Jessica's Journey: Live Loved '13 is here!!

Saturday, June 29, 2013

Live Loved '13 is here!!

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

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

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

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

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

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

Jessica

7 comments:

Marquita said...: I think my daughter, Michaela may be meeting you at the gathering right now. I believe He put you there for many reasons, one being to inspire my Michaela. Cant wait to watch your testimony this evening. God bless you for the courage and strength you had to have to endure your years of trials. My heart aches while I read your journey. God is perfect and His plans are perfect and His timing is always perfect also. While we may not understand His plans nor have chosen them we push through knowing His love for us has a plan for our good and others.; July 4, 2013 at 1:25 PM
Anonymous said...: Can't wait to hear you tonight Jessica! Small steps....BIG MIRACLES. Thank you for selflessly sharing yourself and your story so that others can find hope and help!!

Bravo!
Nancy & Joe Sustersic & TEAM JESSICA; July 4, 2013 at 4:04 PM
Anonymous said...: What a privilege it is for my 16 year old daughter to be hearing your testimony right now! May God Bless your continued recovery, Jessica...; July 4, 2013 at 9:02 PM
Angie Mullinix said...: I was extremely moved by your story because I have suffered a similar fate. I have been ill for 13 years. Two years ago I began a treatment that has allowed me to return to my normal life. I would love to be able to get you in contact with the people who helped me. You can contact me through my church, King of Kings Lutheran Church, which is located here in San Antonio. The phone # is (210) 656-6508. Ask the office staff to give you the contact information for Angie Mullinix if you are interested. You can also email me at amulli70@gmail.com. God's blessings and health to you in your journey.; July 5, 2013 at 1:26 AM
oakleyses said...: ugg boots, prada outlet, ray ban sunglasses, christian louboutin, oakley sunglasses, tory burch outlet, replica watches, louboutin pas cher, tiffany and co, tiffany jewelry, ray ban sunglasses, nike air max, longchamp outlet, louis vuitton outlet, polo outlet, longchamp pas cher, jordan shoes, kate spade outlet, louis vuitton, nike air max, oakley sunglasses, louis vuitton outlet, nike roshe, gucci handbags, oakley sunglasses, louis vuitton, air max, oakley sunglasses wholesale, sac longchamp pas cher, ray ban sunglasses, longchamp outlet, cheap oakley sunglasses, longchamp outlet, christian louboutin outlet, uggs on sale, replica watches, nike free run, nike free, prada handbags, jordan pas cher, louis vuitton outlet, christian louboutin shoes, christian louboutin uk, michael kors pas cher, nike outlet, ugg boots, burberry pas cher, polo ralph lauren outlet online; April 28, 2016 at 10:03 PM
oakleyses said...: michael kors outlet online, ralph lauren uk, mulberry uk, guess pas cher, michael kors outlet, hollister pas cher, true religion outlet, true religion outlet, michael kors outlet online, nike air max, ray ban pas cher, nike air max uk, michael kors, uggs outlet, michael kors outlet, new balance, true religion jeans, coach outlet store online, nike air force, abercrombie and fitch uk, burberry outlet, lululemon canada, oakley pas cher, sac vanessa bruno, ray ban uk, coach outlet, michael kors outlet online, michael kors outlet, nike free uk, michael kors, replica handbags, michael kors outlet online, north face uk, polo lacoste, north face, converse pas cher, coach purses, timberland pas cher, nike roshe run uk, nike tn, nike blazer pas cher, true religion outlet, vans pas cher, uggs outlet, hollister uk, hogan outlet, sac hermes, burberry handbags; April 28, 2016 at 10:06 PM
oakleyses said...: pandora charms, juicy couture outlet, links of london, ugg, converse, doudoune moncler, pandora jewelry, ugg,ugg australia,ugg italia, moncler, louis vuitton, canada goose, canada goose uk, barbour uk, canada goose outlet, pandora jewelry, louis vuitton, moncler, thomas sabo, replica watches, ugg,uggs,uggs canada, louis vuitton, marc jacobs, toms shoes, canada goose, louis vuitton, montre pas cher, canada goose outlet, ugg pas cher, hollister, moncler outlet, swarovski, canada goose outlet, canada goose jackets, ugg uk, nike air max, supra shoes, moncler uk, vans, gucci, pandora uk, ray ban, hollister, karen millen uk, wedding dresses, swarovski crystal, moncler, louis vuitton, coach outlet, juicy couture outlet, barbour, lancel, canada goose; April 28, 2016 at 10:11 PM

Post a Comment

Subscribe to: Post Comments (Atom)

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.