Friday, November 1, 2013

It's RSD Awareness Month!

November is national RSD Awareness month.

RSD (Reflex Sympathetic Dystrophy) is the crippling neurologic disorder that tried, very hard, to steal my life away from me; keeping me paralyzed in a hospital bed, with seizures & in horrific burning pain, unable to move or eat for nearly 6 years.

RSD a chronic, progressive, debilitating neurological disorder that occurs in response to an inury or illness, after which the nervous system malfunctions—causing nerves to misfire and send constant pain signals back to the brain, essentially, shutting parts of the body down.

When left undiagnosed and untreated, intractable pain and other disabling symptoms occur, including extreme sensitivity to touch, lights and sounds, severe headaches, numbness, weakness, movement disorder, paralysis, ulcerative skin lesions, seizures and softening of the bones. In its later stages, RSD can lead to internal organ dysfunction and cardiac complications. Patients may become unable to digest food, maintain stable levels of blood pressure or regulate their body temperature. RSD can ultimately ravage the entire body and its organs.

On the medically accepted McGill Pain Scale, where zero equals no pain, and fifty equals the most intense pain, RSD is ranked as a 46/50-- making it the most painful disease known to medicine!

RSD is ranked higher than pain from a bone fracture (20), cancer (24), childbirth (32) and even above amputation (38)!

Imagine if every touch cut like a knife, every breeze felt like a blow torch and even a gentle hug caused you to feel as if you were being electrocuted, if every pain medication available to you was completely ineffective?

That is what RSD feels like. And it is horrific.

Well-meaning people have said over the years, "God only gives you what you can handle...He knew you were so strong!" ... That's a nice sentiment, but it's simply not true.

On all fronts, this battle has been sooo much bigger than me, far beyond what I could ever handle, way beyond my own strength....but it has never been bigger than God.

I am so thankful for the healing power of Jesus displayed through the wisdom and knowledge of Dr. Fernando Cantu & Dr. Luis Barrientos, who saved my life! I am so thankful for my family who fought by my side, and I am so grateful for the many prayers that sustained me.

Every day that I wake up without that pain and those symptoms, I still nearly cry from shock and happiness. :)

I am blessed to be in remission... but there is still NO CURE for this horrible disease. There are a lot of people still suffering, with no way out.

I also still live with uncertainties about the future... Will I ever walk again? Stay in remission? Live a long healthy life?

Those are questions bigger than me, but again, not too big for God. I believe with my entire being that the answer to my questions is 'yes', but no matter what the future holds, I will be okay, because I know I will have Jesus' strength in my weakness, 

If someone would have told me 3 years ago, as I lay in a bed like this, that one day I would be well, out of that bed, pain free, able to eat, swim, go to school and enjoy my life... I never would have believed them. 

I want that feeling of joy I feel each morning to become a reality for all RSD sufferers.

So I am making this post as a reminder to please pray for them, that they will experience healing, peace and comfort. RSD is often called the "suicide disease", because so many patients lose hope, they don't see another option. They are tired of the pain. I lost my dear friend John this past year, and it is the most devastating and helpless feeling. 

We need awareness. We need research into the causes/triggers for this disease, We need physicians to begin recognizing ketamine infusion therapy as the standard of care in treating this disease, and for insurance companies to cover the costs, but above all of that, we need a long lasting cure. That is my ultimate prayer.

Never lose hope... 

"And nothing formed against me shall stand." (Isaiah 54:17)

To learn more, watch the following. Awareness is key! Thank you.


Rosemary said...

I love you Jessica. Thank you for all you are doing to raise awareness about this little known, misunderstood, indiagosed, misdiagnosed, mysterious, excruciating and life altering disease. Thank you for remembering John so his death was not totally in vain. May God bless you always with total remission and the ability to fight for those who cannot, speak for those who cannot and work with your wonderful doctors. May there be a cure in our lifetime for RSD/CRPS. No one should ever have to suffer such horrid pain that is described as being burnt alive and no one should ever be forced to sit hopelessly by to watch someone they love disappear before their eyes. Thank you, dear lady. I love you and John loved you very much. xoxo, Rosemary

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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!