Wednesday, May 5, 2010

Cinco De Mayo

Hi everyone,

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What exactly is Cinco de Mayo?
Literally translated from the Spanish as the fifth of May, the day marks the victory at the Battle of Puebla on May 5, 1862, over the French, who were trying to take over the country. The smaller, less-equipped Mexican army scored a surprise win as French troops invaded during the Mexican-French War. Ultimately, the Mexicans lost that war, and the French ruled, for a time. The big holiday in Mexico is actually Mexican Independence Day, commemorated on September 16. Yes, we agree, Cinco de Mayo is catchier and a lot easier to remember—even though it's not as important.

While the day is largely ignored in Mexico, with most of the celebrations occurring in Puebla, Americans toast it as a celebration of Mexican heritage.

Update on Jessica:

Yesterday we said goodbye to Blair and his friend George. I presented him with his "coma bear". This is the 18th bear I have made since here. I think he was very touched by it. He named it "FED"- which was actually his nickname before he got ill with RSD. (FED stood for Fun-Every-Day) The hope for all patients that suffer with RSD is to one day be able to have "fun" again!
Jessica is trying every day to continue to accomplish the small steps she needs to take. We are going to try to see if we can get her to sit up better by using a medication for the orthostatic hypertension. She is currently able to watch TV - albeit for short spans of time, at low volume, and only if it is in English (which limits the programs available to watch) and no commercials that flash in and out. She has been running a low-grade fever and so Dr. "Febricula" (aka Dr. Dillman) is running cultures to make sure all is OK and too rule out infections.

Also, last night Jessica's Dad and sister Michelle went to see Jessica's doctor, Dr. Liegner, give an informative discussion on Lyme disease treatment and prevention in Great Neck, N.Y. It was good for them to see him again and to tell him about how Jessica is doing. He is a very special man to us and we are here today because of all he has done for Jessica.

Because May is designated as Lyme Disease Awareness month, and it is something that Jessica is very passionate about, please watch the following video:

In God's Love,
Sarah Gina

***To Post A Comment, CLICK on Comments Below***


Team Jessica said...

Jessica we will never give up the fight or the light of hope for all that are touched by lyme disease! You are the gift God is offering to the ones who do not know yet that THERE IS HOPE and we support YOU!!! Be strong and know you are honored and loved!!

Peace be with you,
Nancy and Joe

Anonymous said...

Way to go, Jessica! You are working very hard and are ACCOMPLISHING all those small steps and moving forward!

Thanks for all the information on Lyme Disease. I am sure it will help more people than you know!

We will keep praying for you, your whole family and all the RSD and Lyme patients!

With love & prayers,
The Turners

Anonymous said...

Have you see these websites:

You might be able to find short stuff to watch (in english).

Deb Cavacchioli said...

Jessica, You are such an inspiration to all of us - what courage and persistence and stamina and, most importantly, faith you have in keeping up the good fight! I was diagnosed with Lyme's Disease in January 1996 after I had received a tick bite in August, 1995 and it was misdiagnosed. I had bizarre symptoms, some very difficult. After the diagnosis, God put me on proper antibiotics and had me increase the Shaklee whole food supplements I had already been taking. Within weeks, I was healed. I pray for you continually and want you to know that your Resurrection Family loves you and is "standing in the gap" for you. Don't give up. "With God, all things are possible." He is mighty and can do anything! We lift you up and send you lots of love and prayers.
Under God's Grace,
Debbie Cavacchioli

Anonymous said...

I thought you guys would appreciate a real conversation I had the other day with my Mom:

ME: "Wednesday is Cinco de Mayo"

MOM: "Oh, Cinco de Mayo, isn't that when someone rescued someone from something."

Thanks Mom. That was helpful...

Praying for you guys! Hope you are able to get this infection thing sorted out.

In His Great Love,

Lindsay Spengler

John and Rosemary said...

Hi Jessica and Sarah,

Thank you for the video link on Lyme disease; we found it very informative. You are doing a great job in raising awareness about this disease. You remain selfless in your quest to help others avoid the same pain and suffering you have had to live with for so long. We admire you, for so many reasons.

We have a friend here at home who suffers with Lyme and we live in an area that is a real hot spot for this disease. Even so, it is very often misdiagnosed or is diagnosed later in the disease process after much damage is done.

Did we ever tell you that we live in an area where there is a large Hispanic population? Yes, and Cinco de Mayo is celebrated with huge parades, food, music and dancing! They estimated that 15,000 people turned out for this years parade. Of course, John and I couldn't go, but it is still nice to live near what we consider our small piece of Mexico! Like you and your Mom, we have come to love the Mexican people for their warmth and hospitality.

We miss you both and think of you every single day. Jessica, you are an amazing source of inspiration to us. We hope that the coming days find you feeling better and infection free. We're praying for you to stay strong and to have progress in your recovery.

Lots of love,

Rosemary & John

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!