Thursday, November 25, 2010

Happy Thanksgiving to all!!


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"The Lord has done great things for us and we are filled with joy."
~Psalm 126:3


Blessings To All,

We wanted to wish everyone a very special Thanksgiving Day!

Jessica and I will be spending the day with her doctors as I prepare for them a traditional Thanksgiving dinner. We have much to be thankful for this day and wanted to show them how appreciative we are to them for all they have done and continue to do for the both of us!

Till then, we hope and pray that you all have a great day today and we are ever mindful of all of God's blessings in our lives and especially for ALL of you!!!

Here is the prayer that I will be saying at dinner today:

We Give Thanks

Our Father In Heaven
We give thanks for the pleasure of gathering together for this most special Thanksgiving.

We give thanks for the food we are about to eat and for the loving hands that prepared it.

We give thanks for life and the freedom to enjoy it all.

We give thanks for so many blessings!

As we partake of this food,
We pray for health and strength to carry on, as we try to live our lives as You would have us.

We thank you for the mixture of our cultures, blending us all into one people under God.

We remember those who are less fortunate than we.

We pray you bless all those who gather here and all our families not present with us.

We are thankful right now to be surrounded by those whose lives touch us more than they'll ever possibly know!

So, please, Heavenly Father, bless this food you've provided and bless each and every one invited!

All this we ask in Jesus' name, AMEN!


HAPPY THANKSGIVING!,
All our love and thanks, always,
Sarah Gina and Jessica
xoxoxo

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Sunday, November 14, 2010

November is RSD/CRPS Awareness Month...

Please watch the following video about RSD:



Hi everyone!

Wow! I can’t believe that there has been over 70,000 views of this blog! That is just… amazing. I know that many of you who follow this blog are not just following my journey with this disease, but are also, unfortunately, dealing with it on a personal level, whether through your own battle, or that of a family member. November is RSD/CRPS Awareness Month, so in honor of that, I wanted to just share a little about the disease.

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 my case, it was triggered by neurologic Lyme Disease. The hallmark symptom of RSD/CRPS is burning pain... so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire.

There currently is little knowledge and understanding of RSD/CRPS, even within the medical community. Because of this, RSD often goes misdiagnosed during its early stages, which is when the disease is most easily treated and can be put into remission. If not treated promptly, aggressively and correctly, the RSD pain can spread rapidly.

I have met so many people along my journey who are also struggling with this disease. I have seen many improve, only to relapse because of limited access to effective treatments. The suffering with this disease runs so deep- it not only physically effects the patient, but the entire family suffers the emotional consequences that come along with this type of unimaginable, unrelenting. 24/7, pain.

Right now, there are certainly a lot more questions than there are answers for many RSD patients. It is a complex, mysterious and very confusing disease.

I believe that Ketamine can definitely be a big part of the answer, for so many. And for now, it is probably the best weapon we have in our battle against this horrible disease, for me, it has been a God-send, however, we need a cure.

For me, it has given me the chance to have a life again. I am re-discovering my love of music, movies, people… and food! I ate spaghetti and meatballs for dinner for the first time in years (thanks Mom- it was great!) Each day my mom helps me out of my bed into a recliner chair (thanks Betty!) I can now stay in it for almost 3 hours! I know to many, these things may not seem like a big deal, but for me, after being completely bedridden for 5 years and fed through a feeding tube for nearly 3, every step in the right direction is just amazing! As Dr. Cantu so eloquently puts it, “Small Steps= Huge Advances!”

I am so blessed and so thankful to be doing so much better. It hurts to think about all of the people who are out there suffering so greatly with this monster of a disease.

We need more awareness of this devastating disorder. We need much more research to find the underlying cause(s) of RSD and identify ways to treat and prevent it. We desperately need a definitive and long-lasting cure.

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 behalves to relieve our suffering and lead us back to better, less-painful lives.

In Christ,

Jessica

For more information on RSD:

International Foundation for RSD/CRPS

RSD Fact Sheet (from the National Institute of Neurological Disorders)

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) Website

“Counting on a Coma”- FOX News


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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!