Nerves...Streams...Pools (Update)

Most mornings mom and I go for a walk (well, “roll” for me) around the parking garage that is part of our building. If we go early enough, before it is deathly hot out, you get a great breeze and awesome views of the mountain. It’s great exercise (for mom) and I take pictures of all of the cool different license plates I come across (there are so many in Mexico!)

On one of our walks a few weeks ago we had a little mishap. The short version of the story is while being pushed in my wheelchair I was accidentally pushed into a wall. The long story isn’t much more interesting, so I’ll leave it at that. I hit my left foot pretty hard. We quickly came back upstairs and got me into bed with pillows under my foot, but within 2 hours it was very swollen, throbbing, and already bruising because I am on blood thinners. Not good! ...time to call Dr. Cantu.

He answered. “Bueno!”

“Um…Hi…Dr. Cantu?... I think Jess broke her foot.”

Silence.

This poor doctor. I could almost hear his eyes bulging out of his head. Yet, he never loses his cool, ever. We love that about him.

He came over later and checked it out. He said because of the osteoporosis I have and how weak my bones are from being in a bed for years, it possibly was fractured…but even if I had an Xray and it was, he wouldn’t want to cast it because immobilization is one of the worst things you can do with RSD.

He gave me some extra medication to take for the pain and swelling and said we’d keep a close eye on it.

Unfortunately over the next week it was very obvious this was not healing the right way.

The left foot was still bruised, swollen and stiff, but that was to be expected… seeing as how the left foot was actually injured. What was more concerning was what started happening to my right foot.

In just 4 days, the right had become even more swollen and discolored than the left and I was having increased pain and uncomfortable sensations (like prickling running water.) By looking at my feet, you’d never be able to guess which foot was actually banged into the wall! So weird!

RSD is truly so bizarre. It’s hard to understand and even harder to explain. But I’ll try.

The best explanation I have heard for this is to try and imagine that your nerves are streams that carry information into little pools that form your brain. When you hurt your foot, the pain signals run along the stream that will get them to the pool the fastest- to alert you and protect you. For example, if you're stepping on something hot, your brain sends the signal to retract it ASAP.

Perceiving and interpreting pain is one of the brain’s highest functions.

As far as the brain is concerned, more pain=more damage. More damage=threat to survival. Sounds good. Having this built in ‘alarm system’ is a wonderful thing… until it malfunctions, as it does in RSD.

The brain can’t tell the difference between a malfunctioning nervous system and a healthy one… it just knows the signals it is being sent and the more signals that travel along these streams, the wider and deeper they become.

Now, picture the little pool in your brain that is responsible for perceiving pain in your left foot… and then right next to it is another little pool that is responsible for your right.

When the brain is flooded by a strong acute pain signal, the small pools overflow into each other, their water gets all mixed up. The brain becomes confused and isn’t sure where the pain it is feeling is coming from! Is it the leg, or the hand?… the left, or the right?

So it might start to interpret it as both.

Merging pools activate different pain streams and flood the brain with further confusion.

The thing about this type of spread is that it is actually taking place in the part of the brain that perceives that body part, rather than the actual body part itself.

So, my left foot was acutely injured, but because my most severe and remaining RSD symptoms have always been on my right side, years of chronic pain have made those streams deep and wide. My brain sent the ‘injured foot’ signal along the path it knew would reach my ‘alert system’ the quickest.

My nervous system was responding as if I had two injured feet- pain, swelling, discoloration and all!

Dr. Cantu was not happy to see this occurring and felt at that point having a series of booster treatments would be the best thing.

The boosters went really well and the swelling in both feet is much less. The purple discoloration in the left foot is almost completely gone and the movement is back to normal. The right foot still has some swelling and odd sensations, but they are less frequent and intense. I have never had boosters after an ‘acute’ injury before now, and the quick transformation is amazing to me. This stuff works!

My mom has felt so bad about this that I felt like even writing about it on here would have been like pouring salt into the wound. I keep telling her it’s not her fault. These things are bound to happen now that I am moving around a lot more, and the beautiful thing is that I am able to move around because I am feeling SO good!!

I’d appreciate prayers that my feet continue to heal in the right direction and that any possible fracture in the left foot will heal completely, on it's own, so that it doesn’t re-trigger this cycle again.

I am thankful for a God who saves, a doctor who cares and a treatment that works for me.

...I know I am blessed.

Thanks as always for your prayers.

In God’s love,

Jessica

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PS- Thanks for your prayers for my friends! Kerri has left the hospital and is on her way back to Pennsylvania! Also, I heard yesterday from Juan Pablo’s mom that he was successfully transferred back onto his own ventilator and remained on it throughout the day! He must continue to maintain stable o2 levels on his own ventilator before he can go home. Today he is that much closer! Continue to keep him in your prayers!

Ephesians 3:20

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”

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My special little friend

Last year around this time a very special little boy (and his awesome family!) came into my life.

His name is Juan Pablo and he is 2 years old.

Last June one of our Monterrey friends, Sylvia, had gone to a funeral for one of her neighbors. She was so moved by the sermon that the priest had given that she felt compelled to go up to him after the service and talk with him. She told him she was on her way to visit a friend who had been sick in the hospital for a long time (me). The priest asked her if she would like a ride, because he just so happened to be on his way there too.

She accepted his offer and when they arrived at Hospital San Jose, the priest, Father Carlos, decided to come up to the 8^th floor with her to meet mom and I and to pray with us.

It is a visit I will never, ever forget.

I was feeling very discouraged that day. My discharge plan from the hospital had fallen through… again… because I was sick with yet another infection. I was feeling miserable. Father Carlos spent time listening to me and than prayed for me. He told me that God knew what He was doing, even if I don’t ‘get it’ right now. This delay in leaving the hospital was for a purpose… he assured me, His answer is the right answer and His timing would be the right timing.

I definitely needed to hear that message and I know God used him to speak it to me that day, but it is what he told me next that will make me remember the visit forever.

He said that the reason he was visiting the hospital was to see a little boy who was in the pediatric ICU on the 4^th floor.

He then shared with me the story of this brave little boy, who had spent most of his nearly 2 years of life, fighting for it, in the hospital.

This is Juan Pablo. He's 2 and he's adorable!

Juan Pablo was born with Metatropic Dysplasia, which is really rare form of dwarfism. It’s so rare, in fact, that he is the only known case of it in all of Mexico!

He is the youngest child of his amazing parents Roger and Marus. They have 3 other children- Paulina, Roger Jr. and Marianna. Metatropic dysplasia is a genetic condition, however, no one else in his family has it.

This type of dwarfism causes major problems in the musculoskeletal system such as limb deformities, joint contractures and scoliosis. Juan Pablo’s spinal curvature is so extreme that it has compromised his respiratory and digestive systems, leaving him dependent on a ventilator to breathe and on a feeding tube to eat.

The top specialist for this disorder is Dr. Mackenzie at DuPont Hospital in Delaware, where he has traveled to for spinal surgery and follow-up care. He will probably need to have numerous surgeries there in his lifetime.

Ironic how Juan Pi has to travel to the US for his treatment, and I have to travel from the US here.

He is in many ways my kindred spirit… We both have spent a lot of time in hospitals far away from the comforts of home.

I had a huge stuffed animal bear in my hospital room, a gift from my dad, that I called “Monty” (short for Monterrey!) I told Father Carlos that I wanted Monty to go down in Juan Pablo’s room. I know how lonely, long and scary each night in the hospital is and I knew Juan Pablo needed him more than I did. After all I was 22... he was only 2!

Juan Pablo's amazing family with Monty

The next day Juan Pablo’s family came up to my room to get the bear. Hearing what their little son has gone through in his short life… wow. Talk about a wake up call! They are such an incredibly strong family.

From that point on whenever I was having a rough time I just thought of Juan Pablo and I got the strength to get through it, whatever it was.

Juan Pablo's family's nick name for him is "Juan Pi"-- they also call him "Cham Pi"-- short for Champion. And that he certainly is!

Juan Pi has been back in Hospital San Jose for nearly 1 month now and is still unable to be transferred back onto his regular home ventilator without being unable to get enough oxygen and having episodes of tachycardia. His liver is enlarged. His lungs are full of secretions. He is sick.

I know those words that Father Carlos spoke over me are true-… There was a purpose in that delay for me—and I know part of that was so I could come to know Juan Pablo and his family. I consider them a part of my own and I love them so much.

God has a plan for Juan Pi, I am sure of it. However, right now the thought of him laying in that ICU instead of being at home with his loving family really breaks my heart. I wish there was something I could do for him… but I think the best thing I have to offer is prayer.

So I’m writing this to ask everyone to please keep him in your prayers too. He needs to get better, he just has to…

Keep fighting little Champion, You are so loved.

Thank you for praying for my special little friend.

…God’s timing is always the right timing and His answer is the always the right answer…

In God’s love,

Jessica

PS- Today is Juan Pi's amazing father, Roger's, birthday! Happy Birthday Roger and thank you for being such a great example of unconditional fatherly love to your son, even under the most difficult circumstances.

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A Special Visit :)

On Saturday Mom and I had a special visit from Kerri Jarvis and her wonderful family- dad Mark, mom Kathy and sister Erin.

Kerri is a fellow RSD Ketamine Coma patient and she is back in Monterrey for the removal of all 4 of her wisdom teeth and for ketamine boosters.

Even though our parents had spent a lot of time getting to know each other in the hospital, Kerri and I had only met once, briefly. On the day she was being discharged from the hospital she was wheeled into my room and we shared our common ‘battle’ stories with each other. At the time she was still very weak and couldn’t sit up for very long.

When Kerri WALKED into our apartment yesterday, I couldn’t believe how different and great she looked! Yes, she is walking again! (and she has a really cool pink cane!)

Kerri’s mom reminded me that on that day we first met last year I was celebrating having just eaten my very first french fry in years. I was so happy and the Jarvis family enhanced my excitement by rejoicing with me in that milestone.

Tonight we made and ate homemade pizzas together! We also ate lasagna! And cake!

The day was extra special because it was also Kerri’s birthday.

Mom made her an oreo cake with vanilla frosting and I decorated it. It’s all red and green sprinkles in honor of Mexico! I call it a ‘Mexican Explosion’ cake. :)

I know that spending her 23^rd birthday -in Mexico- for medical treatment- is definitely not quite what she had in mind, but I was so happy to get to be a part of it and to spend time with her—this time sharing health, happiness and funny stories instead of battle tales.

We serve a God of miracles!

Kerri’s dental surgery will be tomorrow afternoon. There is power in prayer. Please join me in praying for wisdom and guidance for Dr. Cantu and her oral surgeon, that the surgery goes smoothly, and most importantly, that she does not have an RSD flare up. Pray for strength for Kerri and her family today as they wait and prepare and for her continued and complete healing.

She has come so far and I know she is in the best place possible- in the safe and capable hands of God & Dr. Cantu.

Thanks for the prayers!

xoxo Jessica

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Sliding Doors.... & 90,000 views of the blog!!

Earlier this week I watched a movie a friend had lent me called "Sliding Doors." Its an older movie from the 90s, but it was new to me. (I know, I must live under a rock or something..?) I had no idea what the movie was going to be about or how it would impact my thought process that night as it did.

As the movie starts out we see the main character Helen (Gwyneth Paltrow) living a comfortable, great life in a nice apartment in England with her author boyfriend, Jerry, (who, unbeknownst to her, cheats on her everyday while shes at work...)

She goes off to work that morning like any other, but arrives only to be told that she has been fired. Bummer.

So she packs up her stuff and heads to the train station to go back home, but just as she is approaching the train the sliding doors close right in front of her and the intercom announces that the next train is not for another hour.

Obviously this is not Helen's best day. We've all been there too...

The rest of the movie parallels Helen's life in two scenarios...The one above, where she misses the train and the second in which she arrives just a few seconds earlier and gets on.

The way her life plays out in each are in complete contrast with each other. One seemingly insignificant occurrence—missing a train—not only altered the course of her day, but of her life in the bigger picture as well.

Timing really is everything.

Well, this is what got me thinking…How would my life be if certain things had happened differently? Or had not ever happened? What would my life look like right now? What would I be doing? Who would I be doing it with? …or on the flip side, Would I still even be alive at all!?

Those questions, their answers and the emotions that come along with them are overwhelming and paralyzing. The possible scenarios are endless.

Does my life resemble in any way, shape or form what I would have imagined it to or would have wanted it to, at 23 years old? Umm... No. Not even in the slightest bit.

I am learning that entertaining these thoughts really does nothing except to invite feelings of insecurity, doubt and fear… and this is exactly where my mind was going with all of this.

I needed a distraction, now, fast.

So I decided to turn on my computer...only to see in the time I was spending sitting here thinking these overwhelming “what if” thoughts about my life, this blog had just reached over 90,000 views! On YouTube, the “Counting on a Coma” report that FOX news did about my story has had nearly 50,000 views! I have several emails of encouragement in my inbox, many from others who are suffering in a similar way, some without a diagnosis, who after hearing my story are now getting the help that they need, or feeling hopeful about their situations again… This all completely blows my mind. How God would choose to use my story and pain to help others is beyond my comprehension. My strength is instantly renewed, I am so incredibly humbled.

Sure, my life may not look the way I envisioned. But God has made such incredible provision for me along the way! This is what I need to focus on and be constantly aware of. Not the doubts. Not the “what if’s”.

Interestingly, in end of Sliding Doors, Helen’s life in both scenarios has the same end result... she is in an accident. However, every detail leading up to how she arrives there—to the type of accident, the circumstances, the opportunities and challenges, the hospital she is in, the doctors who attempt to save her life, the people who are sitting at her bedside--- are all completely different.

Wow. We don’t know why some things happen. We may never know. Even though we may not always ‘see’ it or ‘feel’ it, God is always at work orchestrating our lives—every little, seemingly insignificant detail! My job, our job, is just to trust Him in whatever circumstances we find ourselves in.

That sounds simple enough. But it’s a hard lesson, one I am sure I will spend the rest of my life learning over and over, and over, again. Just like I did tonight.

I do know that He wants us to live way beyond the shadows of our doubts! And that is a promise I can most definitely trust in, always.

I just wanted to say thank you to everyone who has followed my story this far. 90,000 hits to this blog… just awesome! Thank you for all of your love, encouragement, support and prayers. I know there is no way I will ever be able to thank each person individually, but I just want to you to know that I am doing incredibly well and you have made a difference in my life, more than you will ever know and more than I will ever be able to say.

I thank God for you all!!

In God's incredible love,
Jessica

John 11:14

When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.”

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Blessings through raindrops

It has been raining a lot this past week here, thanks to tropical storm Arlene.

Finally, yesterday afternoon the rain cleared up and the sun came out. Mom and I jumped at the chance to go out and get some fresh air. There’s a little area on the first floor of our building that overlooks the mountain. I love to sit down there. Seeing the sky, listening to the birds and feeling the breeze, to me, is as amazing as it gets.

So mom helped me wheel down and she went back upstairs to make us lunch.

As soon as she left me the sky started to get really dark. Clouds started rolling in and within minutes I couldn’t even see the mountain anymore! I knew it was going to rain, hard, any second.

And it did. As I sat there getting completely soaked I found myself trying to remember when the last time I had actually felt rain on my skin was!

It didn’t take me long to remember.

It was when I was in Tampa Florida to be evaluated by Dr. Kirkpatrick to see if I was a candidate to come to Monterrey for the Ketamine Coma study with Dr. Cantu.

As we got ready to leave his office it began pouring rain. In Florida these rain storms usually only last 10-15 minutes, so we waited…and waited. But it didn’t stop.

We finally had to just go for it.The EMT’s pulled the ambulance up as close as they could to the door and worked as quickly as possible to get me in.

Unfortunately, not quick enough.

The pain of the rain hitting my skin was so intense… like both hot drops of lava and cold sharp ice picks hitting me all at once. I can’t even describe it. I decided to try and just hold my breath and stay calm so everyone could do their jobs more quickly and effectively.

Well, that plan went out the window the second a few raindrops landed on my right arm, which at that time was covered with about 50 open, bleeding skin lesions.

That did it. I completely lost it. I shrieked in pain.

By the time we were in the ambulance I was in crisis mode. The EMT’s looked on in horror as my arm changed colors, bled, contorted into weird positions and my entire body shook uncontrollably. They tried to help, but there was nothing they could do.

I remember the EMT who was riding in back with me, commenting that every hair on my body was standing straight up, like I had been electrocuted. If only he knew, that is exactly what RSD pain feels like... all of the time.

He turned to my mom, “Is it always this bad? I have never seen anything like this before.”

Yeah, that pretty much sums up RSD pain too… not like anything you’ve seen or felt before, ever.

It was only a 5 minute ride, but it seemed so much longer.

As I thought back to that last time I felt the rain, I was overwhelmed with how different it felt to me now.

Here I was, getting drenched… and I felt… wet. No boiling lava or stabbing icicles. Just happily wet!

When my mom realized it was raining, she rushed downstairs expecting to rescue me… but instead, she found me sitting there, taking pictures of the (now invisible) mountain, loving the feeling of the rain! We both sat in the rain together for a few minutes literally soaking it all in, thanking God for bringing us to this point.

I had heard a song earlier this month that I really liked. It is called “Blessings” by Laura Story. The chorus of the song goes, “What if your blessings come through raindrops/ What if your healing comes through tears/ What if a thousand sleepless nights are what it takes to know You’re near/ What if trials of this life are Your mercies in disguise."

I liked the song originally because of its message of how even in the hardest, most painful things we will ever go through, God is always there to love us, guide us and help us through.

But now, this song has a dual meaning to me... Yesterday, my blessing literally came through being able to feel raindrops!

These are the pictures I took as the storm approached:

This is what it looked like when mom brought me outside

This is about 3 minutes later!!!

Thank you Jesus for the rain and for bringing us through it! Amen!

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