19, 2012 at 6:09 PM
Anonymous said...: Dearest Jessica, WOW!!! This is truly amazing!!!! In hindsight, during all those dark days and years of laying in bed in such terrible pain, God was holding you in His arms through it all. Before, we believed that He had something else in mind for you - but now we can see it for real!!! He had big plans for you!!! And, now you will share your incredible story with the world- starting with the First Family of the United States!! Amazing, amazing, amazing!!! But- nothing is impossible with God!!!!! Enjoy these wonderful days- you have earned them all!!! Have fun tomorrow!!!! God bless you and your family!!! Love always, Angel xoxoxoxoxo; July 19, 2012 at 8:44 PM
Barb said...: Jessica,YOu ARE AMAZING!! I know God has saved your life to be able to spread the word for all who suffer with RSD/CRPS!You truly are an ANGEL!Thank-you for all you do for RSD/CRPS as well as for all of us who have loved ones suffering so greatly!May God Bless you always. Love and Hugs,Barb; July 20, 2012 at 4:31 PM
Anonymous said...: Dear Jessica --

YOU GO GIRL!!!!!!! What you have been through and what you have been able to accomplish -- all at the same time -- is truly amazing! What an honor to have been able to share in your remarkable journey.

You are one spectacular, beautiful young lady. How we look forward to hearing how your "talk" went with the PRESIDENT OF THE UNITED STATES!! WOW WOW WOW!!

All our love,
The Klatts; July 20, 2012 at 5:46 PM
Anonymous said...: Hi Sharon here I wish you all the best .... I have had ketamine done several times & it is a miracle. But I really need help in finding a MD that does induced coma for 7 days so I can go back to work as a RN & not a bed ridden woman. If you know how I can contact anyone who can do this please I am begging for the help so I can move forward , get off the system & go back to helping others....so please email me at sharimrn@aim.com Anyone out there please listen & help me I need purpose again in life I need life again I need to be a Mom to my disabled son & RN again so I can help others .... please just need that one person to hear me Thank You Sharon; October 18, 2012 at 3:45 PM

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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.