Jessica's Journey: Necklaces Are Back!

Sunday, February 28, 2010

Necklaces Are Back!

To Order Jessica's Journey Necklace, CLICK ON LINK :

http://www.etsy.com/view_listing.php?listing_id=41687962

Hi To Family & Friends,

SPECIAL NEWS:

Jessica's necklace is back in production! I have heard from the Mah Family of Lymelinks/Etsy and they have received all the necessary materials & stones to start making more of Jessica's necklaces. They go on sale once again today! I would personally like to thank Brian & Michelle Mah for all their help and for donating all the proceeds from the sales of the necklaces to Jessica's Journey Fund! Please support them as well, as they are going through their own battle with Lyme disease, by visiting their website for many other jewelry items. Necklaces will be shipped in @ 1 - 6 weeks. Any questions - you can contact Brian Mah at: www.lymelinks.etsy.com.

Thank you all & May God bless you for your support!

Update On Jessica:

Jessica continues to try to take the "small steps" needed. For the past week she has been trying to go on her computer at night, while it is quiet and dark, to see how much her brain can handle. After the coma, it is necessary to work with your brain in the re-setting process. For her, things that may have taken her a shorter amount of time to do before, now require a much longer amount of time. This can be frustrating at times for her, but she knows she needs to take things slowly and try not to push herself farther than her brain will allow her to go. "Small steps" as Dr. Cantu always says! For now she goes on her computer at night for short periods of time and she tries to slowly increase it as tolerated.

Thank you all for always keeping Jessica in your thoughts and prayers. It means more to us than you can ever know!

Special thanks to Blanca Canavati - a woman that I met who is from Monterrey and visits everyday with her relative who is in the hospital. We speak when she visits and she has offered her help to me while I am here. Yesterday she brought me a present - a beautiful fleece blanket - to keep warm! Thank you so much Blanca! The people I have met while here in Mexico have been so very compassionate and truly amazing!

In God's love, always,
Sarah Gina (Jessica's Mom)*

"The mind of man plans his way, but the Lord directs his steps".
Proverbs 16:9

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

14 comments:

Madelon said...: Hi Jessica and Gina,
I am so happy to hear about Jessica's small steps! I have been making my own small steps literally. My leg muscles are getting stronger after my hip surgery and I am trying to lean less and less on the walker to get around. I still need it for support, but not as much as last week. Praise God for his healing powers! I'm hoping to use a cane this week.
It is great to hear that Jessica is now going on her computer at night. What a day that will be when Jessica posts her own blog!
All these small steps are making one wonderful journey...no sunglasses, earplugs instead of earphones and now trying to go on the computer. My prayers continue for both of you...for the strength and the patience to continue this journey and for the healing. God bless you both! Thank you for your inspiration!
Have a wonderful Sunday!
Madelon; February 28, 2010 at 9:28 AM
Anonymous said...: More small steps forward! Great news!

I know it seems really slow now but you will look back on this in a few months and see how far you have come.

It is like when you learn to drive a car. It seems like there is so much to remember: check your mirrors, scan the area, check your speed, are there any pedestrians, what are the other drivers doing, shoulder check, signal light, etc. At first it seems like there is too much to remember and after a while it becomes so easy we wondered why we thought it was so difficult at the start.

You can do it, Jessica! Hang in there!

With love & prayers,
The Turners; February 28, 2010 at 3:57 PM
Anonymous said...: No words of wisdom from me tonight.
Just happy to hear that you are moving forward.
March is coming. Spring will be here soon.
Prayers,
Linda in Saratoga; February 28, 2010 at 7:19 PM
Anonymous said...: Dearest Jessica and Gina, WOW!!!!!! Jess is going on her computer??? That is AMAZING, no matter how long it takes!!! Think of a short time ago, when that would have been impossible!!! Praise be to God our Father, without whom this would have been impossible!! Jess, God has a plan for you. We may not know what it is at this moment, but we never doubt for a moment that it is true. He can see things that we can never hope to see in their entirety, but these tiny glimpses gives us the strength, the faith, and the hope to persevere and to carry on!!!! YOU GO GIRL!!!! I AM SO PROUD OF YOU AND SO HAPPY FOR YOU!!!! Gina, I miss you so much and am so proud of you for your strength, your unconditional love and your perseverance!!!!! YOU ARE THE BEST!!!! Hang in there ladies!!! We all love you so much and pray for you every day!!! Love ALWAYS, Angel xoxoxoxoxoxoxoxo; February 28, 2010 at 11:50 PM
Nancy said...: Super!! Jessica has a
re-connection to the outside world again at her fingertips. Go Girl!! I love the ENERGY that Angel gave in the comment above! My arms are tingling and heart happy just reading!

A lady at church wanted to know where I got such a beautiful necklace...(wrote Jessica's site right on her bulletin) so I'm so happy they are being shipped again! Thanks Mah family, peace be with you!
love, Nancy; March 1, 2010 at 9:16 AM
Fern said...: Hello Gina and Jessica,

I got this post a day late since it was my youngest son's birthday yesterday and so was away for much of the day! I have tears in my eyes from this post! tears of utter joy! How grateful I am to God, to Jessica's tenacious spirit, to the encourager that Gina must be in all these new things, to the continual support that shows up in the strangest of ways! God is truly to be praised for orchestrating all of this and for supporting Jessica as she rises to each new challenge!

I am so lookiing forward to seeing you both very soon! It makes the long trip worth it when I get there to be with you, Dr. Cantu (who is definitely being used by God) and the break I get from this struggle, if only for a short time.

Be well and have a day to smile today!; March 1, 2010 at 10:34 AM
Kathy Roosma said...: Praising God today for the small steps that I am reading about that Jessica is taking! To be able to be on the computer is fabulous! I will continue to pray for small steps every day.
We will be there this week and will be able to see you again and hopefully pray with you too.
Kathy; March 1, 2010 at 10:53 AM
Anonymous said...: Praise God for Jessica's "small steps!" Crystal; March 1, 2010 at 11:36 AM
Anonymous said...: Dear Jessica and Gina, "Every good gift and every perfect gift is from above, coming down from the Father. James 1:17
Thank God for all of the "small steps" and good gifts. Praying that these will be just the start of many progressive steps. Blessings to both of you and to your many caregivers and supporters.
With love,
Linda Wardley; March 1, 2010 at 11:37 AM
Anonymous said...: I sit here writing to you today with joy in my heart for the steps Jessica is taking.Also my own personal joy....my grandchildren are visiting for 2 weeks & it brings me such joy.I thank GOD every day for them.But I really have the both of you to thank for my joy's in my life have taken on more meaning because of your journey.You have both changed me in ways I can't express without crying.All of lifes moments seem more precious now! So from the bottom of my heart thank you for sharing your story.May GOD shine brighter for you each & every new day. Blessings,Jodi XOX
PS.one day we must meet; March 1, 2010 at 4:04 PM
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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.