Thursday, November 22, 2012

Happy Thanksgiving!!!



"Give thanks to the Lord and proclaim his greatness. Let the whole world know what he has done." 1 Chronicles 16:8

Happy Thanksgiving everyone!!! 

 I have begun typing this blog, deleted what I wrote and re-started about a dozen times now... I have so much to be thankful for that writing it all out seems overwhelming, if not impossible.

My gratitude runs so deep for so many reasons! 2012 has been the best year of my life so far! And today I get to celebrate my first Thanksgiving at home with my family in many years!!! I even helped prepare some of the meal with my mom and grandma! I can't wait to eat it all in a few hours!!

I know this Thanksgiving will be one of the most special yet!

As  I am sitting here, I can't stop thinking about my most favorite Turkey Day memory...Thanksgiving 2010.

Just 2 weeks after getting out of the hospital, after a very long 16 months inpatient, I celebrated in our Mexican apartment with my special-hero-angel-doctors, Dr. Cantu, Dr. Luigi,  Dr. Rainbow and their families.

That meal was prepared by my mom with sooo much love, admiration and gratitude for these amazing doctors who had saved my life and become our Mexican family.

To watch the hands of the doctor who saved you, carve the first Turkey you are able to eat in 5 years, was really beyond words and my wildest dreams!

It was all so surreal back then, and even more so now this year as I prepare to sit around our table, in my own home, with my entire family around me!

 I am so thankful for this day!!!

 But my heart is heavy for all of my friends who are not doing so well right now. This time of year it's extra important to keep everyone suffering with chronic illness/pain in your thoughts and prayers. During the years I was sick all the holidays served to do was remind me of how horrible my condition was, and each year the good memories of holidays past seemed further and further away. Holidays exacerbate the hopelessness, loneliness and limitations that an ill person is already dealing with daily. For me, whether it was smelling the food I couldn't eat, hearing the laughter I was not a part of, or being in a hospital away from it all... It was incredibly hard, and sometimes totally impossible to feel thankful about anything.

 Except for that One thing.

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)


 No matter what circumstance you presently find yourself in, Remember who He is this Thanksgiving!!

The holiday of Thanksgiving is a great reason to get together with family and eat delicious food... But "thanksgiving" also needs to be a daily practice of thanking God for what He has done in the past & trusting Him for what He will do in the future.

Happy Thanksgiving 2012 and Thank YOU to everyone who has loved and supported me and my family through our crazy journey!

Forever grateful,

Jessica
“Gratitude unlocks the fullness of life. It turns what we have into more than enough. It turns denial into acceptance, chaos into order, confusion into clarity,  problems into gifts, failures into success, the unexpected into God's perfect timing. Gratitude makes sense of our past, brings peace for today and creates hope for the future."
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Friday, November 2, 2012

It's RSD Awareness Month Again!!






Hi everyone!!

I can't believe it is already that time of the year again! November is RSD/CRPS Awareness month!

Three years ago my mom began writing this blog as a way to keep our close family and friends updated on my progress as I underwent the ketamine coma in Mexico.

I never imagined that the story would spread as big as it has, and that so many people would read and follow along! It's just amazing.

In the process of sharing our story, something that has become very evident to us is that while a very severe,life-threatening, case of RSD like mine was, is rare, RSD itself is not as 'rare' as most might think.

I was shocked after my story was on TV earlier this year by the amount of emails and calls that came, and still continue to come! So many are suffering and sadly, a lot of these stories involve children.:(

Recently my sister Michelle wrote a report about RSD for her English class. The teacher asked her to stay after class and shared with her that last year he was diagnosed with RSD in his arm following shoulder surgery. He teaches everyday through constant pain! You would never know unless you asked.

Though every story is different, the main theme is always the same-- an unexpected (usually minor) injury, surgery or illness occurs and sends the nervous system into an overdrive of constant, unrelenting, burning pain, which usually spreads to other parts of the body, causes secondary neurologic symptoms and loss of function, and seems to respond poorly to most treatments available.



RSD is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. Worse than that of cancer, childbirth and even amputation! It's a vicious cycle that has been best compared to an engine revving out of control, even though the key is no longer in the ignition.

Hearing all these stories led me to look up the 'actual' statistics for RSD in the US--

I found that RSD is listed as a "rare disease" by the Office of Rare Diseases of the National Institutes of health. However, estimates of the number of people in the U.S. who suffer from RSD/CRPS can range anywhere from 200,000 up to 5 million, depending on the source of info!

Even if you averaged those numbers, that number is still much larger than that of many other more well known diseases that get alot more funding for research :(

So, Why does it occur? What pre-disposes some people to developing it, and not others? And why is it so hard to diagnose and even harder to effectively treat?



Right now, there are more questions than there are answers. RSD is a complex, mysterious and very confusing disease. It is incredibly hard to understand, for both regular people and medical professionals alike. But I have great faith that the doctors on the frontlines of RSD research and treatment are getting closer to those answers.

I am living proof that even an extremely severe case can be reversed and put into remission with the right doctor and aggressive treatment plan.  The hands of Dr. Cantu and his wisdom in the use of ketamine treatments saved and restored my life, and I have no doubt similar treatment would be very beneficial to others with RSD, but like any treatment in medicine, though for me, the ketamine has been miraculous, it doesn't work for everyone,

Hitting my foot recently was a wake up call for me and now I live very aware of the fact that any wrong move, injury or sickness can still cause a set-back. Even though I am 1,000 times better, There is still no cure... And that needs to change!

We need more research, better access totreatments, insurance to actually cover those treatments and most importantly, an increase in understanding.

With that said, Last week I had the amazing opportunity to listen to an incredible man speak. His name is Nick Vujicic and he was born with NO arms or legs!!!



Just when you think *you* have had a rough time in life, God has way to send you a message of just how truly blessed you really are.

 If you don't already know of his inspirational story, definitely check it out- www.lifewithoutlimbs.org

Nick spoke for 2 hours about God's plan for each life and about never giving up, because if you do, you will never see what God could do in your life and you limit his power to shine through your brokenpieces.

It was very emotional to hear, and reminded me in great detail of the darkest times of my illness where I was very ready to give up, if I had been able to. (Shoutout to mom for keeping me alive!)

RSD is called the 'suicide disease' by many doctors because of the high rate of it in patients dealing with this extreme pain. It's really not something you can deal with in your own human strength.

I would like to give anyone in pain the same advice that Nick signed to me (using his mouth!!) in his book, "LifeWithout Limits"-



"Your pain IS bigger than you and your pain IS bigger than your attitude... But your pain is NOT bigger than God! Trust Him to carry you, and one step at a time, He will. Don't give up!"



I think when I was in the middle of my worst pain that advice would have probably been the last thing I wanted to hear. But we are limited in what we can see...

I know if I could have seen back then in those dark moments how well I am doing now and how much I now love my life, it would have probably made some things a lot easier!


It get's better!

We don't see the future, but God does.

I am blessed and so grateful to be feeling so well and enjoying my life fully, but when I hear stories of others not doing well, I feel very guilty.

I won't even pretend to understand why God allows a disease like RSD/CRPS to exist.

My hope and my prayer is for answers, for all of us who are dealing with this illness and for the doctors who are working so hard on our behalf to relieve our suffering and lead us back to better, less-painful lives.

If  I can come back from how bad I was, it gives me so much hope that everyone else can too....I would never say that unless I believed it 100%.

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 still suffering and for a cure to be found, soon!

Also please remember in your prayers all who have been affected by Hurricane Sandy, especially my family and friends in my hometown of Garden City, NY!  Possessions are replaceable; homes can be rebuilt and fixed... I am just so thankful to God that all who we love are safe! Hopefully they will have their electricity restored soon too!

God bless!


Jessica

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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!