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!!


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.


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

*To Post a Comment click on Comments below*


Anonymous said...

I had to laugh as I pictured you waving at Dr. Cantu from the top of the mountain. I probably would have done the same! LOL

What an absolutely exhilerating feeling it must have been to be on top of that mountain looking at the WHOLE city. It is like being freed from a prison and enjoying complete freedom!

Not that long ago, Your view of the world was only what you could see from your hospital window and when they opened the door to your hospital room.

And now you can go in and out of buildings, drive around in cars, go outside and inside, go to the top of the mountain or down into the city, eat, cook, pay games, visit with people, laugh, hug, it is endless.

All these things most of us take for granted had been temporarily removed from you and now it has been restored. Freedom.

Reminds me of that song (Newsboys: I am free) ... I am free to dance, I am free to live for you, I am free.

Katherine must be so amazed at what God has done for your family. She must be able to see so much change. I bet she has not stopped ginning either. :)

Through Him everything was made and we have our being. It makes me realize how much we have to be thankful for every day.

Great update, Jess! We are so happy for you! There is more to come.

With love, prayers and deep gratitude to Him who can do more than what we can imagine or ask,
The Turners

Anonymous said...

Sorry, Katherine has not stopped GRINNING (not ginning).

Nita Jean said...

My sweet Jessica,
It continues to be my honor to watch your progress through your blog. It is like an ever unfolding MIRACLE!! I was so happy to read about the lunch adventure but now a mountain!! I remember seeing that mountain as I came into Monterrey to be with you and your Mom (almost two years ago now!!). I remember praying toward that mountain, knowing that God is everywhere but that He must have had a clear shot of you from the top. I am so happy that Katherine was able to get back there with you. What an incredible time you guys all had. You and your beautiful family continue to touch my heart and the hearts of so many!! Please know that you are in my thoughts and prayers every day. Thank you for showing us what loving life and God is really all about!! Hugs to all of you. Nita

Anonymous said...

INCREDIBLE! Thank you for your updates. We appreciate how you've opened your lives and shared the journey of your recovery that you and your family have taken these past two years. Your walk of faith is such a blessing. You are a blessing. We stand in awe of your progress. Keep going!

Anonymous said...

Hi Jess, Katherine, and Gina, Your post, so beautiful and moving, just goes to show that we can never never never lose our faith in God and His Powerful Might. You are living the words of Psalm 23... He is bringing you through the valley to the peaceful waters (and the majestic mountain!) and we are humbled at the miracle of what is happening. You are on the healing path! You are teaching us to appreciate the miracles present in every day, and literally showing us with your example how to never give up because of a bad day (even a VERY bad one) because the next day may be a good, even a great, one. I am so happy for you!!! Love, hugs, smiles, and happy tears, Angel xoxoxoxoxoxo

Anonymous said...




Anonymous said...

You're the epitome of God's grace. I can see His gentle Spirit in your eyes and His strength in your face. You're a living testimony of what faith is and what it can do for those who believe. Upon reading your post, I'm so thankful for the life He's giving back to you and the normalcy you are regaining. We serve an awesome God and there's no doubt that this is just the beginning of all He has in store for you! I truly believe He is honoring your faithfulness and will use you in ways that will amaze us all. Continue on, sweet girl, and allow God to shine through you in all you do. We love you!!!

Anonymous said...

Many blessings to you Jessica. By the way, I love your pictures... Keem em coming! :)

Anonymous said...

I found this poem on Brett's blog and thought of you .... http://brettcole.blogspot.com/

The Weaver

My life is but a weaving, between my God and me.
I do not choose the colors, he worketh steadily.
Oft times he weaveth sorrow, and I in foolish pride,
Forget he sees the upper, and I the underside.

Not till the looms are silent, and the shuttles cease to fly.
Will God unroll the canvas and explain the reasons why,
The dark threads are as needful in the skillful weavers hand,
As the threads of gold and silver in the pattern he has planned.

by benjamin malacia franklin

Fern said...

I can hear your gratefulness all the way over here! I am so thrilled for you! I was smiling the whole time I read your post. God has done some miraculous work in you and in your family. You are more blessed now because you have been through the hardest parts. The refining fire is never easy but it sure brings out the uniqueness in the gems! You look so good in the pictures! I look forward to the day we can spend some time together again

Rosie said...

Dear Jessica,

I have been reading your blog from the beginning and praying for you as you recover from RSD and Lyme disease. You have given me so much inspiration as you have battled with the pain and finally found someone fantastic to help you heal.

I'm 25 and have had severe generalised RSD for 10 years and have been pretty extensively "paralysed" (apart from the pain which feels like acid, fire, you name it really) with no movement in my legs and very limited in my arms.

Seeing these pictures of you really gives me hope - and I loved the idea of you yelling down to Dr Cantu to try and say Hello! I've also spent ALOT of time in hospital so I know how lying in one bed for months in one room in one hospital building (not as bad in your own home, 1000x worse in hospital) you can end up with your world shrinking! However, you're now starting to see the whole world again and I'm so joyful for that!!

Small steps, huge advances hey?

Anyway, I just wanted to say I'm praying for you and all the best.



Rosemary and John said...

Dear Jessica,

Thank you again for such an uplifting story and for the great photos! What amazing memories you are all creating.

I was struck by your comment about being on "the outside looking in".

We normally equate being an "outsider" with being left out, of being excluded, of watching others enjoy seeing or doing something while we sit passive as a spectator.

However, in your situation, it is the exact opposite. Finally, you ARE on the outside! The outside of the hospital, of the confinement, of the illness that has imprisoned you for so many years. You are an outsider, and that is a good thing. No, it is a great thing, a blessed thing!!!

Thank you Lord for your mercy and compassion. Thank you Jessica and all the Stevens family for teaching us to remain Faithful, in the darkest of hours. Our prayer for you Jess is that you are never an "insider" again!

Love, Prayers and many xoxox's,

Rosemary & John

Anonymous said...

Everything that has breath
-Parachute Band

He is our God
Let all creation bow
The sovereign King most holy one
He sacrificed His life
washed and cleansed within
Portioned by faith
We're destined to win

Everything that has breath
Praise the Lord
Everything that's in me
Praise the Lord
I can praise Him
On the highest mountain
Praise Him in the lowest valley
Everything that's in me
Praise the Lord

Anonymous said...

 The Potter Knows the Clay
by: The Perry's

I know you are going through the fire/
Its getting hard to stand the heat/
But even harder is the wondering/
Is God’s hand still on me/
Its lonely in the flames/
When you’re counting days of pain/

But the Potter knows the clay/
How much pressure it can take/
How many times around the wheel/
‘Til there’s submission to His will/
he’s planned a beautiful design/
but it’ll take some fire and time/
its gonna be okay/
‘cause the Potter knows the clay/

Friend I just came through that fire/
Not too very long ago/
And looking back I can see why/
And that my God was in control/
But on the hottest days I’d cry/
Oh Lord, isn’t it about time/

Kendall DeArkos said...

I just came across your blog today and I have been reading your journey wit this horrible disease, I am 15 years old and have had RSD since 2009 after a ATV accident, and now have it full body.
I just wanted to say I am glad you are doing better, I will pray that you continue to get better.
I just recently started a blog about my journey if you wanted to read it here is the link.

Cristina David said...

What beautiful pictures, Jessica!
I'm so happy to see you enjoying the outdoors: no glasses, no earplugs, and SMILING!
We are always thinking of you and we keep you and your family in our prayers. Please give my best to your Mom, Dad and sisters. You continue to ispire us all.

Linda Pedigo said...

Hi, Jessica. Out of all the awesome and touching parts of this post, I love the pictures of the hugging the best.

I've just gone through another period of extensive spread of my RSD and it's getting very hard for people to touch me, & I miss the hugs the most. So as usual, your site has brought me hope when I really need it.

My PM doctor and family have been deadset against the coma treatment even though I know in my heart that the low-dose outpatient treatment along with many boosters is the only reason I'm not in bed in a dark room 24/7, using a wheelchair, not just a walker (with the upgrade to a walker rather than a cane just coming after my latest setback with both feet now affected).

I have just found out that Dr. Kirkpatrick is no longer referring patients to Monterrey, as I am going to see him next week for a consultation. And yet it seems from your posts that new patients are still going through Dr. Cantu's program. I know you have a lot going on, but anything you can e-mail me about other ways to connect to his program would be so appreciated. I think the e-mail will post with my Google account, but if not, I will re-post & include it. Maybe the answer to my prayers about the high dose treatment are "No" or "Not Yet" but I don't have that feeling in my spirit, especially after my family and doctor's dramatic turnaround.

I'm always filled with gratitude when I come to your site, think and pray for you and your family, or tell others about your amazing story. Just under 2 years ago my wise PM doctor assigned me a research project as a antidote to an uncharacteristic & tenacious depression. While web searching the assigned topic, your site came up. I was so captivated by you and Sarah Gina's faith and biblical approach to each new day's challenges, my depression was lifted instantly and has never returned in that intensity.

I had no doubt that God would unlock the doors to your physical prison, as you and your Mom kept so close to Him that you were could never be kept in a spiritual prison for long. The two are very much connected in my belief system and study of scripture.

So as you start making plans for your reclaimed life, keep the idea of becoming a physician in your heart & mind. The Lord may have another path in mind for you, and even if this is His plan for your career, it would be a journey of incredible patience and reliance on His timing. However, you could be such a blessing to those who are suffering from pain. I don't think that the revelation of the complex & intricate nervous system He designed will be completed in our lifetimes, so there will be plenty for you to accomplish!

In God's agape love, and I hope, friendship...Linda P

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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!