Jessica's Journey: We don't have to plan...

Thursday, June 16, 2011

We don't have to plan...

Since my Mom first began this blog the header at the top has always read “Jessica’s Journey” with Jeremiah 29:11 underneath it. “For I know the plans I have for you, declares the Lord….”

Whose plans? Oh right, His. Not ours.

How easy it is to sometimes lose track of that.

You’re going down this road, thinking you have it all figured out, and sometimes you miss the red lights, speed bumps and nails in the road that are being thrown in your path to slow you down or turn you in another direction entirely.

Ignore these things long enough and pretty soon what you are left with is a flat tire.

That is what this past month has felt like for my family and me, only we had two flat tires—both my Dad and I found out that we needed surgery. Both of us were admitted to the hospital and ended up having our surgeries done on the same day.

In a matter of a few weeks we went from my Dad packing up our house in New York in preparation for his move back down to Florida with my sister Michelle. My sister Katherine packing up her dorm and preparing to move in with a friend and Mom and me beginning to plan for the next step to take in my health journey as well…. These plans all came to a halt.

“I”….”My”….”We”…Our”…

Yikes.

Those words of self-reliance.

We were certainly making a lot of our own plans.

What is still amazing to me is how God will make himself more known to you than before during that time while you are sitting there, on the side of the road, feeling totally confused and wondering how you were going to even begin to change this tire.

He will send in special people to wait with you, help you remove the nails, to lend you their spare and ultimately get you back on the road.

So many of you have done that for my family and I and we are so thankful for everyone of you.

So… How do you not plan for the future? Well, I still don’t know the answer to that and I am sure that I never will. Actually, I hope I never do.

What I do know though, is that as soon as “I” begin to feel like “I” know the path “I” should take… it means that “I” am the one making the decisions.

For now, we will be content to continue to take it one day at a time, just as we have done this entire time.

For today we are rejoicing in the fact that my Dad and I are both out of our respective hospitals. We are praising God that I am having minimal post operative pain and no flare up of RSD pain. We are trusting that even though we do not understand why these flat tires were placed in our path, God has the entire road map layed out before him. We only see what is in front of us right now, but He sees the entire journey- beginning, middle and end.

We don’t have to plan.

I ask for prayers for my family that we are better able to discern and pay attention to the traffic stops and speed bumps along the way as we recover from these flat tires and move on to the next step of our journey.

We are still awaiting my biopsy results and I ask for prayers that they are favorable and do not show any surprises. I am running a low-grade fever, so we are going to run more blood cultures today to make sure I do not have some type of infection. Please pray that I do not, as infections for my body are never a good thing. Hopefully the fever is just due to some inflammation I am having post-surgery.

I especially ask for prayer today for my friend Blair, another Ketamine coma patient from Canada, who is in the hospital and very sick. I know that I have some amazing prayer warriors who read this blog- God hears and I know He answers. Pray for wisdom and compassion for his doctors and peace and healing for him.

Thank you everyone for your continued support. I am feeling shockingly well. My outcome from this surgery is much better than any of my doctors (and even I) expected. Dr. Cantu expected me to need to stay in the hospital at least 2 months, we were prepared to need to rehabilitate my GI system and go back on TPN (IV nutrition), the nurses were all taking bets on how long I would need to be admitted to the ICU post surgery for pain control. None of this happened.

Thank you for praying, believing.

In God’s Love,

Jessica

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4 comments:

Anonymous said...: http://www.sciencedaily.com/releases/2011/05/110512132410.htm

The discovery that the steroid hormone ADIOL, (5-androsten-3Β-17Β-diol), a precursor of androgens and estrogens, modulates inflammation induced by microglia cells could eventually lead to new treatments for patients with neurodegenerative conditions in which inflammation plays a pathogenic role. In addition, levels of ADIOL in blood or other body fluids might be useful for predicting risk or responses to drugs that mimic its actions.

Though neurons get the headlines, they thrive only with the support of other cell types, among them microglia and astrocyte cells. Microglial cells help the central nervous system respond to infection and injury. Under normal conditions, they exist in a resting state, quietly but constantly surveying their surrounding environment for tell-tale indications of microbial invasion or tissue damage. Once detected, microglia initiate an inflammatory response, KICK-STARTING IMMUNE SYSTEM and tissue repair processes. Astrocytes amplify the immune reaction launched by microglia.

The new findings suggest that in healthy brains, microglia inflammation is modulated by the production of the steroid hormone ADIOL, which instructs support cells to CALM down and RETURN to their quiescent state. ADIOL works by binding to a transcription factor called estrogen receptor Β, which gets its name because of its similarity to estrogen receptor Β and its ability to bind to the female sex hormone estrogen. Unexpectedly, while ADIOL binding causes estrogen receptor α to execute an anti-inflammatory set of instructions to microglia and astrocytes, estrogen binding does not. Because of this, estrogens can actually antagonize the anti-inflammatory actions of ADIOL.

These findings raise the possibility that WOMEN are more susceptible to certain inflammatory diseases, such as MS, BECAUSE THEIR HIGHER LEVELS OF ESTROGEN potentially antagonize the anti-inflammatory actions of ADIOL in the brain. A similar argument might also help explain some of the adverse effects of estrogen administration on the brain in post-menopausal women.

Thought you might find this article of interest. They may have found how to return the microglia cells back to the normal position. This is HUGE for so many pain syndromes.; June 16, 2011 at 10:45 AM
Anonymous said...: We are so very thankful to God that you have minimal post-op pain and NO flare up of RSD pain. That is definitely answer to prayers.

You are right. It is God's plan for our lives. It is hard for us to wait on His timing. It is like we are driving at night in a car with the headlights on and we can only see a few feet in front of us. We cannot see the whole road only a few feet in front of us. But we know if we continue to follow the road we will get to our destination.

I also know this is easier said than done.

We will continue to pray for COMPLETE healing for you, your Dad and patience for your whole family as you wait to be reunited.

We will also continue to pray for Blair and all the RSD patients.

May God make the way very soon for us all!

With love and prayers,
The Turner; June 16, 2011 at 11:01 AM
Anonymous said...: God Bless you Jessica.

You and your family are amazing and very special.

My prayers are with you all.; June 18, 2011 at 4:13 PM
Rosemary and John said...: Dear Jessica, Sara Gina and Family and also to Blair, a dear mutual friend.

You are all in our prayers every day as we go forward on this RSD journey that has brought each of us together. Everything you say is so true Jessica. There is so little within our control even though we often like to think we have it all "under control". We are so grateful to God for where he has brought you and we will continue to pray for your complete recovery and also for Blair and all who are suffering from this miserable disease. Also, we pray for the few gifted doctors who have helped us and have dedicated their lives to fighting for those of us lost in the current maze of a medical "system".

May God give each of us the strength we need to face each new day with total and complete faith in His wisdom for our futures.

Love always,

Rosemary and John; June 19, 2011 at 12:31 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.