I'LL BE HOME FOR CHRISTMAS!!!!!

…and NOT only in my dreams!!!!!

We have booked our flights home!! (Again!)

It had been a bit crazy here with a rough week after I had my bisphosphonate infusion. I had a rare reaction that caused my white blood count to drop very low and I was pretty sick with a fever for 10 days. Thank God I am much better this week and feeling back to my normal (or abnormal?) self again.

Dr. Cantu came over to check in on me and told us that my white count has now recovered- to a more normal level- all on it’s own!! Which is really great news!

We all decided that I will not be having another dose of that medication again. We will figure out something else at a later date.

For now, the most important thing is that I will be able to come home for Christmas!!!

The other day, our great friend Rosemary offered to help us book our trip to save my mom some aggravation.

It was so nice of her. We knew that this was not a small undertaking!

She proceeded to call Delta airlines from her home in Pennsylvania, with us watching her via video skype chat from Mexico (isn’t technology great?!)

A guy named Mike picked up the phone and she spent the next 10 minutes explaining RSD and all of my special medical requirements for the flight.

“I know this is a lot… and there are going to be some problems… ” Rosemary said.

Mike’s response back was quick and in a cheerful voice he said, “No! Don’t worry! On my line, I don’t have problems...I only have solutions!”

He wasn’t kidding!- Within about 30 minutes we had our new flights booked and Mike had spoken with his supervisor about all of the medical details.

Everything worked out- perfectly! Not one problem!

Even better yet, after hearing our story, Mike said he was honored to be a part of my homecoming and completely waved the fee’s that we owed the airline for canceling our previous flights! We would also be able to sit in the 1^st row of first class on both flights! Awesome!

We thanked him for all of his help and gave him the link to this blog, so he could follow my progress and journey home.

Mom and I are still kind of in shock at how easily it all seems to be coming together this time around! We are so thankful, so happy and soooo excited to be coming home! Finally!!!

Please join us in praying that God continues to clear the path before us and for everything to continue to go this smoothly as we make our way home… for Christmas!!! ahhhh! I still can’t believe it!!

See you all very soon!

In God’s Love,

Jessica

"This is what the LORD says— he who made a way through the sea, a path through the mighty waters, who drew out the chariots and horses---“Forget the former things; do not dwell on the past. See, I am doing a new thing!" (Isaiah 43:16-21)

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Happy Thanksgiving to all of our family and friends!

We want to wish a blessed Thanksgiving to all!

I don’t know of anyone who has more to be Thankful for this year than our family does.

We have been overwhelmed by the amazing mountains God has moved to allow Jessica to be able to receive the treatments that have been so successful for her and to be cared for by Dr. Cantu, who is dedicated to her complete healing.

What I have come to know and believe is that we have been truly surrounded by very compassionate people. Truly compassionate people are often hard to understand. They take risks most people would never take. They give away what most people would cling to. They reach out and touch when most would hold back with folded arms. Their caring brings them up close where they feel the other persons pain and do whatever is necessary to demonstrate true concern.

Through this journey, God has been our strength—but YOU have all served as his body, his hands and his feet!

Today (and everyday) we thank Him for the truly compassionate people in our lives- our amazing family, friends, church family and community- and all of what you have done for us- I don’t know how we will ever to be able to thank each person who has helped to make Jessica’s recovery possible, but we will find a way! We know we have been so blessed!

So, this Thanksgiving, we want to personally thank you all for being those “compassionate” people and may God bless you all today with a bountiful feast and a truly blessed day!

In God’s love, always,

A most thankful Mom,

Sarah

The LORD is my strength and my shield; my heart trusts in him, and he helps me.
My heart leaps for joy, and with many songs of thanksgiving, I praise him. (Psalm 28:7)

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100,000 views of the blog!!! & Out of the hospital!

Hi everyone!

Well, I am home from the hospital! Our small glitch in getting the medication turned into a little bit of a big glitch and it took a few days to locate and get it.

Right now I’m running a fever and feeling completely worn out, fatigued and achy as side effects from the infusion, which was expected. Overall, I am doing alright and I’m sure I will be feeling better and have my energy back in a few days once the medicine is out of my system.

I was so surprised to log online today to realize that while I was in the hospital this blog has reached 100,000 views!!!!!!

That’s amazing!!! Thank you to everyone who continues to follow my recovery and keep me in your thoughts and prayers. I will never have words to express my gratitude!

As you know, Friday was Veteran’s Day in the US. What most people probably don’t know is that RSD actually started with our soldiers! The first descriptions of it were documented about 125 years ago during the Civil War (1861-65) by Dr. Silas Weir Mitchell, a young US Army physician, who treated soldiers with gunshot wounds.

He described pain that persisted long after the bullets were removed the soldiers. He noted that the pain was characteristically of a burning nature, and named it "causalgia" (Greek for burning pain) which he attributed to the aftermath of their injuries.

Dr. Weir Mitchell, a neurologist, was very perplexed by what he was observing. He carefully documented how his patients, who were formerly otherwise healthy men, lives had been forever changed by this peculiar, burning pain, that he described it in one article as,

"the most terrible of all the tortures which a nerve wound may inflict."

He finished the same article by stating:

"Of the special cause which provokes it, we know nothing.”

Over the past hundred or so years, a lot of different names have been used to describe this bizarre syndrome- causalgia, algodystrophy, postraumatic dystrophy, Sudeck's atrophy, shoulder-hand syndrome, reflex sympathetic dystrophy (RSD) and more recently, complex regional pain syndrome (CRPS).

No matter what you decide to call it, RSD/CRPS is now known as a chronic, incurable neurological disorder in which the autonomic nervous system—the system that transfers signals from the central nervous system to various organs throughout the body—malfunctions, causing nerves to misfire and send constant pain signals back to the brain.

Today, research has brought us far from when RSD was first observed during the Civil War. It’s now known that RSD is not thought to have a single cause, but rather multiple causes producing a similar syndrome.

RSD most commonly develops in response to physical trauma-- About 65% of cases of are triggered by minor trauma (soft tissue injury, sprain, twisted ankle, venipuncture, etc). The next most common triggers are the result of bone fractures and surgery.

Current research suggests that an excessive immune response, possibly due to latent infection, may be the culprit, at least in some cases. It can also be brought on by spinal cord disorders, stroke or heart attack.

However, no matter what the underlying cause, the result is the same: horrible, excruciating nerve pain.

On the medically accepted McGill Pain Scale (0=no pain -to- 50=worst pain) RSD (causalgia) is ranked as the most intense and extreme type of pain you can possibly experience… above a bone fracture, cancer pain, childbirth and even above amputation!

McGill pain scale

Tom Haederle of Johns Hopkins University has described RSD like this: "If Hell were a clinical medical condition, it might look something like reflex sympathetic dystrophy."

I think anyone who has suffered with, or watched someone suffer from RSD would have to agree.… It’s that bad.

Dr. Schwartzman, who is internationally known for his extensive work and research in RSD/CRPS over the past 30+ years has said he doesn’t think there is a worse pain problem than RSD. I think he is right.

The bottom line is diagnosis is difficult, prompt treatment is critical and more research is needed.

When I got home from the hospital this afternoon as I was laying in my bed I saw a para-glider fly right by my window!!

His parachute was orange- which is the color of RSD awareness! I think it is a sign of hope... that one day all who suffer with this pain will have the freedom to soar above the mountains created in their lives by this illness.

It definitely looks like a LOT of fun!

Again, thank you to everyone who has helped me to gain my freedom from the pain of RSD, please continue to pray for all of those who are suffering and for a cure to be found, soon. ...100,000 views of this blog-- that is a lot of people! Imagine the awareness we could all raise, together?!

In God's love,

Jessica

"...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

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At the hospital...

Hello everyone!

I just wanted to give a quick update that I am here at the hospital and everything is going well so far. Yesterday morning our wonderful friend Elizabeth accompanied us to the hospital and I was admitted and got up into my room very quickly.

The amazing Dr. Green Shirt met me in my room and introduced me to Dr. Izquierdo, who will be assisting him with my treatment this week. In typical Jessica fashion, I had to give him a nickname as I have with all of my other doctors here! In spanish “Izquierdo” means “Left”… so he is now known as “Dr. Lefty” by me. :)

Yesterday afternoon my mexican grandma, Dr. Rainbow, came to visit and I was able to go and have a nice lunch outside by the pretty water fountain with her, which was great!

There is a gorgeous chapel here and today for the first time I was able to go downstairs for the 7:30 am mass- It was my first time being at a church service in over 5 years!!! It was so special to me! Somehow hearing a sermon, songs and the Lord’s prayer being said in spanish, made it that much more emotional and even more amazing.

God has been so good and so faithful! I am really just overwhelmed by the thought of it all sometimes. The mountains that I have seen moved, literally right before my eyes… It’s amazing, really.

As I sat there reflecting on all I have been carried through, two other fellow RSD patients were heavily on my mind- Irene Turner, who is always leaving lovely messages of hope and inspiration on my blog, had surgery to amputate her finger this morning, in hopes of alleviating her horrible pain, and Blair Webber, who has been in the hospital in Canada with RSD related complications for over 1 month now. I am praying that God will guide each of them to healing, as well as all who are suffering with RSD.

Last night I had an IV Calcium infusion and right now I am just sitting in my room visiting with some friends while waiting to start my first treatment… There was a little glitch in getting the medicine, but as always, Dr. Cantu is on top of it and hopefully it will be arriving within a few hours and we can start later tonight or early tomorrow.

Please pray for the medicine to get here, for the infusion to go smoothly and for the bad side effects that are common with this type of treatment will be minimal (or better yet- none at all!)

Thanks as always!

God bless!

Jessica

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It's RSD Awareness Month!

Hi everyone!

Happy belated Halloween :)

Before I was sick, my family used to go all out for Halloween. We were always the first house on our street to have our decorations up and my mom was notorious for her clever costume ideas she came up with for my sisters and I. I have many good memories!

So, even though it is not widely celebrated here in Mexico, Yesterday I celebrated my first Halloween in over 5 years!

We made a “Haunted” Gingerbread house…

And I carved a pumpkin!!!

My nurse who has become one of my close friends, Angeles, came over and made Halloween cupcakes with me!

It was her first time ever celebrating Halloween!

My crazy mom agreed to dress up with me and we went trick-or-treating (giving out the cupcakes) to the people we have gotten friendly with in our apartment building!

We were a doctor and a patient.

So original, I know…

(Thanks to Dr. Rainbow for letting my mom borrow her doctors coat! …My costume was obviously courtesy of Hospital San Jose. :)

Later last night a few friends came over to see our costumes, take pictures and eat candy with me!!

It was a great day and my most special Halloween yet!

...Which brings me to today. November 1^st.

November is RSD Awareness month, and as I continue to make great progress in my recovery and experience all of these new, happy memories in my life I continually find myself thinking about all of the people who are still suffering and fighting with the horrible pain this disorder causes every minute of every single day… Especially those I’ve come to know and love through my journey here.

Last November I posted this blog about RSD along with this video, which I think deserves to be re-posted and re-watched-

Much of what I wrote at this time last year remains the same...

RSD is still a horribly painful, complex, mysterious and very confusing disease. There are still more questions than there are answers for many RSD patients.

We still need more awareness. We still need more research on the causes, prevention and treatment options for RSD… We still desperately need a cure.

However, this year, I write with much more hope and confidence that we are getting closer.

I have seen firsthand how far the wisdom, compassion, knowledge and dedication of the right doctor can go to bring even a patient with one of the worst cases of RSD, like me, back to the level and quality of life that I am now blessed to enjoy.

My hope and my prayer is that there will continue to be more answers, for all of us, who are dealing with this illness and for continued perseverance and understanding for the doctors who I know are working so hard on our behalf to lead us back to better, less-painful lives- especially Dr. Cantu and his team here!

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Tomorrow I will be going back into the hospital for treatment to strengthen my bones. This is a new treatment for me (probably one of the only medications in the world that I have never had before!) so please pray that I tolerate the infusions well with no adverse effects so that my time in the hospital will be minimal and I will be strong enough to come home!!

Thank you for continuing to check my progress and keep me in your prayers. I will update again in a day or two from the hospital and be posting more information about RSD during awareness month.

God bless!

Jessica

"Now faith is being sure of what we hope for and certain of what we do not see." (Hebrews 11:1)

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