Wednesday, August 5, 2015

Back in Monterrey...

Hola from Monterrey smile emotico

 I wanted to share the beautiful view from here tonight and thank everyone for the endless amount of love, support and prayers that have carried me through the most difficult battle of my life, once again.

I know so many of you continue to take this journey with me and I want to continue to share it, but right now talking, writing, or even thinking about the past months is still a bit too overwhelming and my body and brain need to recover. 

4 months ago I found myself back in a place I'd hoped to never be again, in the ICU, fighting to survive... Multiple surgeries over the past year and a major sepsis infection caused an RSD relapse to hit my body hard and I was medically in worse condition than when I first came to Monterrey back in 2009.

I will probably never know or understand why this setback happened, but I know understanding doesn't bring peace. Only Jesus does. And as the very wise Dr. Cantu always reminds me- 'just focus on today.'

So, today my heart is beating and today I am breathing. 

Today I am once again able to eat again without a feeding tube and I am in much less pain.

Today my view is of the amazing mountains instead of the inside of an ICU hospital room. Today I watched a movie with Katherine and my Mom.

Today while the road to get back to where I want to be seems long and I feel weak, I am still here with another chance to regain my life. And I have never been more certain of how possible the impossible is with a God who is bigger than any illness or setback, my incredible family, the most dedicated doctors and the many amazing people God continues to send alongside me every step of the way.

I couldn't do this alone and I've never had to, and for that I am most grateful. There will never be words to say thank you. God bless & Que Dios los bendiga

Love, Jessica

 "I will never forget this awful time, Yet I still dare to hope when I remember this: The faithful love of God never ends. His mercies never cease. His mercies are new each morning- great is his faithfulness! I say to myself, “The Lord is my inheritance; therefore, I will hope in him!”

Lamentations 3:20-23


Mia K said...

So thankful for the update. I am praying for you. May God's peace continue to cover you in the toughest of times and at the height of all your joys. Yes, "The Lord is my inheritance; therefore, I will hope in him!”

Mia Koehne

MARUS said...

we love you so much!! Eres alguien sumamente importante para nosotros, ese amor y brillo de Dios en tus ojos es impresionante!! DE LA GARZA FAMILY :)

Tobermory said...

My name is Karen. You know me not. I cannot imagine how hard it must be to provide an update when everything has slipped backwards and you can't find the path back to the beach...I'll never meet you but here I am, over in the UK thanking god very much that you've got the strength to provide this update. Strength is an odd word with many meanings - One day at a time is the strongest path.

Loraine Poulain said...

I read you whole story and I'm impressed Jessica! I'm Karen, a mexican M.D. from Monterrey and I cannot imagine all the pain you've been through, for sure, you'll always be in my prayers. Next time you come I'll be delighted to meet you! God bless you.
Twitter: @lorainePoulain

Alan said...

Praying again Jessica......

Nanette Fenn said...

Sending you big love in the name of Jesus your Healer and Deliverer, precious Jessica. May the Lord strengthen and hold you always, always. You are loved by people you don't know.

Elizabeth Hall said...
This comment has been removed by the author.
Elizabeth Hall said...

Hi Jessica...
My name is Elizabeth hall. I have had rsd for 5 yrs now. And have been praying and following you. You are a inspiration for all rsd /crps patients. I am 32 mom of 2 kids wife and was a snowboarder. I was very active my whole life from racing dirt bikes to playing soccer. God has put people and story's like yours to give me the strength and hope to beat this nasty rsd. Love to connect when you get stronger to connect with younger rsd fighter like yourself.... hang in there love. God bless you

Rosemary said...

Dear Jessica, I'll never understand why you have had to endure this long agonizing journey once again but I am so thankful for answered prayers and for Jesus giving your mom the strength to do what only she could have done. I love you so much. You are in my heart, thoughts and prayers always. Xo Rosemary

Rosemary said...
This comment has been removed by the author.
Mommy7toad said...

Dear Jessica, I wish you well.You already have strength, courage and grace You are an inspiration to many that are suffering, I admire your convictions. I have a family member here in Englewood that has suffered from CRPS/ RSD for over 12 years and she is giving up. I hope your story gives her strength, I wish you peace and love. God bless you and your family.

Massiel said...

Omg!!!!! I've been wondering how've you been. You were on my flight from MTY and your story touched me. I'm so glad to be reading your blog as I got worried. Keep smiling that beautiful smile you have and keep your eye on tomorrow.

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Monica Sanchez said...

Jessica, I have been following your story since you first went to Monterrey to get the ketamine treatment. I did not follow for the past two years, this morning I remembered you and came to this site to read about your setbacks. I am truly amazed by your faith and your strength. You are an example for all human beings and an inspiration! Keep strong and stay with your faith, there are many hearts wishing you well and asking God to guide you. Get better soon, Monica

Monica Sanchez said...

Jessica, I have been following your story since you first went to Monterrey to get the ketamine treatment. I did not follow for the past two years, this morning I remembered you and came to this site to read about your setbacks. I am truly amazed by your faith and your strength. You are an example for all human beings and an inspiration! Keep strong and stay with your faith, there are many hearts wishing you well and asking God to guide you. Get better soon, Monica

Lori Joksch said...

Wow Jessica you are a very strong faithful young lady. Thanks so much for your blog. I am also an RSD Warrior since 2009. No remission but using ketamine busters about everything two months and although has spread head to toes, I have been walking better . Have had ketamine infusions both high dose and now low dose. 23 days of ketamine infusions in last 15 mos. You are such an inspiration of faith and will. Also God Bless your mom for all she does. Hang in there! You are in my prayers! :)

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Anonymous said...

I've followed your story from the very beginning, and it's wonderful to hear how well you're doing, and that you continue to do so. I was put on ketamine last year-it took some time, though the outward signs, and systemic effects are better than ever-that works fine-take what you can get. Your story is an inspiration to the rest of us.

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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!