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

Goodbye 2014... Hello 2015

Happy New Year 2015 everyone! I know I have done a terrible job at keeping this blog updated this year... There's no excuse really. Honestly, at the beginning of the year the lack of updates was simply due to life being so "normal" there wasn't much to write about (thank God for normalcy!)... Toward the end of the year, however, the lack of updates was due to not really knowing what to say, or how to say it... I'll explain. Here is my year in a short-ish recap :) 

2014 started out with me turning 26, having a fun tea party with my girlfriends to celebrate and beginning my second year of college, holding a 4.0 GPA! (I don't mention that to boast, I mention it because I have been in 3 coma's and undergone experimental treatments that nobody knows the long term effects of- and my brain is still working, thank God! ;)

26!!!!

Studying hard in Medical Law & Ethics class :) 

My sister Katherine is also back in school studying to become a medical assistant! Michelle just finished her very first semester away at college and she loves it! She is thinking of majoring in psychology, which means all 3 Stevens sisters may end up in the medical field! They are both doing so great and I couldn't be more proud to be their big sister.

In June we moved and I really love our new house. It is all on one-floor and for me and my wheelchair, it is really perfect.  We are still living in Naples, about 5 minutes away from where we used to. There's really nowhere else I would want to live. It's so beautiful here!

Every sunset is prettier than the last and the next....

Around that crazy time we found out I would need to have surgery, and for many reasons  (I was mid-semester at school, we were in the middle of packing up our house to move and I was feeling really well) we decided to hold off a month or two.

In between my summer and fall semesters I knew I would have three weeks off in August, so I planned to have my surgery during that time, figuring I would go down to Mexico, have surgery, spend a week or two recovering there and then head back home where I would have another week or so to regain my strength before classes began. Perfect plan, right? ...Yeah, I thought so too!

But as often is the case in life... Things don't always go the way we planned.

This pretty much sums up life.

Two days before leaving for Mexico, my mom surprised me with something I'd been wanting to do for a very long time... Go water tubing! Living here in Florida it is rare to go to the beach and not see someone tubing behind a boat. They always look like they are having so much fun and I always would tell my mom, "One day, I want to do that!"

Michelle & I ready to go!

Well, my 'one day' came in July... And I loved it!!! My mom explained my situation to the captain of the boat and he was super careful and didn't go very fast, but still, it was an amazing feeling to be gliding above the water, so free and without limitations!

At the time, I never could have anticipated what the coming months would bring or how often I would think back to this perfect day on the beach with my mom and sisters, praying for days like this to become a reality once again. 

During the first week in August mom and I headed down to Monterrey. You know you're a frequent flyer when the airport staff all call you by name :)

My airport friends :)

I was admitted to the hospital for all of the typical 'before we cut you open' testing and all was a 'go' for surgery the next morning. I believe we all have guardian angels.. and I feel certain that I have been blessed to meet a few of mine here on earth- my amazing doctors. Words can't ever express the love and gratitude I have for these guys for all they have done and continue to do for me!  Here's a pre-surgery "selfie" with Dr. Cantu!

My hero, the super incredible Dr. Cantu and I pre-surgery

My skilled and talented surgeon Dr. Balli

I love all things medical, and enjoy having pictures taken during each of my procedures. To me, it's fascinating to see the inside of my own body, however, since most people don't share in that enthusiasm, I won't post any of the graphic ones.. but here's a selfie of Dr. Luigi during surgery!

The amazing Dr. Luigi during surgery

Thankfully, aside from taking longer than expected due to scar tissue and adhesions from previous procedures, the surgery itself went great! Flawless actually. I was back up in my room by late afternoon. The amazing team of Drs. Cantu, Barrientos and Balli had pulled me through once again. 

"Praise God, this was rather easy" I thought. Yay!

It wasn't until a few days post surgery that I began to have symptoms that indicated something wasn't right. It started when I tried to get up for the first time and felt the room flip from under me. I couldn't control my blood pressure and heart rate. Laying down my heart raced at 130 beats per minute. Sitting up, it dropped dramatically, causing dizziness, vertigo and fainting. I had intense pain-  in my abdomen, which is expected after you're cut open, but my worst pain wasn't the incision. It was the searing pain in my right leg, which has always been the worst affected by RSD for me.

I began losing a lot of strength, weight and fluids. I developed a case of intractable hiccups that lasted 3 weeks, making it impossible to eat or sleep and causing severe pain. Soon I started having difficulty keeping down any food. And the pain continued to spread and worsen.

I wish I could say these were all brand new symptoms that I had never experienced before, but unfortunately, these were all too familiar

RSD is a malfunction of the central, peripheral and autonomic nervous systems. Even for someone who has been in prolonged remission (nearly 3 years! :), anything that causes dysregulation or short-circuits any of these systems (like a surgery, infection, broken bone or other physical trauma) carries with it the chance of a relapse.

And unfortunately, that's what happened. These symptoms have less to do with the surgery itself...and everything to do with my body's response to it- which is, to attack itself. The surgery was just the 'trigger'.

Thankfully, I was in the best place possible. With access to Dr. Cantu and his team, the most brilliant minds in the world on treating this disorder. God and Dr. Cantu have a 100% track record when it comes to restoring my health. And those are pretty good odds

To make a veryyyyy long story short(ish), my anticipated two weeks down in Mexico ended up becoming over 4 months of numerous hospital stays and 3 surgeries. Every time I was doing well enough to be discharged, I ended up going back a few days later for stabilization of symptoms.

The mountains in Monterrey, always reminding me to "look up"

Whenever I go into the hospital, we print out bible verses and hang them on the walls around my room. Usually 2 or 3, sometimes more. But this time, only one verse kept coming to my mind. Psalm 46:10. "Be still and know that I am God." I printed it out and put it in my suitcase. I hung it in my hospital room and soon would realize the irony of choosing this verse, out of the thousands I could have chosen.

For months, 'being still' was the only position my body could tolerate. Even moving my head too quickly triggered my heart rhythm to go crazy and made the room spin. Obviously, God knew all of this ahead of time... I think he was trying to send me a hint.

Finally, by mid-October I was starting to get better. I could sit up for 1 hour, then 2, then 3. I began eating soft foods and feeling stronger. The pain was present, but manageable. The treatments seemed to have stopped my body from attacking itself, and now I needed time to rebuild and recover.

Encouraged, we planned to fly home during the first week in November.

No sooner did we make those plans, I ended up back in the hospital. I woke up with a fever and assumed I ate something bad or had been exposed to the flu. But my mom convinced me it was a good idea to go back to the hospital just to check things out.

Why are mom's always right? (I mean, I know my mom is exceptional, but really- How much must I owe her for continually saving my life and taking care of me?)

The best mom in the entire world and I before surgery #1

It turns out I was in the early stages of sepsis. Somehow the medi port in my chest got infected and needed to come out ASAP. This would mean 2 more surgeries- one to take out the infected port and place a central line, at least 7-10 days of IV antibiotics and than, once the infection cleared, another surgery to place a new port.

Never a dull moment. To say I was frustrated would be an understatement... But at the same time, I was grateful it happened while I was still in Monterrey and not sitting on a plane back home. I probably would have thought I contracted Ebola on the flight!

Unfortunately, infections also wreak havoc with RSD. Sometime during the days of running fevers and shaking with chills, I began developing painful RSD lesions and blisters on my right foot, and it soon mirrored onto the left. The characteristic and strangest thing about this type of pain is the burning quality. If I were not able to see, I would swear my foot was actually being lit on fire. Yet, because I can see, I know there are no flames, no smoke, just these sores that are burning from the inside out.

Looks like: 

Feels like: 

Again, the blessing is I was in the only place in the world where I can get high dose ketamine treatments not allowed in the U.S. Early treatment offers the best outcome and so Dr. Cantu began giving me high dose ketamine boosters right away. Within a week, the sores were healing. Praise God! 

"Be still and know that I am God."

Finally, my fevers broke and it was safe to implant a new port in my chest. Because I've had so many central lines, ports and other procedures, my veins are incredibly difficult to access and locate. Dr. Cantu felt to safely do this surgery, a vascular specialist should be in the room, using special equipment to examine the veins near my heart.

What they ended up finding shocked them. Most of the large, major veins leading to and from my heart had blood clots in them. Several veins were completely blocked. Others had very minimal flow. Obviously, that's not good. Your heart needs blood flow!

When I woke up and found out, I had a lot of questions... Mainly- how am I even alive with these?!?

Basically, when a blood clot forms in an arm or leg, the limb becomes swollen, red, warm and pretty painful. These symptoms cause you to seek medical attention ASAP.

 However, when clots develop in the veins in your chest, they are symptom-less... Well, until they're not. Stroke, aneurysm and heart attack are usually how these clots make themselves known. And often, by the time these clots are discovered, it is too late to do anything about them.

The timing of this port infection likely saved my life. Because we caught the clots now, I was able to begin treatment right away. As long as I stay on the medication, take it easy and follow doctor's orders, my prognosis looks very good!

"Be still and know that I am God."

That God can use an infected port to lead the doctors to discover a hidden problem that could've been fatal... Is amazing. God's provision and protection are incredible!

I will say, spending months back in bed, not feeling so great, really gives one a looooot of time to think.

Not that I don't think about the past everyday, I do. It's just that over time, I have thought about it less and less. I have had to. To move on, cope and live my new life to the fullest.

Looking back, I am just in awe all over again at how miraculously and perfectly God continues to lay out every step of this crazy journey.  Not that I would ever in a million years choose this for my life, I definitely wouldn't. But being able to see bits and pieces of how God is working all things for my good and complete healing, gives me peace and the strength to keep going forward. He's got this.

So. Yeah, 2014 wasn't what I had planned... But that's okay. It had a happy ending- Mom and I finally made it back home 2 weeks ago, just in time to celebrate Christmas with the family!

I missed them so much! Especially Molly! (Just kidding, Katherine, Michelle and Dad.... Kind of :)

The first thing I wanted when I got home was Molly back in my arms..
Thank you Dad for bringing her back to me!!.

I am still pretty weak and recovering from the events of the past 5 months, and some days are easier than others. For now, I am 'being still' and focusing on how far I have come, rather than on how far I still have to go.

I am very excited for a New Year. With Jesus, the best is always yet to come and I fully believe 2015 is going to be great! I hope that by this summer I will be strong, and water tubing again (or maybe even swimming with the Dolphins... Hint hint Mom! :)

Thank you for checking in and especially for the continued support, love and prayers! You have all carried me through this journey and I am forever and eternally grateful!

I hope that you all have a wonderful New Year full of health and happiness... but if not those things, I hope you can find joy and peace in being still and knowing that He is God. 

God bless!

Love, Jessica


Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail; They are new every morning; great is His faithfulness! Lamentations 3:21-23

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!

Happy Birthday Jesus!!

Times change and the years go by...but the promise of Christmas ALWAYS remains!

Merry Christmas from our family to yours!!!

But more importantly, Happy Birthday Jesus!

Today we celebrate the very first miracle ever-- the birth of Jesus!! The day that changed the world and our lives forever!

The beauty of the Christmas season always reminds me of all of the many blessings and beautiful things I have in my life to be thankful  for. At the top of that list are the faithful prayers, love and support that have sustained me and my family through the past 8 years of my illness. 

As I sit here right now, smelling my mom's amazing cooking, listening to Christmas music, surrounded by my family and my sweet little dog Molly running around in her little Santa outfit, I have to almost pinch myself because it is so hard to believe that this is my life. It is such a blessing to be creating new Christmas memories... as well as re-creating old ones :) God is so good! 

I apologize for not keeping this blog updated. Time seems to move very fast... And I get so busy enjoying my new healthy life that time to write seems to completely escape me! However, I know a lot of people follow my story of hope, and I still want to share all of the incredible blessings, and continued miracles with you all...so, expect a lengthy update coming in the New Year :) 

All of the glory,honor and praise for every part of my recovery belongs directly to the birthday boy, my healer, savior and redeemer, Jesus Christ! It is mind blowing to think that the Holy God who created everything chose to enter our world, as a baby, to share in our troubles, simply because He loves us and wants us to come home to Him! Incredible love, incredible God! 

I know it sounds cliche, but we must not forget the reason for the season! Jesus is the most precious and greatest gift of all!

My prayer is simply that we strive to love and adore Him like it's Christmas everyday!

"For a child is born to us, a son is given to us. And he will be called: Wonderful Counselor, Mighty God,  Everlasting Father, Prince of Peace." Isaiah 9:6

In Jesus' great power & love,

Jessica & The Stevens Family

It's RSD Awareness Month!

November is national RSD Awareness month.

RSD (Reflex Sympathetic Dystrophy) is the crippling neurologic disorder that tried, very hard, to steal my life away from me; keeping me paralyzed in a hospital bed, with seizures & in horrific burning pain, unable to move or eat for nearly 6 years.

RSD a chronic, progressive, debilitating neurological disorder that occurs in response to an inury or illness, after which the nervous system malfunctions—causing nerves to misfire and send constant pain signals back to the brain, essentially, shutting parts of the body down.

When left undiagnosed and untreated, intractable pain and other disabling symptoms occur, including extreme sensitivity to touch, lights and sounds, severe headaches, numbness, weakness, movement disorder, paralysis, ulcerative skin lesions, seizures and softening of the bones. In its later stages, RSD can lead to internal organ dysfunction and cardiac complications. Patients may become unable to digest food, maintain stable levels of blood pressure or regulate their body temperature. RSD can ultimately ravage the entire body and its organs.

On the medically accepted McGill Pain Scale, where zero equals no pain, and fifty equals the most intense pain, RSD is ranked as a 46/50-- making it the most painful disease known to medicine!

RSD is ranked higher than pain from a bone fracture (20), cancer (24), childbirth (32) and even above amputation (38)!

Imagine if every touch cut like a knife, every breeze felt like a blow torch and even a gentle hug caused you to feel as if you were being electrocuted, if every pain medication available to you was completely ineffective?

That is what RSD feels like. And it is horrific.

Well-meaning people have said over the years, "God only gives you what you can handle...He knew you were so strong!" ... That's a nice sentiment, but it's simply not true.

On all fronts, this battle has been sooo much bigger than me, far beyond what I could ever handle, way beyond my own strength....but it has never been bigger than God.

I am so thankful for the healing power of Jesus displayed through the wisdom and knowledge of Dr. Fernando Cantu & Dr. Luis Barrientos, who saved my life! I am so thankful for my family who fought by my side, and I am so grateful for the many prayers that sustained me.

Every day that I wake up without that pain and those symptoms, I still nearly cry from shock and happiness. :)

I am blessed to be in remission... but there is still NO CURE for this horrible disease. There are a lot of people still suffering, with no way out.

I also still live with uncertainties about the future... Will I ever walk again? Stay in remission? Live a long healthy life?

Those are questions bigger than me, but again, not too big for God. I believe with my entire being that the answer to my questions is 'yes', but no matter what the future holds, I will be okay, because I know I will have Jesus' strength in my weakness, 

If someone would have told me 3 years ago, as I lay in a bed like this, that one day I would be well, out of that bed, pain free, able to eat, swim, go to school and enjoy my life... I never would have believed them. 

I want that feeling of joy I feel each morning to become a reality for all RSD sufferers.

So I am making this post as a reminder to please pray for them, that they will experience healing, peace and comfort. RSD is often called the "suicide disease", because so many patients lose hope, they don't see another option. They are tired of the pain. I lost my dear friend John this past year, and it is the most devastating and helpless feeling. 

We need awareness. We need research into the causes/triggers for this disease, We need physicians to begin recognizing ketamine infusion therapy as the standard of care in treating this disease, and for insurance companies to cover the costs, but above all of that, we need a long lasting cure. That is my ultimate prayer.

Never lose hope... 

"And nothing formed against me shall stand." (Isaiah 54:17)


To learn more, watch the following. Awareness is key! Thank you.