Jessica's Journey: It's RSD Awareness Month!

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 1^st.

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!

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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!

Jessica

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

*To Post a Comment click on Comments below*

6 comments:

Rosemary and John said...: Hi Jessica and Sarita,

Happy Halloween!

Wow, oh wow...what a blog! What a special holiday you enjoyed with each other and your close Mexican friends. We are sure it was as special for them as it was for you. We just LOVE the cupcakes and the costumes. Your Mom is a real hoot!

So many memories, so many blessings this past year. You have really come so far Jessica! Many prayers are coming your way that the new treatment for your bones will be very successful, go smoothly and without any adverse events.

May God continue to shine His blessings upon all of you, including Dr. Cantu. It is so clear to those who suffer from this disease what Dr. Cantu's "calling in life" was meant to be.

Please send our love and regards to all your health care team!

Much love and many kisses always,

Rosemary and John; November 1, 2011 at 12:43 PM
Anonymous said...: You ladies sure know how to enjoy life!

We will pray that these infusions would go very well and get you to where you need to be so you can return home with strong bones. I bet your family is so excited to see your return.

You are right in there has been much progress and learning about this illness. Many patients, who are somewhat better, are raising awareness such as Barby Ingle, http://www.powerofpain.org/, Sandra Martineau who has a RSD/CRPS research and development page on FB, https://www.facebook.com/pages/RSDCRPS-Research-and-Developements/172242468621?ref=ts, and Nancy Cotterman, Ketamine Klub for RSD/CRPS Patients https://www.facebook.com/groups/92620002470/

You are right, we still desperately need a cure and we are getting closer.

Thanks for continuing to raise awareness and being such a beacon of hope for those of us still suffering.

We pray God will make a way to eradicate this illness from the face of the earth.

With love and prayers,
The Turners; November 1, 2011 at 1:26 PM
Anonymous said...: Hey Jessica --

We were so happy to hear from you today & to see your beautiful photos! Both you and your mom look absolutely AMAZING . . . reading your blog and seeing the pictures made our day.

Please know that our thoughts and prayers are with you each and every day . . . and especially while you are getting your treatments this week. We know that you are one step closer to coming home. We are waiting patiently by the computer to hear from you! Until then . . .

With love,
The Klatts; November 1, 2011 at 6:26 PM
Anonymous said...: Jessica you look great, I love your cake, it looks amazing... Your Mum is just the best how she does everything with you. You look so happy, so pretty, just great. I always followed your blog. Praying that your infusions go well...
Please contact me daniela.c.seiler@gmail.com we might meet; November 1, 2011 at 10:31 PM
Anonymous said...: What Faith Can Do (Lyrics)

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you're stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise; November 2, 2011 at 7:14 AM
Bill Patel said...: There is this one area that you have to slide-duck in order Keep the verbiage to a minimum. Arunachal Pradesh is the ideal place for many adventure sports activities like water rafting, boating, kayaking and angling. cut them off.(25) And ye shall serve the LORD your God, and he shall bless To determine how much the cloth has got left, observe whether or not the metal is shining.; November 11, 2012 at 10:31 PM

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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.