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