Sunday, August 21, 2011

My 2 Years in Mexico Anniversary!

Yesterday was my 2 year anniversary of coming to Mexico!

On August 20th, 2009, I got on an air ambulance, hooked up to several IV medications, feeding tubes and in horrendous pain to come to Monterrey and undergo the experimental Ketamine Coma treatment… My very last hope for survival.

Yesterday on my 2 year Mexico ‘birthday’- I went OUT for the very first time in 5 years!!!—not to a hospital or doctors office—but for FOOD!!! With my Mom and my Mexican sister Cindel, her brother Alex, and her friends Aleyda, and Cabiria!!!

I had the most amazing time! I still can’t stop smiling! :)

I have been wanting to go out somewhere and see some of Monterrey for such a long time! Before yesterday I had only seen whatever there is to see between going from our apartment to Hospital San Jose… which isn’t much!

Yesterday morning, on my 2 year anniversary here, I really felt it was time to try and go somewhere. My mom said “Where would you want to go?” I told her I didn’t care, as long as I could go with somewhere with Cindel, who has become like a sister to me. A lot of the time, especially with young people, when things start going bad, friends distance themselves from your suffering. But not Cindel. I am blessed to have her as my sister and even more blessed to now get to share happy and fun times with her and her friends!

The next step was to call Dr. Cantu and ask him if it was ok to go out. He wanted to know “Who with? Where to? What about this? What about that?” I felt like I was playing ’20 Questions’ with him! It was kind of like talking to my father! and really, that is what he has become to me... my Mexican father :) I know he could tell this was really important to me. He agreed I could go, but than spoke with mom and gave her an extensive rundown of “the rules.” Basically I was to be treated like bubble girl. At the first sign of over-stimulation we would call it quits and need to come home.


So we got ready to go out! After Mom helped me get dressed she wouldn't stop looking at me. I asked her why. She said, "Jess... you NORMAL!?!" Gee... Thanks Mom! haha. Actually, it's the best compliment I have ever received. :)

We took this picture as a joke for Dr. Cantu-- to tell him this is how we decided to transport me, Mexican style... in the back of a pick-up truck! The bumper sticker says, "I'm Special"... perfect! (By the way...we didn't actually go this way!) haha

My immune system is still very suppressed, so germs are a huge concern. But not to fear!! Aleyda came equipped with lysol, sanitization cloths and ex-germ spray to clean everything I was going to come in contact with—she even cleaned my menu, table, and silverware!! Everyone in the restaurant was staring at us like we were crazy, but that’s ok!

We went to an Italian restaurant called L’Anfora. It’s really pretty with a wooden stove in the center where you can watch while they cook the food. It also has a cave in the basement!

This was my first time ordering off of a menu in over 5 years! I couldn’t decide what to get! I wanted everything!!

I ended up ordering Penne alla Vodka! It was sooo delicious!!! We also got a few appetizers of Calamari, Eggplant, Octopus, Mushrooms in a red pepper sauce. Yummm!

This was a really special day for my mom and I, as it was our first time out together! I just kept looking over at her, watching her smiling at me. To see looks of happiness, joy and amazement replacing the looks of concern, sadness and worry on her face to me is worth more than anything in this world. She's the most amazing person, mother and best friend that I have and I am so happy that I am better and now she is better too!

They told them it was my birthday! The waiters sang the Mexican birthday song called “Las Mananitas” to me!

The song goes like this: Estas son las mañanitas, que cantaba el Rey David/ Hoy por ser día de tu santo, te las cantamos a ti/ Despierta, mi bien, despierta, mira que ya amaneció/ Ya los pajarillos cantan, la luna ya se metió.

Translation: This is the morning song that King David sang/ Because today is your day we're singing it for you/ Wake up, my dear, wake up, look it is already dawn/ The birds are already singing and the moon has set.

It’s funny and ironic that they sang this because I kept saying to everyone yesterday that somebody should pinch me and wake me up… because to be out, having this much fun and feeling this good, it must be a dream… I must still be asleep in the coma!

After dinner I still felt like I had some energy so we went to the nearby frozen yogurt place! It’s called Yummoramma and my mom is always going there to get me yogurt—probably about 3 times a week! They have 12 different flavors and tons of different toppings you can add! I tried every single one! The lady who works there came over to me and told me it was “nice to finally meet their best customer!”

Two years ago I would have rather died than continue to live being so sick and in horrific pain, unable to move my legs, tolerate lights or sounds, eat, or even be touched or hugged.

Today, I LOVE my life! I AM awake! I feel ALIVE again!

I am eternally grateful for the renewal of life that I have received here and I am so excited about the future…a future I was told by so many doctors that I would never have!

Our God is an AWESOME God!

Thank you Mom, Cindel, Aleyda, Cabiria and Alex for making this day so special for me. I love you guys!

In God’s amazing love,


Special announcement! I have very big and exciting news to share soon! Plans are being made and as soon as I have more details I will let everyone know! It has been all of your support, love and prayers that have helped me get this far and I can't wait to share the next step of the journey with you all! So, Stay tuned!

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Tuesday, August 2, 2011

Nerves...Streams...Pools (Update)

Most mornings mom and I go for a walk (well, “roll” for me) around the parking garage that is part of our building. If we go early enough, before it is deathly hot out, you get a great breeze and awesome views of the mountain. It’s great exercise (for mom) and I take pictures of all of the cool different license plates I come across (there are so many in Mexico!)

On one of our walks a few weeks ago we had a little mishap. The short version of the story is while being pushed in my wheelchair I was accidentally pushed into a wall. The long story isn’t much more interesting, so I’ll leave it at that. I hit my left foot pretty hard. We quickly came back upstairs and got me into bed with pillows under my foot, but within 2 hours it was very swollen, throbbing, and already bruising because I am on blood thinners. Not good! ...time to call Dr. Cantu.

He answered. “Bueno!”

“Um…Hi…Dr. Cantu?... I think Jess broke her foot.”


This poor doctor. I could almost hear his eyes bulging out of his head. Yet, he never loses his cool, ever. We love that about him.

He came over later and checked it out. He said because of the osteoporosis I have and how weak my bones are from being in a bed for years, it possibly was fractured…but even if I had an Xray and it was, he wouldn’t want to cast it because immobilization is one of the worst things you can do with RSD.

He gave me some extra medication to take for the pain and swelling and said we’d keep a close eye on it.

Unfortunately over the next week it was very obvious this was not healing the right way.

The left foot was still bruised, swollen and stiff, but that was to be expected… seeing as how the left foot was actually injured. What was more concerning was what started happening to my right foot.

In just 4 days, the right had become even more swollen and discolored than the left and I was having increased pain and uncomfortable sensations (like prickling running water.) By looking at my feet, you’d never be able to guess which foot was actually banged into the wall! So weird!

RSD is truly so bizarre. It’s hard to understand and even harder to explain. But I’ll try.

The best explanation I have heard for this is to try and imagine that your nerves are streams that carry information into little pools that form your brain. When you hurt your foot, the pain signals run along the stream that will get them to the pool the fastest- to alert you and protect you. For example, if you're stepping on something hot, your brain sends the signal to retract it ASAP.

Perceiving and interpreting pain is one of the brain’s highest functions.

As far as the brain is concerned, more pain=more damage. More damage=threat to survival. Sounds good. Having this built in ‘alarm system’ is a wonderful thing… until it malfunctions, as it does in RSD.

The brain can’t tell the difference between a malfunctioning nervous system and a healthy one… it just knows the signals it is being sent and the more signals that travel along these streams, the wider and deeper they become.

Now, picture the little pool in your brain that is responsible for perceiving pain in your left foot… and then right next to it is another little pool that is responsible for your right.

When the brain is flooded by a strong acute pain signal, the small pools overflow into each other, their water gets all mixed up. The brain becomes confused and isn’t sure where the pain it is feeling is coming from! Is it the leg, or the hand?… the left, or the right?

So it might start to interpret it as both.

Merging pools activate different pain streams and flood the brain with further confusion.

The thing about this type of spread is that it is actually taking place in the part of the brain that perceives that body part, rather than the actual body part itself.

So, my left foot was acutely injured, but because my most severe and remaining RSD symptoms have always been on my right side, years of chronic pain have made those streams deep and wide. My brain sent the ‘injured foot’ signal along the path it knew would reach my ‘alert system’ the quickest.

My nervous system was responding as if I had two injured feet- pain, swelling, discoloration and all!

Dr. Cantu was not happy to see this occurring and felt at that point having a series of booster treatments would be the best thing.

The boosters went really well and the swelling in both feet is much less. The purple discoloration in the left foot is almost completely gone and the movement is back to normal. The right foot still has some swelling and odd sensations, but they are less frequent and intense. I have never had boosters after an ‘acute’ injury before now, and the quick transformation is amazing to me. This stuff works!

My mom has felt so bad about this that I felt like even writing about it on here would have been like pouring salt into the wound. I keep telling her it’s not her fault. These things are bound to happen now that I am moving around a lot more, and the beautiful thing is that I am able to move around because I am feeling SO good!!

I’d appreciate prayers that my feet continue to heal in the right direction and that any possible fracture in the left foot will heal completely, on it's own, so that it doesn’t re-trigger this cycle again.

I am thankful for a God who saves, a doctor who cares and a treatment that works for me.

...I know I am blessed.

Thanks as always for your prayers.

In God’s love,



PS- Thanks for your prayers for my friends! Kerri has left the hospital and is on her way back to Pennsylvania! Also, I heard yesterday from Juan Pablo’s mom that he was successfully transferred back onto his own ventilator and remained on it throughout the day! He must continue to maintain stable o2 levels on his own ventilator before he can go home. Today he is that much closer! Continue to keep him in your prayers!

Ephesians 3:20

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”

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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!