Tuesday, December 31, 2013

Happy 2014!!!


So, tonight begins another New Year, 2014... How did this happen?! 2013 seems like such a blur! I know I say this a lot, but time does seem to be moving extremely fast! It's funny in retrospect, because during the years that I was so sick, time moved soooo.incredibly.slloooowwww. It stood still. I would pray every day for time to just speed up, so I could get to the other side of this, whatever the outcome might be, faster!

Well, my prayers have certainly been answered! :)

Sitting here, thinking over the past year, I am just in complete awe of the way that God continues to restore my life. 2013 has definitely been my best year of health yet since my ordeal began 8 years ago!!! The best news of all is that I am still in complete remission from RSD! 

My hero, the amazing Dr. Cantu, continues to follow my progress closely and is also very amazed at how great I am doing! He constantly reminds me that I am his "trophy" patient and I still need to be super careful about everything I do, so I don't break his hard-earned prize. haha :) Recovery after 6 years sick in a bed is a marathon- not a sprint, so I have to move slowly to avoid a relapse. I continue with my rehab, spending nearly 2 hours each day in the pool to try and wake up the muscles and nerves in my legs and strengthen my body. I can hold myself up with my arms for nearly 1 minute on the parallel bars now and I am feeling stronger each day!



It has truly been an amazing year of continued progress in my recovery, re-discovery of life, miracles and blessings too numerous to begin to count!

The biggest highlight, for sure, has been the honor and privilege of traveling around the country to speak in churches, at gatherings & in front of crowds as large as 27,000 people to share the miracle God has done in my life!






Having teenagers come up to me, sharing their past hurts and pains, telling me that by showing my scars, they now feel like they too can heal with God's help...is an indescribable feeling. I feel so humbled that God would choose to take the worst moments of my life, and use them for His glory to help someone else get through theirs. I never thought I would want to get up on a stage and talk about my illness... But seeing what Jesus has done for me, I can't keep quiet. He is so worthy of all of the glory and praise!

Here are a few pictures from various retreats and event this past year! The most special, of course, was returning to my hometown church in Garden City, NY!







 In between frequent travels for continued medical treatment and speaking, I have also been attending college for the past 6 months, to become a Physicians Assistant!



When God placed it on my heart earlier this year to apply what I learned while sick to study medicine, I was excited, but very nervous at the same time. I had been out of school for 9 years and had been through a lot in that time. I wasn't sure how my body/nervous system would react to the stress and demands that college brings- even for students in perfect health who haven't been in a few coma's ;)


But when God call's you to do something, He provides all that you need to accomplish it! I am proud to say that I just finished my second semester last week! I have been blessed with wonderful professors and classmates who are so accommodating and helpful to me!

I am happy to say that I have gotten all A's in every class I've taken! Apparently, the ketamine did good for my brain :)

In other Stevens news, my sister Katherine is now 22, working at a blueprinting company and planning to go back to school this fall! Michelle is 17 and a senior in High School! She is driving all over and getting ready to head off to college in the fall! My favorite thing to do is spend time with these two, I love them so much!!


My Dad continues to have his up's and down's with his crohn's disease, but on all fronts, 2013 has been a very good year health-wise for him as well. And my amazing Mom, what can I even say about her? She continues to be unconditionally devoted to my full recovery, traveling this road by my side and will not rest until that goal is accomplished and I am on my feet again. She is working on finishing writing her book of our journey and hopes to have it completed and published this year!

And of course, I can't forget Molly! Molly turned 12 in September and continues to bring joy and love into our lives every day! She is the happiest little thing and you can't help but be in the best mood whenever you see her wagging her tail at you!


Something we can all agree upon is that one of the biggest blessings to come our way in 2013 was finding our church home at Living Word Family Church. God has grown each one of us spiritually in our own walks with Him through Pastor Paul and Maria's messages and the great friends we have made there! We love our church! :)

Check out some of the sermons at napleschurch.com -It is not a 'traditional' church- and that is my favorite thing about it. I promise your life will be changed too. :)

Two weeks ago, I was water baptized by Pastor Paul (here, at my house, in my 95 degree heated pool-how awesome is that?!)

Being water baptized was very significant to me, and symbolic of leaving my old life of sickness behind and trusting in and embracing the healthy life and future God has planned for me.


It was an incredibly beautiful and freeing feeling to go under the water and re-emerge, envisioning washing off the past 8 years of illness and pain! Leaving it all at the bottom of the pool and placing whatever the future holds in Jesus' hands! :)

Satan came to steal and destroy... But Jesus is the author of life, restoration and new hope and I will continue claiming my healing in His name! ...Can't think of a better way to start off the new year!

That night after I was baptized, I decided to go back and read this blog, in its entirety from beginning to finish. It know it is weird, but I have never read the early posts my mom made while I was in critical condition. I figured I lived it, so didn't need to read it..but now, I feel so blessed that I did. You can never fully appreciate where you are now, until you realize where you once were....

This is a post my mom made on New Year 2010:

"Happy New Year to All,

The first day of the new year and my first blog of 2010.

Thank you all for all of your prayers for Jessica. The past ten days post the ICU were pretty rough, as she was fighting several infections and on 3 different antibiotics. Yesterday the fevers finally broke and the heart rate problems she is having also improved, so we praise God for this new day! Dr. Luigi is trying some different medications to help her with the constant headaches, as well as her pain. We have faith in God's promises to us. Faith isn't the ability to believe long and far into the future. It's simply taking God at his Word and taking the next step. Faith is the light that guides you through the darkness. It's knowing that tomorrow will hold the blessings of God! Faith is living each day - one at a time! This is my resolution for the new year!!!

Hoping that all of your New Year's resolutions come true!

In God's love, always,
Sarah Gina (Jessica's Mom)*"


Wow. Major respect to my amazing Mom. Thank you Mommy for never allowing me to lose my faith. This year and every year I will always be most thankful to God for being a God who...

Forgives all [my] sins and heals all [my] diseases,
who redeems [my] life from the pit

and crowns [me] with love and compassion,

who satisfies [my] desires with good things

so that [my] youth is renewed like the eagle's.

(Ps. 103:3-5)

I am excited to see what God has in store for 2014! I pray that this will be a wonderful year for all of you!

Thanks for checking in & catching up! I will try to do a better job keeping this blog updated in the coming new year! I am so thankful for all of the amazing people who continue to take this journey with me, your love, support and prayers mean the world to me!

And for all of my friends still suffering with this illness, my prayer is that this year brings healing, peace and comfort for you... Don't give up the fight because as a wise doctor likes to remind me "Where there is life- there is hope." By far, the lowest point of 2013 was the loss of my fellow RSD warrior and close friend, John, after suffering for 11 years in agony, he couldn't fight any longer. I will never understand the 'why' of all of this, but I know this: God is good, He loves you, and life on earth isn't the whole story. I won't stop praying for the cure to be found soon- and I pray 2014 will be the year for it! 

Stay faithful, prayerful, hopeful and strong!



In God's amazing love,

Jessica



*To post a comment click on "comments" below*

Here is the video of my testimony in San Antonio, for anyone who missed it live! God bless!

13 comments:

Cameron VSJ said...

Hi Jessica! I was reading up on your blog just now and had a quick question. I was hoping that you could you please email me back when you have a moment, thanks!

Cameron

Anonymous said...

Dearest Jessica, Happy New Year! It was inspirational to see you here in Garden City looking so healthy and happy and GORGEOUS!!! Shining and brimming with God's love and new possibilities. All the rosary girls loved spending time and praying with you! We have been praying for you for quite a while and for many of the girls it was the first time they could put the name with a face! :) What an amazing experience! And to have you in our home, enjoying a meal with you and your Aunt Carol and your incredible mom, was a true miracle. I will always be grateful that you shared some of your short and precious time that you had in GC with us. What an amazing year 2013 was! I pray and have faith that 2014 will bring more incredible moments for you as well! Also, congratulations on doing so well in school! I am thrilled for you! You are a smart and determined young lady who has been an inspirational role model to so many of us. God bless you Jessica! Say hi to everyone for me! Love always, Angel

Rosemary said...

Dearest Jessica,

Please assure me that the words "Better late than never" are true! I am so sorry to be 2 months late in reading your New Years post. I have been self absorbed in my grief esp. over the holidays.

As I read your amazing post recounting your year of 2013 I also was astounded at the journey you've traveled from being immobilized on death's bed to traveling the world and attending college!

I witnessed a few glimpses of this miracle, both while in Mexico and recently in New York at your church. I will never forget those moments. They are branded into my memory.

Thank you for always remembering my John. He loved you so much. I will never understand why he is gone and I will likely never recover from the loss. I pray he is living pain free with our Lord and waiting for the day we will all be together again.

May God continue to bless you with full remission from RSD and may He heal your bones to be strong enough once again for you to run! I thank Him for bringing you and your family into my life. With God's blessings, I hope to see you all very soon.

Love Rosemary (& John in spirit) XO

Rita MacDonald said...

Dear Jessica, This is Rita MacDonald. I'm mom to Kathryn MacDonald (Chesterfield, Virginia 16 year old with CRPS since 2008)kathrynspages.com

You continue to be in our thoughts and prayers!

Would you please let me know who your Lyme specialist is? And have you used natural treatment for Lyme? macdonaldrz@gmail.com

Mamanurse said...

Hi.
I sent u a comment but it messed up. So in a nutshell, my son is being treated in Reno, NV at Sierra Integrative Med Center by Dr. Bruce Fong . Seen many miracles here and would talk to you if u want. We're from Memphis, TN. Been in Reno 2 1/2 yrs but Grayson has genetic mutations along with Lyme that have caused many complications. Seeing a research endocrinologist here and can't get him back home yet. Feel free to contact me.

Kay McClure
901-268-5182

Anonymous said...

Wow! You my dear are a medical miracle! I'm so glad you are well now! I have a condition called Pudendal Neuralgia which affects the pelvis. While there are many causes, there is no one cure or specific treatment that works for everyone. My version is RSD/CRPS like in that my central nervous system is basically on pain "repeat." And because of this, physical therapy, and other therapies where someone touches me only make me worse. I am having a ketamine infusion for the first time tomorrow and although I am nervous, I will keep your story, bravery, and strength in my mind. Best wishes to you. I hope you are getting better and better everyday!

nanette said...

Dear Jessica,
I found your blog recently researching Lyme & ketamine. My daughter, Petra (21) is suffering so terribly and we are trying to do all we can to save her life. She is too weak to make a Mexico trip, but just returned from a 4 day treatment using ketamine. Is there a possibility I could contact you?

Thanks,

Nanette

nanette said...

My email is nanette.fenn@gmail.com

sugei avitia said...

I would like to know about YOU.... Jessica
sugei12@hotmail.com

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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!