Sunday, November 13, 2011

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


*To Post a Comment click on Comments below*

44 comments:

Anonymous said...

Jessica, you are an inspiration to me, thank you for sharing your struggle against pain and suffering and this road that you traveled.

I love that you are able to hold so tightly to your Faith in Jesus Christ, and share that love with others.

I pray that your struggles in the journey you traveled will help others to understand this disease more, to find a cure.

Anonymous said...

"But He knows the way that I take; when He has tested me, I shall come forth as gold." Job 23:10

Sending you a hug from one who prays for you in Indiana, USA,

Rosemary and John said...

Dear Jessica,

As usual, your post has reached out and touched our hearts from 1,998 miles away.

Because you suffer from both RSD and from Lyme disease, you have been in a unique position to teach and lead others to a point of understanding a very complex disorder from a patient's perspective. You have never just sat back and felt sorry for yourself but have used your illness as a tool to teach others. You have taught family members and caregivers what it is like to suffer from the horrible pain of RSD. You have even taught medical providers things previously unknown about this disease because they are learning from you. You have been and continue to be a trailblazer for other patients who will follow behind you. We admire your amazing strength and Grace under such extreme circumstances. May God continue to give you the strength you need to win this war.

Pssst...The photo of the para-glider is just awesome! I am not sure who had the better view. You or the glider? I'll bet she (yes, I am sure it is a she!) would LOVE to have that photo!

Keeping you, your Mom and your family and also your many wonderful doctors in our prayers always.

One day at a time taking baby steps!

Love and hugs,

Rosemary and John

Anonymous said...

It is strange to realize that RSD / CRPS has been around for such a long time yet they still have no cure. Thanks for such an informative post. May God use this to further educate the medical community and bring forth a cure.

We will pray that the side effects of your recent treatment will pass quickly and that you would be feeling better very soon.

May God continue to bless you and your family and may we soon see your beautiful faces on this side of the border.

With love and prayers,
The Turners

Anonymous said...

I am curious as to why they continue to call this disease incurable when we have seen so many overcome this illness (such as yourself) and go on to live normal lives. Would they not be considered cured?

Anonymous said...

100,000 views! Great! It is wonderful that you are now well and able to educate the rest of us about this "hell" of a disease you have dealt with- and conquered!

I know it is a slow process; but with prayer and your determination - I expect more progress to be made on a continuing basis!

I hope your infusion effects disappear and you can plan your journey home.

With love.

Fern said...

Good information! It is similar to the info I gave at our church on Thanksgiving Sunday (Canadian). It is good to educate and also to see how are things going.
You remain in my prayers and it is my heartfelt prayer that you will be well and enjoying normal life again so very soon! It is my heartfelt prayer for me as well!

Josie said...

Jessica. Welcome Home. I pray for sustained comfort
and relief from your pain. You, like my brother-in-law,
John, are the great ones among us who teach us how
to deal with our own sufferings with a measure of Hope. Thank you. Keep your parachute soaring and enjoy the
View. Love, Joanne (DiGiovanni)

Anonymous said...

Welcome home! You and your mom must be pleased to be back!
Despite what you endure you write in such an encouraging way. 100,000! an awesome update and praying that it all goes smoothly from here on.

Anonymous said...

Woah! That is the view from your bedroom! How gorgeous. I bet is is spectacular to wake up seeing THAT each morning. God bless you and your amazing family. I cant wait to hear of the day you are all reunited... Keep up the hard work. We love you very much!

Anonymous said...

Such a good read -I never knew RSD started out that way. Though I don't know you, you come across as a remarkable woman. Thank you for continuing to share your courageous journey.

Try to rest well these next days and enjoy your beautiful life.

DanImports said...

Get well soon

Anonymous said...

Hi Jessica and Sarah Gina (and dad, sisters, and Molly!) Just want you to know you are all always in my thoughts and prayers. So sorry to hear you were back in the hospital, but hopefully you will reap the benefits from the treatment as the side effects lessen. 1000000 people are still cheering you on! Keep positive!

Love, the Millers of Pa

Anonymous said...

hey Jessica --

WOW! This blog is a must read for all. Thank you for always being able to explain even the most difficult & complex in a way that is so understandable. I feel like I have had many "Oprah Aha Moments" reading your blogs ... This time was certainly one of them.

Our thoughts are with you ... You're almost there ... You are BEAUTIFUL & AMAZING!!!

With love to you & your Mom
the Klatts

Anonymous said...

Pretty interesting read. Never knew RSD had been around that long, your story was the first I ever heard of it.

I know better and better days are around the corner for you and you will soon be flying one of those para-fliers too.

Keep the faith.

Anonymous said...

November is RSD/CPRS awareness month. Please help spread the word and help us find a cure!

Did you know that it is estimated that 50,000 new cases of RSD/CRPS will be diagnosed in the USA alone?

Help raise awareness and post this blog to you facebook page.

HELP STOP THE BURN!

Anonymous said...

Hope you are starting to feel better. You remain in our prayers.

Anonymous said...

Upcoming Research Conference For Medical Professionals 
IMAGING NEUROINFLAMMATION WORKSHOP

This  workshop was for Physicians only and by invitation only. 

American RSDHope was excited to play a small part in helping to fund this workshop that was put together by the RSDSA. Also  providing funding were such organizations as; The TMJ Association, National Fibromyalgia and Chronic Pain Association, National Spasmodic Torticollis, Facial Pain Association, and several others. The RSDSA committed a great deal of the funds raised from several of their programs this year towards this program. There were also thousands in private donations and many corporations  also jumped on board. It has exciting and amazing potential for a wide variety of neurological and pain diseases. 

What exactly was it all about? 

In a nutshell Dr Mark Cooper, University of Washington, explains it well;
During the past 20 years, numerous neuropathologies have been linked to the activation of neuroimmune responses in the CNS.   Microglia and astroglia, two types of glial cells, are key cellular mediators of these neuroinflammatory responses.   Activated microglia have been linked to Alzheimer’s Disease, Parkinson’s Disease, Huntington’s Disease, multiple sclerosis, amyotrophic lateral sclerosis (ALS), and chronic neuropathic pain disorders.  Activated microglia have also been found in the brains of autistic children.  Recently, patients with schizophrenia have been found to respond well to pharmacological agents that attenuate activated microglia.  Widespread evidence now indicates that a large range of neurodegenerative, pain, motor, and affective disorders involve neuroinflammatory processes mediated in part by activated glia.

New radiological and biophotonic imaging methods have been developed to image activated glia in the central nervous system.   In addition, magnetic nanoparticles have been developed to image leukocyte infiltration into the central nervous system.  

Anonymous said...

Overall, these imaging methods open new clinical approaches to: 

(a) detect and diagnosis neuroinflammation; and (b) assess the efficacy of therapies aimed at controlling neuroinflammation. 

It took place October 13-15, 2011 in Albuquerque, NM. 

The Organizers were;

Mark Cooper (University of Washington)
Vince Clark (University of New Mexico)
Erin Milligan (University of New Mexico)

What an amazing amount of information was packed into those days!

The topics ranged from; 
THURSDAY - Social Dimensions of Pain, Medical Education in Opioids in the Management of Pain, Migraine Pain and Forming Partnerships with ECHO, National Perspectives in Continuing Medical Education for Pain, Forming a Neuroinflammation Knowledge Consortium, Keynote Address - The Toll of Opioid-Induced Glial Activation: Improving the Clinical Efficacy of Opioids by Targeting Glia; 

FRIDAY - MRI, Neuroinflammation, and Pain Processing, Imaging Pain with fMRI, Central Mechanisms of Pain: fMRI Analysis, Altered Brain Functional Connectivity of Patients with CRPS: a fMRI Study, Imaging Neuroinflammatory Processes with MRI and Nanoparticles, PET and SPECT Imaging of Neuroinflammation, PET and SPECT Imaging of Neuroinflammation Spinal Inflammation in Neuropathic Pain, SPECT/PET Imaging Probes for Inflammation, Next Generation of SPECT/PET Imaging Tools, Combining Nanobodies and SPECT for Molecular and Cellular Imaging of Inflammation, Visualizing Neuroinflammation in Bioluminescent Transgenic Animals, Imaging the Spread of CRPS with Thermography, Keynote Address- Visualizing the Complex Dynamics of Neuropathic Pain;

SATURDAY - Clinical Applications of Neuroinflammation Imaging; Neuropathic Pain: Medical Compensation Issues; and ending on the last day, last topic with a panel discussion on "What needs to be done to translate imaging technologies from lab to clinical research; from clinical research to clinical practice?"


Unfortunately this Workshop was not open to patients but we will be sure to share their findings on our website as soon as possible! They are putting together a synopsis as we speak. 

Peace, 
American RSDHope
http://www.rsdhope.org/upcoming-conferences.html

Anonymous said...

Lori Drummond

FAITH is for the days of hopelessness
COURAGE is to get us through the day
STRENGTH is living with the pain everyday
HOPE is for a cure for RSD!!

Anonymous said...

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Anonymous said...

Jessica, i came across your blog while researching CRPS, as I am newly diagnosed. This is certainly an interesting story about the origins of it. Thank you for explaining it so well. I hope your recovery journey continues and you will keep spreading awareness to help others. God bless you.

Bill Hayes said...

Jessica,

My wife, Pat Barry, had a second ketamine coma when John and Rosemary Roach were in Monterrey for his coma. This must have been around the time of your coma, too, but I don't think we crossed paths. I've just now found your blog and was pleasantly surprised to see you mention the Roaches! I have lost their contact information, and would be grateful if you could pass mine (whayes@llu.edu) along to them, or simply send me theirs.

I'm pleased to learn of the successes you are having in your fight. Keep it up. Your faith is awesome. And do pass on to Dr. Cantu our warmest wishes (from Bill Hayes and Pat Barry).

Blessings,

Bill

Anonymous said...

You are a very strong girl. Praying for a speedy recovery from this, too!

By the way, Very pretty scenery.. . .

Rosie Harper said...

Lori Drummond FAITH is for the days of hopelessness COURAGE is to get us through the day STRENGTH is living with the pain everyday HOPE is for a cure for RSD!!

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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!