Jessica's Journey: Update

Thursday, February 17, 2011

Update

Hi everyone!

I am sorry for not doing a better job of keeping this blog updated. The past couple of weeks have been a little rough for me and I sometimes just don’t know what to say.

To start with, my 23^rd birthday was wonderful!!! It was definitely the Happiest Birthday that I have had and the best part was being able to eat my own birthday cake for the first time in 4 years! My mom made me a Mexican chocolate chip cake with pink and green frosting and it was so delicious! To think that last year at this time I was very sick in the hospital and still being fed through a feeding tube...Praise God!

I have certainly come a long way, even if there is still a long way to go.

Along with the great progress, there are still challenges and times when fear and uncertainty seem to take hold. The past few weeks have been one of these times as I have been having some problems that I had not been experiencing since leaving the hospital. I will be going for some tests to further check things out.

I know that all RSD patients deal with setbacks and it is never easy. It is very difficult for me to even write about anything remotely negative on here because I have come so far and I feel so blessed to be getting better.

I don’t want this blog to ever be about the uncertainty, the fear or the pain…But rather, the hope, the joy and the strength we can all find in Jesus through the challenges. Nothing is impossible for Him! He redeems. He saves. He restores and He HEALS! I am living proof of that!

I have complete confidence that with God’s grace, Dr. Cantu’s wisdom and my Mom’s love, I cannot lose! As for me and my family, we will continue to speak of God’s great and mighty work in our lives, now and forever.

As always, thank you for the love, support and prayers for me and my family and a special thanks to the Lutheran Church of the Resurrection, who once again, held a successful art auction fundraiser to help me continue my recovery.

Please pray for healing and peace for all who are suffering, for strength and comfort for all of the devoted caregivers and for wisdom and understanding for the doctors who are trying so hard to help.

In God’s love, Jessica

“God is our refuge and strength, an ever-present help in trouble. Therefore, I will not fear.”- Psalm 46:1

***To Post A Comment, CLICK on Comments Below***

22 comments:

Fern said...: I am sorry about the set backs. This is not an easy journey. I know you always praise God, and I know that he is OK with uncertainty, after all, He made us...emotions and all! :)
I find it very difficult to slide back down the hill I have just climbed. I am tired from the journey and weary from the endless struggle for each hard won step. I also know that God is beside me all the way. I can rest comfortably that I will not be left behind. For that... I think... we all are grateful to Him each and every day... in the big things but also the little.
May you feel His comfort more acutely while he carries you through this time and thank you for being willing to share what we (all over this world) can pray for.
Your sister, in Christ as well as disease; February 17, 2011 at 7:48 PM
Anonymous said...: Jessica you are such a beautiful young lady and an inspiration for us all of your joy at life! May our Dear Lord give you an extra measure of comfort and strength as he brings you through this challenge. WE thank him for the blessings and praise him for his love...in our Sweet Lord's baby Jesus name, AMEN!
Team Jessica; February 18, 2011 at 7:19 AM
Anonymous said...: Yummy, the cake sounds delicious!

I am so happy to hear that you are still making progress (two steps forward, one step back). It would be so nice if it was always steps forward, but it does not seem to work that way. But you KNOW you have made some great progress and you WILL take those steps forward again. Our faith does not disappoint.

Keep going, Jessica!

With love & prayers,
The Turners; February 18, 2011 at 10:12 AM
Anonymous said...: Isaiah 46:3-4

3 “Listen to me, O house of Jacob, all you who remain of the house of Israel, you whom I have upheld since you were conceived,
and have carried since your birth.

4 Even to your old age and gray hairs I am he, I am he who will sustain you.

I have made you and I will carry you;

I will sustain you and I WILL RESCUE YOU.; February 18, 2011 at 10:14 AM
Anonymous said...: But the Voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth; February 18, 2011 at 10:15 AM
Anonymous said...: I give you so much credit for your story for all of us to read. Your faith and determination are inspiring.

I am so sorry you are have had such a rough week. Just remember you have pulled through so much and will do it again.

Keep the faith. Please know that you have friends all over the world that are praying for you.; February 18, 2011 at 3:46 PM
Anonymous said...: I so admire you. Your faith in the Lord has allowed you to fight and You're doing great. Keep strong.; February 18, 2011 at 4:10 PM
Anonymous said...: Dear Jessica and Gina,
We just want you to know we are keeping you close to our hearts and praying for your family. Continue to trust in God. All things are possible!; February 18, 2011 at 8:36 PM
Rosemary and John said...: Dear Jessica,

We just read your blog. Thank you for having the courage to write an update even though you've had a rough road lately.

It would be nice if we always had only positive events to relay but I guess that is not reality. We relate to your feeling that sometimes you just don't know what to say. Words don't always come easy. But know this, it is o.k. to feel and express uncertainty, to be afraid or to be disappointed. It is natural for you to feel these things. It's normal to have questions and wonder "why?" You need not always have a perpetual smile on your pretty face for all of us.

We love you and will be here for you no matter what happens and you can complain and express whatever is in your heart. God loves you and knows your fears. You have nothing to hide or cover from him or any of your family and friends. You will come through these hard times. Something new will be learned, maybe questions will be answered and you will emerge even stronger than you were. Faith, Family, Friends, Devoted Doctors, Love, Hope and Time will pull you through.

Love, Rosemary & John xoxo; February 18, 2011 at 9:00 PM
Anonymous said...: "Trust in the Lord with all thine heart. Lean not unto thine own understanding. In all thy ways acknowledge Him and he will direct thy paths." Proverbs 3:5,6

May God richly bless you as you continue your journey. Continue finding strength in Christ.

Remember baby steps...Babies always walk in the end!; February 18, 2011 at 9:48 PM
Anonymous said...: Jessica, Mom and family... Your spiritual growth almost makes me speechless. I know God is with you so strongly!; February 19, 2011 at 9:00 AM
Anonymous said...: Encouraging conversion testimony

http://thegospelcoalition.org/blogs/thabitianyabwile/2011/02/19/seriously-encouraging-conversion-testimony/

Thought you might enjoy this testimony.; February 20, 2011 at 1:23 PM
Anonymous said...: You are amazing with your wonderful attitude.Keeping you in my thoughts and prayers.

Gentle hugs

Maria; February 21, 2011 at 2:41 PM
Anonymous said...: Thinking of you! Hope that today is a good day! When are the tests? Keep updating!

Love and hugs!; February 23, 2011 at 8:49 AM
Rita MacDonald said...: Hi Jessica,
I can't thank you enough for the update and the honest sharing!! The last time I wrote, you were probably too sick to read your blog. It has been such wonderful encouragement that you now are able to post entries! You, your family and your journey continues to be very close to our hearts and to have a very special place in our time with God.
My 13 year old daughter has RSD. Her condition has worsened and we continue to look for treatments to help. I understand your fear, and I also know, as you do, God's amazing help and comfort every day.
We live in VA. and originally learned of you through your cousins, the Caparellis.
I just wanted to say "hi" and tell you thank you for sharing!
May God fill you with His help and His strenghth every moment of every day!
LOVE AND GOD'S HEALING from Va RSD Mom who you have never met, but whose life you have greatly effected:)); February 25, 2011 at 11:05 PM
Anonymous said...: To Rita,

UNC School of Medicine has a Pain Management Division. They are beginning to give outpatient ketamine infusions in NC. You can contact either Dr. Wunnava or Dr. Boortz-Marx to discuss your options.

http://www.med.unc.edu/anesthesiology/our-department/clinical-divisions-sections/pain-management-division

Hope this helps!; February 26, 2011 at 10:29 AM
Anonymous said...: Dear Jessica

You are an amazing young woman who is blessed with a wonderful family.We will continue to keep you in our hearts and prayers.

Keep the faith.
love Ashley,Kevin,Paula and Ray C.; February 26, 2011 at 8:56 PM
Anonymous said...: 1 Samuel 16:13
13 So Samuel took the horn of oil and anointed him in the presence of his brothers, and from that day on the Spirit of the LORD came upon David in power. Samuel then went to Ramah.

1 Peter 1:10-15
10Concerning this salvation, the prophets, who spoke of the grace that was to come to you, searched intently and with the greatest care, 11trying to find out the time and circumstances to which the Spirit of Christ in them was pointing when he predicted the sufferings of Christ and the glories that would follow. 12It was revealed to them that they were not serving themselves but you, when they spoke of the things that have now been told you by those who have preached the gospel to you by the Holy Spirit sent from heaven. Even angels long to look into these things.

Acts 28:25-28
25They disagreed among themselves and began to leave after Paul had made this final statement: "The Holy Spirit spoke the truth to your forefathers when he said through Isaiah the prophet:
26" 'Go to this people and say,
"You will be ever hearing but never understanding; you will be ever seeing but never perceiving."
27For this people's heart has become calloused; they hardly hear with their ears, and they have closed their eyes. Otherwise they might see with their eyes, hear with their ears, understand with their hearts and turn, and I would heal them.'
28"Therefore I want you to know that God's salvation has been sent to the Gentiles, and they will listen!"

Ephesians 3:1-5
1For this reason I, Paul, the prisoner of Christ Jesus for the sake of you Gentiles—
2Surely you have heard about the administration of God's grace that was given to me for you, 3that is, the mystery made known to me by revelation, as I have already written briefly. 4In reading this, then, you will be able to understand my insight into the mystery of Christ, 5which was not made known to men in other generations as it has now been revealed by the Spirit to God's holy apostles and prophets.; February 27, 2011 at 8:37 PM
Sally said...: Hi Jessica

I run:

http://dystoniasupport.blogspot.com/

it's just possible there may be something there that will help you - or at least that can be further investigated...

I have linked to your blog. If by any chance you could link to mine that would help spread the word...

I am truly sorry to hear about your RSD....

George; February 27, 2011 at 8:58 PM
Anonymous said...: Romans 15:13

13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.; March 5, 2011 at 10:47 AM
Marianne E. Quinn said...: Thinking of you and praying for you! May God continue to Bless You! With Love and Prayers, Marianne; March 14, 2011 at 9:34 AM
Anonymous said...: Dearest Jessica and Gina, I just wanted to say hi and that I keep you in my thoughts and prayers all the time. I pray that things are going better for you. Gina, I tried to figure out how to use Skype with no luck. Peter is now doing better from his knee surgery in December. It took a long time but he is walking better and is stronger. We are so glad to finally see the sun around here. We must have had a record amount of snow this winter. Keeping you in my heart always... Love and hugs, Angel xoxoxoxoxo; March 18, 2011 at 7:51 AM

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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 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.