Hi to our Family & Friends,
To view Jessica on Fox TV, Click on Link Below:
http://www.youtube.com/watch?v=PW_vstm0bS8
GOD'S PLAN
God has a plan. He has a plan for all of us. God's plan doesn't require a drum roll or a marching band. God doesn't use flashing lights that say to us: "Get Ready - Today is THE Day - Today is the Day I do something Big in your life".
That's not how God does things in our lives. God works simply by stepping into a regular day in our lives and saying what he needs to say --- doing what he needs to do!
God says to us --- "Here's what needs doing, and you're the person who's going to do it, so let's go after it!"
Pray for Jessica today. She knows that God does indeed have a plan for her. She knows the "small steps" she needs to continue to take. She knows that one day, hopefully soon, HE will open that door, reveal His plan, and allow her to move on with a better life! Yesterday she received another booster to help with the burning pain. We were able to wash her hair with water while laying in her bed, instead of using the "shampoo in a cap" type system. These "small steps" forward are necessary. Jessica is definitely a fighter. As she has said many times in the past few months - "I wish I could have a new body - one that is free of pain and sickness". The hope is to bring her home one day with that "new body"!
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". Jeremiah 29:11
In God's love, always
Sarah Gina (Jessica's Mom)*
"The mind of man plans his way, but the Lord directs his steps".
Proverbs 16:9
"I can do everything through Him who gives me strength".
Phillipians 4:13
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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!
14 comments:
Another step forward - that is wonderful! I bet that water felt good!
My husband is always reminding me that illness and injuries come quickly but healing always takes longer. As long as we are moving in a forward direction that is good!
May God continue to give you both strength to get through each new day!
With love & prayers,
The Turners
just remember that we r the lucky ones to no that its lyme and not misdiagnosed anymore..
i always read ur blog and u make me want 2 fight harder
i live in long island 2. when we get better lets meet and celebrate!!!
until then...FIGHY
Hey Jessica,
You do hit days that it's like you just can't do it one minute longer. Not any of it. It's hard enough every day, day and and day out, but I know there are periods of time that I went through that I was sure I wouldn't, couldn't, make it one more day. On those days I just had to break it up. It was probably one of the most helpful things that I did. On days you feel like you can't go one more second, break it up into manageable pieces. I know when I started looking at difficult days as having to get through the entire day, the entire week, I couldn't do it. So, we broke it up. Sometimes into hours, sometimes into minutes. Mom would tell me at 8 AM in the morning, "Okay, we just have to make it to lunch time. Just lunch time." That was only several hours. We looked at it that way and we were able to pass the time more effeciently. Mom would tell me an old story, that would already take up thirty minutes. We would look at old pictures, that would pass another thirty minutes. Soon, we realized that an hour had passed. Only three more to go. Once lunch time came, we celebrated making it as such a big deal. And it was. Then we'd say, okay, I made it to lunch. The day is already half over. Now, I just have to make it to dinner time. We would do this until I got through the day. There were times, many times four hours was too much. We would break it up into smaller pieces. We would find things to try and look forward too. Sometimes it was a TV show, sometimes it was a visit, whether from Dr Cantu or a doctor that I really liked here, and she would tell me I just had to make it until then.
I know it sounds kind of dumb. It did to me too. But I Can tell you, it helped. A lot. Find things to make yourself look forward to, though I know it's hard, and when you reach your goal, really celebrate it. It should be celebrated. I think there are a lot of people that couldn't take what you are going through right now. You are doing it. And your doing a great job.
Hang in there, Jess. You can do this. You are in my prayers tonight.
In His Great love,
Lindsay
Thinking of you and lifting you up to Jesus.
Gloria
Hi Ladies,
It's been cold in Florida the last few days. At church it was so nice to see the beautiful wraps that so many of the ladies came in with. Makes me think how God is wrapping his arms around you Jessica and helping you day by day to make progress. Stay the course, you have the Master at the helm.
Love you both! And that cute Green Shirted Doctor of our Lord!
Nancy
Hi Jessica and Gina,
God does have plans for all of us...I'm trying to find which file He put my plan in. :-) This is my last week subbing in a class in a private, special education school. The teacher was out on medical leave and is not able to return. I was hoping that I would be the permanent teacher, but that is not to be. I feel that I have given so much to these special children, 3 of them with autism, and they have also given so much to me. It has been a wonderful experience, but as you have said God has plans for us.
When I read your blogs, I pause and think about my life and what God has in store for me. I embrace each day and enjoy the times with these special children. Thank you Gina for expressing your faith and Jessica's faith. I pray for you both.
Good possibility of a snowday on Wednesday. Whooeee!!!
Have a wonderful day and may God bless you both!
Madelon
Sarah and Jessica,
Thank you for posting this blog of truth about the promise of our Great God. He does have a plan- even though right now it is hard to see what that could possibly be. It has been a beautiful and yet 'painful in a way that hopefully you know what I mean king of way' to meet you both this past week. You are now in my daily prayers and in my heart.
May God shine His grace upon you and give you His peace.
Kathy Roosma- Fern's friend
kathyharv1012@hotmail.com
May God continue to bless and guide you and your doctors and family. Jim McGuffey
Dearest Jessica and Gina, You are both in my thoughts and prayers every day. As I read the blog entry about the "small steps", it seems that recognizing the steps forward, no matter what the size, is the key to seeing the healing process in action. The water in the hair washing is a step forward, as is the booster to help with the burning pain. I know that this has been a long road, with a lot of suffering that none of us could ever imagine (except for the Lord- He knows!) But, you have always done a magnificent job of being engaged in the process and hanging in there. You recognize the steps forward and glorify God in them...and you even recognize and glorify God in the steps backward. This is what I imagine true faith to be. My prayers blend with yours and so many others for Jessica for healing and Gina for strength. Hang in there! Love always, Angel
Gina,
I think we all agree that we are thankful that God has given you such a gift of knowing his word and putting it so beautifully on paper. I often think "how does she do that every day?"
Baby steps is the basis for everything but so many of us are in a rush to get to the end.
Prayers
Linda
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