Thursday, November 24, 2011

Happy Thanksgiving to all of our family and friends!

We want to wish a blessed Thanksgiving to all!

I don’t know of anyone who has more to be Thankful for this year than our family does.

We have been overwhelmed by the amazing mountains God has moved to allow Jessica to be able to receive the treatments that have been so successful for her and to be cared for by Dr. Cantu, who is dedicated to her complete healing.

What I have come to know and believe is that we have been truly surrounded by very compassionate people. Truly compassionate people are often hard to understand. They take risks most people would never take. They give away what most people would cling to. They reach out and touch when most would hold back with folded arms. Their caring brings them up close where they feel the other persons pain and do whatever is necessary to demonstrate true concern.

Through this journey, God has been our strength—but YOU have all served as his body, his hands and his feet!

Today (and everyday) we thank Him for the truly compassionate people in our lives- our amazing family, friends, church family and community- and all of what you have done for us- I don’t know how we will ever to be able to thank each person who has helped to make Jessica’s recovery possible, but we will find a way! We know we have been so blessed!

So, this Thanksgiving, we want to personally thank you all for being those “compassionate” people and may God bless you all today with a bountiful feast and a truly blessed day!

In God’s love, always,

A most thankful Mom,


The LORD is my strength and my shield; my heart trusts in him, and he helps me.
My heart leaps for joy, and with many songs of thanksgiving, I praise him. (Psalm 28:7)

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Sunday, November 13, 2011

100,000 views of the blog!!! & Out of the hospital!

Hi everyone!

Well, I am home from the hospital! Our small glitch in getting the medication turned into a little bit of a big glitch and it took a few days to locate and get it.

Right now I’m running a fever and feeling completely worn out, fatigued and achy as side effects from the infusion, which was expected. Overall, I am doing alright and I’m sure I will be feeling better and have my energy back in a few days once the medicine is out of my system.

I was so surprised to log online today to realize that while I was in the hospital this blog has reached 100,000 views!!!!!!

That’s amazing!!! Thank you to everyone who continues to follow my recovery and keep me in your thoughts and prayers. I will never have words to express my gratitude!

As you know, Friday was Veteran’s Day in the US. What most people probably don’t know is that RSD actually started with our soldiers! The first descriptions of it were documented about 125 years ago during the Civil War (1861-65) by Dr. Silas Weir Mitchell, a young US Army physician, who treated soldiers with gunshot wounds.

He described pain that persisted long after the bullets were removed the soldiers. He noted that the pain was characteristically of a burning nature, and named it "causalgia" (Greek for burning pain) which he attributed to the aftermath of their injuries.

Dr. Weir Mitchell, a neurologist, was very perplexed by what he was observing. He carefully documented how his patients, who were formerly otherwise healthy men, lives had been forever changed by this peculiar, burning pain, that he described it in one article as,

"the most terrible of all the tortures which a nerve wound may inflict."

He finished the same article by stating:

"Of the special cause which provokes it, we know nothing.”

Over the past hundred or so years, a lot of different names have been used to describe this bizarre syndrome- causalgia, algodystrophy, postraumatic dystrophy, Sudeck's atrophy, shoulder-hand syndrome, reflex sympathetic dystrophy (RSD) and more recently, complex regional pain syndrome (CRPS).

No matter what you decide to call it, RSD/CRPS is now known as a chronic, incurable neurological disorder in which the autonomic nervous system—the system that transfers signals from the central nervous system to various organs throughout the body—malfunctions, causing nerves to misfire and send constant pain signals back to the brain.

Today, research has brought us far from when RSD was first observed during the Civil War. It’s now known that RSD is not thought to have a single cause, but rather multiple causes producing a similar syndrome.

RSD most commonly develops in response to physical trauma-- About 65% of cases of are triggered by minor trauma (soft tissue injury, sprain, twisted ankle, venipuncture, etc). The next most common triggers are the result of bone fractures and surgery.

Current research suggests that an excessive immune response, possibly due to latent infection, may be the culprit, at least in some cases. It can also be brought on by spinal cord disorders, stroke or heart attack.

However, no matter what the underlying cause, the result is the same: horrible, excruciating nerve pain.

On the medically accepted McGill Pain Scale (0=no pain -to- 50=worst pain) RSD (causalgia) is ranked as the most intense and extreme type of pain you can possibly experience… above a bone fracture, cancer pain, childbirth and even above amputation!

McGill pain scale

Tom Haederle of Johns Hopkins University has described RSD like this: "If Hell were a clinical medical condition, it might look something like reflex sympathetic dystrophy."

I think anyone who has suffered with, or watched someone suffer from RSD would have to agree.… It’s that bad.

Dr. Schwartzman, who is internationally known for his extensive work and research in RSD/CRPS over the past 30+ years has said he doesn’t think there is a worse pain problem than RSD. I think he is right.

The bottom line is diagnosis is difficult, prompt treatment is critical and more research is needed.

When I got home from the hospital this afternoon as I was laying in my bed I saw a para-glider fly right by my window!!

His parachute was orange- which is the color of RSD awareness! I think it is a sign of hope... that one day all who suffer with this pain will have the freedom to soar above the mountains created in their lives by this illness.

It definitely looks like a LOT of fun!

Again, thank you to everyone who has helped me to gain my freedom from the pain of RSD, please continue to pray for all of those who are suffering and for a cure to be found, soon. ...100,000 views of this blog-- that is a lot of people! Imagine the awareness we could all raise, together?!

In God's love,


"...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

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Thursday, November 3, 2011

At the hospital...

Hello everyone!

I just wanted to give a quick update that I am here at the hospital and everything is going well so far. Yesterday morning our wonderful friend Elizabeth accompanied us to the hospital and I was admitted and got up into my room very quickly.

The amazing Dr. Green Shirt met me in my room and introduced me to Dr. Izquierdo, who will be assisting him with my treatment this week. In typical Jessica fashion, I had to give him a nickname as I have with all of my other doctors here! In spanish “Izquierdo” means “Left”… so he is now known as “Dr. Lefty” by me. :)

Yesterday afternoon my mexican grandma, Dr. Rainbow, came to visit and I was able to go and have a nice lunch outside by the pretty water fountain with her, which was great!

There is a gorgeous chapel here and today for the first time I was able to go downstairs for the 7:30 am mass- It was my first time being at a church service in over 5 years!!! It was so special to me! Somehow hearing a sermon, songs and the Lord’s prayer being said in spanish, made it that much more emotional and even more amazing.

God has been so good and so faithful! I am really just overwhelmed by the thought of it all sometimes. The mountains that I have seen moved, literally right before my eyes… It’s amazing, really.

As I sat there reflecting on all I have been carried through, two other fellow RSD patients were heavily on my mind- Irene Turner, who is always leaving lovely messages of hope and inspiration on my blog, had surgery to amputate her finger this morning, in hopes of alleviating her horrible pain, and Blair Webber, who has been in the hospital in Canada with RSD related complications for over 1 month now. I am praying that God will guide each of them to healing, as well as all who are suffering with RSD.

Last night I had an IV Calcium infusion and right now I am just sitting in my room visiting with some friends while waiting to start my first treatment… There was a little glitch in getting the medicine, but as always, Dr. Cantu is on top of it and hopefully it will be arriving within a few hours and we can start later tonight or early tomorrow.

Please pray for the medicine to get here, for the infusion to go smoothly and for the bad side effects that are common with this type of treatment will be minimal (or better yet- none at all!)

Thanks as always!

God bless!


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Tuesday, November 1, 2011

It's RSD Awareness Month!

Hi everyone!

Happy belated Halloween :)

Before I was sick, my family used to go all out for Halloween. We were always the first house on our street to have our decorations up and my mom was notorious for her clever costume ideas she came up with for my sisters and I. I have many good memories!

So, even though it is not widely celebrated here in Mexico, Yesterday I celebrated my first Halloween in over 5 years!

We made a “Haunted” Gingerbread house…

And I carved a pumpkin!!!

My nurse who has become one of my close friends, Angeles, came over and made Halloween cupcakes with me!

It was her first time ever celebrating Halloween!

My crazy mom agreed to dress up with me and we went trick-or-treating (giving out the cupcakes) to the people we have gotten friendly with in our apartment building!

We were a doctor and a patient.

So original, I know

(Thanks to Dr. Rainbow for letting my mom borrow her doctors coat! …My costume was obviously courtesy of Hospital San Jose. :)

Later last night a few friends came over to see our costumes, take pictures and eat candy with me!!

It was a great day and my most special Halloween yet!

...Which brings me to today. November 1st.

November is RSD Awareness month, and as I continue to make great progress in my recovery and experience all of these new, happy memories in my life I continually find myself thinking about all of the people who are still suffering and fighting with the horrible pain this disorder causes every minute of every single day… Especially those I’ve come to know and love through my journey here.

Last November I posted this blog about RSD along with this video, which I think deserves to be re-posted and re-watched-

Much of what I wrote at this time last year remains the same...

RSD is still a horribly painful, complex, mysterious and very confusing disease. There are still more questions than there are answers for many RSD patients.

We still need more awareness. We still need more research on the causes, prevention and treatment options for RSD… We still desperately need a cure.

However, this year, I write with much more hope and confidence that we are getting closer.

I have seen firsthand how far the wisdom, compassion, knowledge and dedication of the right doctor can go to bring even a patient with one of the worst cases of RSD, like me, back to the level and quality of life that I am now blessed to enjoy.

My hope and my prayer is that there will continue to be more answers, for all of us, who are dealing with this illness and for continued perseverance and understanding for the doctors who I know are working so hard on our behalf to lead us back to better, less-painful lives- especially Dr. Cantu and his team here!


Tomorrow I will be going back into the hospital for treatment to strengthen my bones. This is a new treatment for me (probably one of the only medications in the world that I have never had before!) so please pray that I tolerate the infusions well with no adverse effects so that my time in the hospital will be minimal and I will be strong enough to come home!!

Thank you for continuing to check my progress and keep me in your prayers. I will update again in a day or two from the hospital and be posting more information about RSD during awareness month.

God bless!


"Now faith is being sure of what we hope for and certain of what we do not see." (Hebrews 11:1)

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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!