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!

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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)


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Tuesday, October 4, 2011

Exit plan delayed...

I am sorry for the delay in this update, but these past few weeks have been so crazy! My family- both here in Mexico and back in Florida, have been getting everything ready for my homecoming.

My incredible dad and uncle Vinnie oversaw a large construction project in our home and once it was complete, my amazing aunt Carol decorated the room and bathroom for me. Everything on their side is ready!

On this end we were busy packing up the apartment (which as you can imagine after 2 years here—is a huge undertaking!), and saying our good-byes to the people who have become my second Mexican family.

Last week my mom spent 3 hours on the phone with various airlines going over my special medical circumstances. The flights were booked—for today, October 4th. Leaving Monterrey at 12pm.

We called everyone in our family and told them we would be coming home next week! Everyone was ecstatic, but my 88 year old Nanny was definitely the happiest of all! She screamed and laughed saying repeatedly, “My prayers have been answered!!!… My prayers have been answered!!!” It was so cute!

Anyway, on that same afternoon at 4pm I was scheduled to go for some final tests that needed to be done before I could leave.

I was very excited and kept telling everyone there that these were my “last Mexican medical tests”…

…Or not.

One of the tests I had is a Densitometry scan that checks your bone density. My results were not good at all. My scores show the highest fracture risk possible in both my spine and hips. It’s a miracle that I haven’t broken several bones already. We were told I will need to go back in the hospital and have some different types of treatment before it will be safe for me to travel.

Wow. Talk about a quick change of plans.

Needless to say, we were pretty bummed. We had to call back everyone in our family (not even 4 hours later!) and tell them this news—our exit plan has been delayed.

We expected everyone would be upset, like us, and they were… especially little Michelle. But once again, my Nanny’s response was the best and caught me totally off guard. “Its ok!" She said, "Honey, you have been sick for nearly 6 years… if you need to wait 6 more weeks, or however long, you just wait. My prayer HAS been answered- You are better!! Keep trusting in God, because he knows the right timing. You do not.”

Wow. I guess with age comes great wisdom.

For the past 2 years on my wall in my room I have this verse in both english and spanish-

Proverbs 3:5-6- “Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.”

To be honest, I never really paid much attention to what the next part of that verse was though, until now…

Proverbs 3:7-8-“…Don’t be impressed with your own wisdom. Instead, fear the Lord and turn away from evil. ….Then you will have healing for your body and strength for your bones.”

Trust, healing and strength... Those are promises I can count on!

Thanks again everyone, for all of your continued support. My hope and prayer is to get to be home before Thanksgiving to celebrate with my family. Thank you for keeping my family and I in your prayers!

In God’s love, Jessica


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Friday, September 16, 2011

BIG ANNOUNCEMENT!!!!!!!!


It is often said that a picture is worth 1,000 words....




"Salida", in Spanish, means exit!!

Today is Mexican Independence Day, and with the biggest smile on my face I am excited to tell everyone that I am celebrating my independence too!!

I AM FINALLY ABLE TO COME HOME!!!!!!!!!!!!!!!!!!!!!!!!!


Our hope is to be able to leave in a few weeks! Please pray for us that everything goes smoothly and all things continue to come together to make this possible!

I can't believe this day is finally here.... Nothing is impossible with God!!

See you all soon! :)

In His awesome power and love, always,
Jessica


"God guards you from every evil, he guards your very life. He guards you when you leave and when you return, he guards you now, he guards you always." (Ps. 121 7-8 MSG)

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Tuesday, September 6, 2011

On top of the world!

My sister Katherine is here in Monterrey with me!! We have been having the most amazing time together. I had not seen her since March and she was amazed with how much more progress I have made and how much more I am able to do with her now! We have been catching up, playing games, cooking and eating (a lot!) together. Just doing sister things. We're having a blast!

Yesterday our Mom surprised us and we went on a little day trip to Obispado! El Obispado is a museum of historical Mexican military artifacts (swords, guns, cannon balls, uniforms, etc) and some religious artwork as well.

We didn’t go there to see any of that though. We actually didn’t even go inside the museum at all! See, El Obispado is located high up in the hills of Monterrey and we have been told by our friends that the panoramic view of the entire city that you can see from up there was quite incredible.

Oh my gosh! They were right!!

Stunning.

Words will never do it justice.

We just sat there, smiling, speechless. Completely in awe of what we saw.

I looked around me- the Sierra Madre mountain range in front of me, the Cerro de la silla next to me, the glowing sky above me, my mom and sister, smiling behind me.

Surreal.

I tried to take a mental snapshot while praying I would never ever be able to forget this moment… of literally, being on top of the world!

I than decided to wheel closer to the ledge and look over- down at the city of Monterrey below.

My eyes found it immediately- the helicopter landing pad that signifies a hospital.

There it was. Hospital San Jose. Right beneath my feet!

I counted up to the 8th floor and found my room.

At first I got very, very excited, “Oh my god!!! Look mom!! Look!! That’s my room!! How cool is that?! Take a picture of me!!!”

I may have even started waving, rapidly while screaming (very) loudly “Hiiiiii Dr. Cantuuuu!!!!!!” …As if he could see, or hear me from the hospital or something.

Oh boy. I guess that is what 5 years of isolation, trapped sick indoors can do to a person?? Wow. How embarrassing. :)

However once I got over my initial excitement (and took a few dozen pictures) I was quickly brought right back into that room. The memories of the very long year of laying in there staring out of that very window up at this very hill… not knowing when, how, or if, I would ever get on the outside again…

I never thought I’d ever be seeing this view of the hospital. From up high, looking down. From the outside, looking in.

So many emotions became very real and overwhelming.

I felt like I couldn’t breathe.

“What’s wrong?” Katherine asked. “Are you crying because you’re happy, or sad?”

“I don’t know! I don’t think either… I’m just so thankful.”

I was feeling a lot of things in that special moment with my mom and sister yesterday, but the feeling of thankfulness was definitely felt the strongest.

Thankful for this moment, this family, this time, this place, these doctors, this experience, this life, this God… all of it.

I never could have visualized or imagined this day, my first time out with my sister Katherine in over 5 years! It was perfect and I hope we never forget this feeling of literally being “on top of the world”!

We made it through the valley to stand upon the mountain! Thank you Jesus!

"I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord, the Maker of heaven and earth!" Psalm 121


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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.

Deal!

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 look...so... 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,

Jessica


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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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!