Hi to All,
As many of you know, I have a love of the beach - its sounds, its smells, and also its abundance of shells!!! My favorite beach for shell collecting is the beach in Marco Island, Florida, where my mother, sister and brother all live with their families. In happier times, before Jessica became ill, I would walk the beach with my sister or my daughters; stopping every time we saw another magnificent shell to pick and call our own! When Jessica is better, the first thing I want to do is stroll the beach with her, and my other daughters Katherine and Michelle, and my sister Carol, who introduced me to that beach and all of its wonderful shells! I tell you this because of the following story I received from my friend Nita. It was sent to me via e-mail because she knows of my love of shells! Here is the story, entitled: "Hearing the Voice of God":
Do you remember the first time you ever put a conch shell up to your ear? Wasn't it miraculous that you could actually hear the sound of the ocean? What is also miraculous about the conch shell is that it is known for its indestructible quality and is a symbol of strength and endurance against the sea. When life seems to be tossing you about like the sea, seek solitude so that you can hear the "still small voice" of God that is described in Kings 19:12. Also, Psalm 46:10 urges us to "Be still and Know that I am God". Be still in His presence so that you may hear God's still small voice. Pretend that you are holding a conch shell and let it be your reminder to shut out the "roar" of the sea that is going on around you and be indestructible with your walk with God. Be strengthened by the One who can help you endure!!!
How appropriate this can be for all of us! Sometimes, even when you are going thru those difficult times, I guess you have to try to shut out all the negative thoughts that will come your way. At those moments, we should try to listen for that "voice" of God - the "voice" of reasoning - the "voice" of hope --- the "voice" that truly never fails us --- the "voice" of a God that loves us so!!!
Jessica asks for some special prayers that her vision is restored to normal. That the "static" vision that she has been experiencing will go away, so that she can "focus" on the days and weeks ahead of her to that road of recovery from this illness and to take the "small" steps here in Mexico that she needs to take, so that one day she and I can take those "bigger" steps on that beach together, collecting seashells once again!!!
All our love,
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!
8 comments:
Small steps in the sand together... Just for the SHELL of it!!!
Love you...
BeachBums-Nancy & Joe
Dearest Jessica and Gina, I keep you in my heart and prayers nonstop, as does my family. Gina, when I read the first part of your blog about the shells, I had a great memory of when you lived on Huntington Road. I remember your "shell bathroom" where you made the window cornice out of shells and you knew where you got every one of them! It was so beautiful and so YOU! Also, that hanging shell mobile that you made was so pretty and so creative! You have always been such a special person and friend, Gina. You have always uplifted those lucky enough to be around you with your caring, concern, creativity, positive energy, and beautiful smile and spirit. I hope you and Jessica can feel our prayers and well wishes settle around you like a soft blanket that protects you and keeps you warm and safe. I will hold in my mind that image of you and Jess walking on the beach- Love always, Angel
Hey Sarah - Seating at your sister's dining room table reading all your recent blogs. The story about Dr. Rainbow is amazing but to me, not unbelievable. My mother has appeared to my young niece on several occasions when she's been distressed with school, friends, etc. The stories the little one tells us could not have been know by anyone but my siblings.
I am going to make every attempt to attend the fundraiser in Garden City.
Lastly, I want to tell you that I find your sister looking wonderful and feeling well. We even went dancing in a local Marco bar. We have stories for you when we are all back together again. You'll laugh. There is hope Sarah. I see it here this week. God bless you and Jessica.
Love, Barbara
Jessica,
I'm so glad to hear you're moving your toes ans legs more. Keep fighting! We can't let RSD win! We continue to pray for you daily.
I'm going in for 3 consecutive days of ketamine this week, at the recommendation of the doctors. I'm learning to recognize and respect my limitations, and the importance of the ketamine boosters.
God is good and you, too will have your miracle in Monterrey!
Love and blessings,
Emily Wilford
Hi Jessica and Mrs. Stevens,
I will definitely be praying for these things. I know it is incredibly difficult to continue to look to better days when the current days are so difficult. It is hard to see the end to the storm when you are so entrenched IN the storm. I know sometimes we just felt like if only God would give us something to hold on to, something to put our hopes in, some promise for the future. One thing I felt him saying to me during these times is "Hold on to me. I am enough." While that was incredibly difficult, it did bring some comfort. While I wished I had more to hang on to, I did learn, in a way I never thought possible, God was enough. We wouldn't have gotten through those difficult days at all if he wasn't. It was only him that pulled us through those times.
You know, something funny that I have realized since my recovery and after getting through those dark times, those times when God felt so silent, so absent, were some of the defining days that God's hand was at work. Though it was impossible to see at the time, his hand was at work far more than we ever could have imagined. Some of those times when things seem to be spiraling out of control, when everything seemed to be going "wrong", were some of the defining moments in my recovery and part of the reason I am dong so well today. Isn't it amazing how God works? When he says 'my ways are not your ways' he wasn't kidding. :)
Jessica, you are in my prayers and thoughts constantly, If I can do anything to help, or you just want to talk, email me or we can always skype if that helps.
Love Always,
Lindsay Spengler
love is being sent to you this very moment.
love from Saratoga
Linda
Sarah Gina,
THank you for sharing the story. I am so amazed at how close God is to you and Jessica right now - in so many ways. I truly believe the miracles will keep on coming - even if they are very small steps every day. But me (and about a million other people) will continue to pray for the strength to make it through all of the challenges you are experiencing along the way. Lindsay's note was so beautiful and so relavent. I know in my heart that anyone who has or is experiencing what both Jessica and Lindsay have experienced, are truly touched by God. They each are putting their mark in this world and making such a difference for so many.
Love you.
Love Jessica.
Nita
Jessica my thoughts and prayers are with you.. Jacquie
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