Jessica's Journey: Meeting the First Lady!!!!!!!!!!!

Tuesday, April 24, 2012

Meeting the First Lady!!!!!!!!!!!

**Please check out the FOX4 news report that aired last night!! Reporter Patrick Nolan did a fantastic job and I am really happy with the result! I can't believe tonight I will be meeting Michelle Obama!

I have REALLY amazing news to share!!

I received an amazing phone call yesterday!! The area code on my phone read “D.C USA” and on the other end of the line was a woman named Mabel, calling to invite me as an honorary guest to a special fundraising dinner, this Friday night, at a fancy hotel here in Naples--- to meet President Obama's wife-- Mrs. Michelle Obama!!

I was so shocked and excited that I didn’t even know what to say.

We talked for a little while about RSD and my story, and Mabel said to me “I see your treatment took place in Monterrey, Mexico?” I said, “Yes. At Hospital San Jose Tec”—she proceeded to tell me that she was BORN in Monterrey—and at Hospital San Jose!!?!

Coincidence?! Definitely not!

I strongly believe God makes these types of connections for us and I am certain that He orchestrated this meeting! I am beyond grateful to have this chance to meet Michelle Obama and to have the opportunity to share with her my story, raise awareness, and hopefully help push toward my goal of insurance coverage and approval for using the ketamine treatments-- and coma-- here in the United States, so that so many who are suffering with this horrible illness can benefit too. I feel like my life was saved so that I can be the voice for many.

I will definitely update everyone and post some pictures as soon as possible!!

I am so excited!!!

*To Post a Comment click on Comments below*

9 comments:

Rosemary and John said...: Dear Jessica,

HOW will you ever top this meeting? This is beyond exciting; it is monumental!

Less than 2 years ago, I left Monterrey with John after his 2'nd coma and we took your sister Michele, who was visiting with you in Monterrey home with us.

You were in ICU at San Jose Hospital undergoing another coma and you were very, very ill. It was scary for all of us to watch you fight another war against this disease. To this day, I don't know how your Mom withstood the stress of being there alone with you for so long and how your Dad and sisters had to pray from a distance for 2.5 years that you would someday be cured and return home.

All our prayers were answered when you were finally declared well enough to finally come home; home to Naples, FL. that is! Now, you are a young lady of two countries! This past Christmas, you and your Mom came home and since then, your lives have been a whirlwind of activity, interviews, visitors and events. Who ever imagined this would all happen so soon? God's hands are upon you, healing you more each day and HIS plan is being unveiled before our eyes. This is truly AMAZING and glorious news! This may be the ONE time your blessed mother will have to leave her camera behind because the secret service may take it from her!

I know you will post an update the very moment you can. We cannot wait to hear all about it and we are so PROUD of you we are bursting!

Go forth my dear, and speak for all of those whose voices have been drowned out by the bureaucracy of our medical "system". We have so much to learn from other countries who have not only surpassed our technology but treat the patient and the family as a whole unit and who fear not how to deliver top quality medical care because malpractice is not an option and physicians make the medical decisions, not insurance companies!

All our love,

Rosemary & John; April 25, 2012 at 12:10 PM
Fern said...: We will be praying from here! May God bless you and give you the words to be heard and may you go with all our voices in unison!

You are a real testament, stay strong and rest as often as you can! Even good stress can be hard on our systems.

May you and everyone who goes with you, be the centre of attention! may you shout from the rooftops, all that God, willing hearts and hands and an experimental treatment could do for so many!

Fern & Theo; April 25, 2012 at 5:35 PM
Anonymous said...: Dear Jessica --

OH MY WORD! Meeting President Obama's wife . . . THE MRS. OBAMA? WOWEEEEEEEE -- now that's news. We so look forward to hearing how things went -- and can't wait to find out how very impressed and amazed she was with the one and only wonderful you. Enjoy every minute!

With love to you and your family . . . and warmest belated 21st Birthday Wishes to Katherine!

The Klatts; April 25, 2012 at 8:10 PM
Anonymous said...: WOW! I got goosebumps just reading your message! I truly believe there are no coincidences in life just God's Plan at Work! May God continue to Bless You and Your Family. May All that See You tonight in the interviews on TV as well as during your visit with Mrs.Michelle Obama also see Jesus. May You be the Voice for Many! May your Wishes for increased awareness of RSD and insurance coverage for the treatment of RSD in the USA come true with flying colors! With Love and Prayers, Marianne; April 26, 2012 at 11:32 AM
Jane said...: We're thrilled with all your good and exciting news! Keep it comin'!

Love, Jane & Steve; April 26, 2012 at 3:50 PM
Anonymous said...: To see your face so glowing and young and healthy again is fantastic! Praise be to our loving gracious Lord!. Watching and crying with tears of joy!

Stay strong and be powerful!
Nancy & Joe & Andy love you!; April 26, 2012 at 8:56 PM
Anonymous said...: Dearest Jessica, WOW!!!!!!!!! This is AMAZING NEWS!!!!!!!! Isn't it incredible how God answers our prayers? I am crying tears of joy looking at your photos and your beautiful glowing face and your lovely family and thinking about how very far you've come! (Happy 21st birthday Katherine!!!!!) Our God is truly an Awesome God!!! These are your words from the Easter post: "My prayer to God before going to Mexico was that if I made it through this treatment and recovered, I would use my experience to help others…." I am in awe of how completely your prayer was heard by God, who has used you as an example of what His healing powers and His compassion can bring about in our lives if we have faith!!! You have already helped so many people as a role model for grace under difficult circumstances and an example of how to hang on even in the darkest days. You have reminded us that all of our lives are in God's hands- and that His plans for us are so much bigger than we can even comprehend!!! I am always praying for you and rooting for you up here in GC!!! Say hi to everyone for me!! Love always, Angel xoxoxoxoxo p.s. can't wait to hear all the news from the exciting events coming up!! xoxo; April 26, 2012 at 10:55 PM
Sarah Kathryn Frey said...: Dear Jessica-

What exciting news! You do not know me, but my mom has been following your story for quite some time now, keeping me updated, and now I am trying to catch up, reading all of your blog posts. Your story and faith are incredible... Such a strong and courageous girl!

Long story short, I have RSD, along with other complicating issues. After waiting two and a half years, I just had my first appointment with Dr. Schwartzman earlier this week, and he believes that my best hope lies in undergoing a ketamine coma. I am sure you and your family can relate to this overwhelming prospect.

I would love to talk with someone who has been through this. If you wouldn't mind speaking with me sometime, my email address is:

sarahkathrynfrey@yahoo.com

Enjoy your special evening!
Love,
Sarah; April 27, 2012 at 2:45 PM
NEED RSD Relief said...: Jessica! I am so inspired by you, your amazing mom and family, and the doctors in Mexico! I was just turned away from experts in my area and had felt so hopeless. Sunday is National RSD Awareness Month, so I hope its ok, but I just shared your story and dinner meeting with people in the support groups I am a member. I had contacted local press about NRAM, and after seeing the tv report and your blog, I shared that with them too because it gave me such hope that Michelle Obama called you, and you met with her. I cried watching your report, it felt like I had been touched by God, Creator, Spirit...thank you, blessings to you for being an advocate. I try but I feel so bad physically, its hard advocating for oneself when so sick. Thank you, thank you, thank you!; April 27, 2012 at 4:19 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.