Hi everyone,
I sat down this morning to update everyone on Jessica and once again she came out with something so sweet and funny. As I began to type, she said to me: "Mom, take a break today from the blog, even God took a break when he created the world!" You see, even in her sickness, and with all the adversity she has had to face these past 3 1/2 years, she can still find the humor and come up with these "little" things that make me smile and give me hope that she will one day make it out of this nightmare and back to a "new normal life".
We ask today for continued prayers for Jessica's vision! She is still
being plagued by the "static" vision and cannot see beyond that. She describes it like looking at a T.V.and seeing what should be there, but she only sees the "static" or what you would see if your T.V. lost its connection. The neurologist is calling in a neuro-opthamalogist to consult on the case. He is a specialist in his field and did his training in Germany. I will keep you updated as to his findings!
Now a word to all my FRIENDS - New and Old. This was sent to me via e-mail by my friend Carol:
My Oath to You
When you are sad.....I will dry your tears
When you are scared.....I will comfort your fears
When you are worried.....I will give you hope
When you are confused.....I will help you cope
And when you are lost..and can't see the light, I shall be your beacon...shining ever so bright!
This is my oath.....I pledge to the end
Why you may ask?.....Because you are my friend!
Signed:.....GOD
This goes out to all my "girlfriends" - from Angel, Angela, Adrienne, Anne, Barbara, Bonnie, Carol, Carole, Cathy, Chris, Cecilia, Dacia, Diane, Dorothy, Diedre, Debbie, Devon, Elena, Emily, Guadalupe, Jessica, Jane, Jackie, Jennifer, Joanna, Judy, Joan, Julie, Janet, Jeannie, Laura, Linda, Lynn, Lori, Lindsay, Katherine, Katie, Katrin, Michelle, Mary, Maria, Marianne, Miriam, Minnie, Monica, Nancy, Nita, Nadia, Pat, Paulette, Regina, Rosie, Sandy, Sheila, Sharon
and everyone else ( forgive me if your name isn't listed - but I am going on few hours sleep and no coffee yet - so if I forgot - sorry - it doesn't mean that I don't count you as my friend!xoxo)
All my love,
till tomorrow,
your friend,
Sarah Gina (Jessica's Mom)
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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 illThe 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 lesionsJessica'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 campFour 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 rashDuring 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. KirkpatrickUpon 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!
6 comments:
friends are angels sent from heaven.
love from Saratoga,
Linda
I was leaving my flyers on the counter tonight at the adult school and I looked over and saw the picture, it was Jessica, I have been asking about her for 3 years now. Jessica and I worked togther at Trulucks restaurant what will be 4 years ago this Christmas time. What a delightful young lady, always completely impressed by her maturity, intelligence and strength. I was orking with her and remember her excited for the upcoming senior prom and remember her not coming to work and what we thought was mono. I asked about her everytime I came in. and every season I worked there. I am so sorry for her suffering, I only know God must have an a special adventure that only he can understand. I send you, Jessica and your family a ll my prayers and blessings. Please tell Jessica that Tracy Bowen a fellow Trulucks hostess is thinking of her and truly believe as I have told her before that she was going to do and be something profound, a spirit like hers outshines this. I will be heading up a rising funds from Trulucks and will contact your Naples gal to get it to you. We will keep her close in our prayers.
God bless,
Tracy Bowen
Blessing be on Jessica's eyes as she is about to see a wonderful new vision of her exceptional future! My prayer is that she is able to see the love from Naples this Sat 6PM EST while Fred's Diner lifts her up in prayer and love and collectivly joins together to help with the fundraiser via streaming webcast on the internet LIVE! Everyone can go to www.livestream.com/eventsswfl
and be part of the event!! The webcast will be archived also!
This gentleman Tim McGarey is gifting this to us... and is a paramedic on Isle of Capri, Fl.
Thanks be to God!!!
Night Night, Sweet Dreams Jessica and Sarah Gina!
Nancy
Jessica!
This is Erica from Italy. Me and Mike have been thinking about you very much and we were so glad to finally find your mum's blog. We looked for you all over the internet!
We want to send you our love and preyers that things get easier and that you can get rid of this stupid static vision!
I hope we'll be able to talk on AIM soon!
Big but gentle hugs to you Jess.
Love
Erica
Thank you Gina for that beautiful poem, if only I could send one back to you. What I can do is send my LOVE!!!!!!
Thank you , Gina for that beautiful poem. If only I could send one back to you. I can, however, send you my LOVE!!!!! Bonnie
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