Jessica's Journey: A Special Visit :)

Monday, July 25, 2011

A Special Visit :)

On Saturday Mom and I had a special visit from Kerri Jarvis and her wonderful family- dad Mark, mom Kathy and sister Erin.

Kerri is a fellow RSD Ketamine Coma patient and she is back in Monterrey for the removal of all 4 of her wisdom teeth and for ketamine boosters.

Even though our parents had spent a lot of time getting to know each other in the hospital, Kerri and I had only met once, briefly. On the day she was being discharged from the hospital she was wheeled into my room and we shared our common ‘battle’ stories with each other. At the time she was still very weak and couldn’t sit up for very long.

When Kerri WALKED into our apartment yesterday, I couldn’t believe how different and great she looked! Yes, she is walking again! (and she has a really cool pink cane!)

Kerri’s mom reminded me that on that day we first met last year I was celebrating having just eaten my very first french fry in years. I was so happy and the Jarvis family enhanced my excitement by rejoicing with me in that milestone.

Tonight we made and ate homemade pizzas together! We also ate lasagna! And cake!

The day was extra special because it was also Kerri’s birthday.

Mom made her an oreo cake with vanilla frosting and I decorated it. It’s all red and green sprinkles in honor of Mexico! I call it a ‘Mexican Explosion’ cake. :)

I know that spending her 23^rd birthday -in Mexico- for medical treatment- is definitely not quite what she had in mind, but I was so happy to get to be a part of it and to spend time with her—this time sharing health, happiness and funny stories instead of battle tales.

We serve a God of miracles!

Kerri’s dental surgery will be tomorrow afternoon. There is power in prayer. Please join me in praying for wisdom and guidance for Dr. Cantu and her oral surgeon, that the surgery goes smoothly, and most importantly, that she does not have an RSD flare up. Pray for strength for Kerri and her family today as they wait and prepare and for her continued and complete healing.

She has come so far and I know she is in the best place possible- in the safe and capable hands of God & Dr. Cantu.

Thanks for the prayers!

xoxo Jessica

**To post a comment click "comments" below**

12 comments:

Anonymous said...: How wonderful to hear another person is overcoming RSD. God is continuing to work miracles. You both look great and have come so far.

We will pray for Kerri and her family. May God continue to bless her and move her forward in her healing.

Our God is an awesome God!

With love and prayers,
The Turners; July 25, 2011 at 1:17 PM
Sugei Avitia said...: Hi, Jessica:
I'm very happy for you to see how great you look, I have been following your story and believe me, you encourage me a lot, I was diagnosed with RSD almost 2 years ago, and like you at the beggining not even doctors understood what I was experiencing they said it was in my mind and the pain I was discribing couldn't be possible. By desperation I started to search in the computer to find out what was hapennig with me and realized it was horrible by thinking I had what I dind't know at that time was RSD, I'm studing to get to know how RSD works in our body and everytime I open a new blog I find out more and that I works in misterious ways and it develops differently in each body. It scares me, and worries me alot thinking that I could get worse. I have 2 kids, and I'm so scare for them, they need their mother by their side to guide them and unfortunally now I'm the one that most needs the guidence. I always pray for you and everybody in need but specially for you. I know God is listening to our prayers and you'll get fully recovered and with time you'll be able to walk again. Sometimes I would feel so depress but I opened your blog and it gave me the strengh to continue to what I call life now.
I would like to share ideas and iformation with you; here is my E-mail
sugei12@hotmail.com; July 25, 2011 at 6:02 PM
Anonymous said...: "OUR THINKING vs. GOD'S PROMISES"
MAN/WOMAN: "It's impossible"
GOD: All things are possible (Luke18:27)
MAN/WOMAN: "I'm too tired"
GOD: I will give you rest (Matthew 11:28-30)

MAN/WOMAN : "Nobody really loves me"
GOD: I love you (John 2: 16 & John 13:34)

MAN/WOMAN: "I can't go on"
GOD: My Grace is sufficient (II Corinthians 12:9 & Psalm 91:15)

MAN/WOMAN: "I can't figure things out"
GOD: I will direct your steps (Proverbs 3: 5-6)

MAN/WOMAN: "I can't do it"
GOD: You can do all things (Phillipians 4:13)

MAN/WOMAN : "I'm not able"
GOD: I am able (II Corinthians 9:8)

MAN/WOMAN: "It's not worth it"
GOD: It will be worth it (Romans 8:28)

MAN/WOMAN : "I can't forgive myself"
GOD: I forgive you (I John 1:9 & Romans 8:1)

MAN/WOMAN: "I can't manage"
GOD: I will supply all your needs (Phillipians 4:19)

MAN/WOMAN: "I'm afraid"
GOD: I have not given you a spirit of fear (II Timothy 1:7)

MAN/WOMAN: "I'm always worried and frustrated"
GOD: Cast all your cares on me (I Peter 5:7)

MAN/WOMAN: "I don't have enough faith"
GOD: I've given everyone a measure of faith (Romans 12:3)

MAN/WOMAN: "I'm not smart enough"
GOD: I give you wisdom (I Corinthians 1:30)

MAN/WOMAN: "I feel all alone"
God: I will never leave you or forsake you (Hebrews 13:5); July 26, 2011 at 8:58 AM
Rosemary and John said...: Dear Jessica,

Another amazing memory for you, Kerri and your families. We are praying for you and Kerri as you both recover in beautiful Monterrey. Miracles happen there! God is so good & compassionate and we are so blessed to have crossed paths with you. Stay strong and keep smiling Jessica, we love you!

Love,

Rosemary & John; July 26, 2011 at 10:25 PM
Anonymous said...: Hi Jess, Gina, Kerri and family, Happy birthday Kerri! I love the Mexican explosion cake, it is so you Gina!! The hand of God is at work, bringing Jess and Kerri together to see how far you both have come (love the photos! xo) from how sick you were. Our God is so GOOD!!!! You know I will keep the prayers coming from here. Plus, the rosary group I am in continues to include you in our intentions. Jess, it is so awesome to see the beautiful smile on your face in the photos. It must be from eating your mom's incredible lasagna and homemade pizza!!! and from being outside and hanging with a special friend. I pray that Kerri's surgery went well and that her recovery is smooth. Please give your mom a great big hug from me!!!! Love always, Angel xoxoxoxoxoxoxoxoxo; July 26, 2011 at 11:33 PM
Anonymous said...: "Pray for this experience: 'Show Your marvelous lovingkindness(PS 17:7)'. He will do it! He will bring you up, out and through----not necessarily in the way you would like to come, but in the best way..........When you are dealing with Him who is omnipotent, faithful, and true, the things that seem utterly impossible will be those most likely to happen." Älways expect the unexpected when you are dealing with God. Look to see in God and from God what you never saw before."; July 27, 2011 at 10:21 AM
Fern said...: what a treat to see Kerri and her family! Glad you were up to visiting with everyone. How far things have come! I am sure it was a treat for the Jarvis family as well.; July 27, 2011 at 2:53 PM
Anonymous said...: http://intrepidinsights.com/wp-content/uploads/Podcasts/NeuroScene_Podcast_Robert_Schwartzman_03_01_2007.mp3

PODCAST
Dr. Schwartzman explains CRPS and treatments.; July 28, 2011 at 11:05 AM
LSinLA said...: Dear Jessica,
I had not heard of your story or your struggle until today. I'm an actor/singer/writer going through some "normal" transitions in my life, having just been fired from my job where I had actually been unhappy and unfulfilled for a long time, and determined to remain positive and look at the blessings and opportunities that have been created instead. This morning I awoke from a dream in which I was trying to tell people about an inspiring story. The tagline or title of the story was "When I think of rainbows", so I Googled the phrase and it led me directly to one of your blog pages. I consider myself so lucky to read your story and be inspired by your recovery, courage and eloquence in the face of such frightening challenges. Thank you for being you and for reminding me of the strength of faith and the power of miracles. You're now added to my prayers and I hope you are blessed with a long and happy life.
All the best,
Lee from West Hollywood
P.S. Here is a link to a video I made last year with 100 of my friends; the song we sing was also in my head this morning. I hope you enjoy it. (I'm the guy on the left with the goatee and the blue t-shirt with the silver pendant near the front). : )
http://www.youtube.com/watch?v=KnYa9R4N-8c; July 28, 2011 at 4:02 PM
Anonymous said...: Dear Jessica and Sarah,
Words cannot describe how grateful we are for the magical day you gave us this Saturday. From the festive decorations to the endless, amazing food to the treasures from Monterrey, and most of all for the visit, stories, and laughter, we thank you from the bottom of our hearts. Of course the best part of all was walking in to see Jessica's bright smile - oh how far she has come!
Love,
Kathy, Mark, Kerri and Erin; July 29, 2011 at 2:59 PM
Robert said...: What to promote and what to avoid at the interview Americans who worked hard, paid taxes, played by the rules and lost a job through no fault of their own are still valuable workers. They deserve a fair chance to be considered for any available job, no matter how long they have been unemployed. Experience Be clear; December 7, 2012 at 3:37 AM
Hamlin said...: Dear Jessica, Another amazing memory for you, Kerri and your families. We are praying for you and Kerri as you both recover in beautiful Monterrey. Miracles happen there! God is so good & compassionate and we are so blessed to have crossed paths with you. Stay strong and keep smiling Jessica, we love you! Love, Rosemary & John; March 3, 2013 at 11:48 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.