Thursday, September 24, 2009

What is FEAR?

Hi to All,

First let me say thank you to all our family, friends, and strangers who have taken such a huge interest in Jessica's journey to better health and living pain-free. As of today, there have been 10,800 views of this blog - that is amazing! As I said in yesterday's blog, it amazes me in how, even during these unsettling times in the world, people genuinely want to help - the human spirit and its capabilities are endless! Thanks to all of you from the bottom of our hearts!!!

Jessica's symptoms post the bad interaction she had with a medication are slowly diminishing. On a scale of 10 to 1 (10 being the worse) the symptoms that have been plaguing her this past week are now a 7). She tells the doctors that whoever ultimately gets rid of these horrible symptoms the quickest - that doctor will be her "favorite"!

I thought I would talk about fear today. You see, ever since this medication problem has happened to Jessica, she now has a "fear" of any new medicine that may have to be added or tried to help relieve some of the symptoms beyond what her body can naturally expel. I don't blame her one bit, because I feel the same way although I would never let her know this! On that note, we received a comment on the blog from Crystal. She was the first flight nurse that took care of Jessica on our first air ambulance flight from N.Y. to Tampa. She has taken such an interest in Jessica and has such a tremendous "God-filled" heart! This is what she wrote only 2 days ago on the comments in the blog:

Evidence that
She wrote: FEAR is created by the Devil in hopes that we will doubt Our Heavenly Father's Plan!!!

How true that is and how appropriate was the timing! We know that God has a plan for Jessica and his plan does not include her being fearful, living in pain, or living the rest of her life in a bed! His plan is for her and for all of us to have life - and have it in abundance! So we will march forward - take the small steps as Dr. Cantu has told Jessica to take - and we will not be fearful - AMEN to that!!!

May our love for God be greater, than all our fears!
With love and no fear,
Jessica's Mom

***To post a comment, CLICK on comments below***

Interesting Post-script: I wrote this blog earlier today and was just reading the October issue of Vanity Fair that was given to me and on the last page there is a one-page interview with Ralph Lauren where they ask him some questions. The first question asked of him was:
"What is your greatest FEAR?" His answer was: Illness.
Very interesting indeed, since today's topic was about Jessica's "fear"! I then asked Jessica the same question that was asked of Ralph Lauren and her answer was: " Not getting better!"


Anonymous said...

Hi Jessica!!

My thoughts and prayers are with you and your family everyday, I know you can pull through this!! I still remember being little girls hanging out with Deanna and Stephanie on your swing set.. I hope this all passes quickly!!

All my love,
Lisa Primiani

Anonymous said...

Hi Jessica, I read the story about you in the NDN. I wanted to let you know that I have been praying for you. I would also like to give you a book entitled "The More Excellent Way," by Henry Wright. The information in this book is life changing as it reveals spiritual roots to disease. It is totally based on scripture and has brought healing to many, many people suffering with diseases including lyme disease. Honestly, this is not something I would normally do but I am feeling led by the Holy Spirit to give you this information. Would it be OK if I dropped the book off at the Indigo Lakes address on Sunday? If not I would be happy to mail it.

With prayers and blessings, Gretchen Svoboda
You can email me at

Anonymous said...

You are so right about fear... fear hijacks our rationality. We can be cautious, where we're aware of the risks and dangers, but fear hinders us from getting anything accomplished.
I wish you so much luck with this incredibly enduring journey. I pray for Jessica often and know that she and your family are strong enough to overcome this battle.
God bless!

Regina said...

Gina, you have such a beautiful way of writing that I feel you are truly inspired by God to write. I am sure that you have touched the hearts of many in ways that only Father knows in secret. Your feelings are so real as only a mom can express them and we feel right along with you. We are learning.

Jane said...

Jessica (& Gina),
I read your blog daily...always with hope...always hoping for progress. I hate these speedbumps on your road to recovery! They're slowing you down on your journey! But you endure and persevere, knowing the road, speedbumps and all, leads to your destination...improved health and living pain-free.
Cheering you on and thinking of you constantly,
Jane Garypie

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!