Tarlov Cyst Patient - Welcome to Sarah's Life

Once in awhile I do a random search for the words, "TARLOV CYST". I search on every search engine out there, including; YouTube. The attached video is one I found this morning on YouTube, after waking at 4am in agony; It's now going on 6am and finally the torture of sleeping on my stomach is beginning to pass.

Unfortunately, no matter what I try, I have no control over the position my body moves into while I sleep. Each time I'm woken by the pain of laying on my stomach means it could take anywhere from five minutes to half an hour to gradually push myself out of that painful position. If I'm lucky there will be someone around to slowly and carefully pull me out of bed. As my body moves I can feel every, disc, joint and connection that keeps my back and hips together crack slowly back into place. It's definitly not the best feeling to wake up too, but oh well.... such is my life.

The life of a Tarlov Cyst Disease Patient is never an easy one to live. Everyday, every night, every moment and decision is a lesson in pain, perseverance, fear, frustration and anger, but as you'll see from Sarah's video, a life suffering from Tarlov Cyst Disease can also be a very lonely one.

Many diseases present with constant chronic pain as one of the major symptoms and Tarlov Cyst Disease is certainly no different. The only difference that I and thousands of other patients have discovered is no one knows what Tarlov Cysts are and they especially don't understand what this diagnosis means to the life of the patient living with it. It's a diagnosis that comes with a very limited medical understanding.

Dear Sarah... and every other patient out there I want you to know, "you are not alone". There are many of us out here who suffer right along side you; we truly do understand many of the issues and challenges you live with.

I truly hope this post helps Sarah and many others 

connect with other patients diagnosed with Tarlov Cyst Disease. 

To the left of the posts are a long list of links that can connect any patient with existing and active support groups. There's also extensive medical information throughout this blog and of course, the Tarlov Cyst Disease Foundation; our champion of Tarlov Cyst Research, Education and Colaboration.... Feel free to contact the Foundation, myself and the other links to help you find a home in the safety and comfort of friends who know your pain...

As Sharon TCD Patient, and Tarlov Survival Moderator says, 

"With Love and xx Soft Hugs xx" . 

Come in and say "Hi!

Thank you for sharing Sarah......

Sherri
sherri.jones@live.ca

Please Support the Canadian, National Pain Strategy!!

Canaday Day

2011

"Without my pain management this would have never been possible. 

With pain management almost anything is possible!!"

Dear Family and Friends,

I am writing this email today to personally ask for your support. 

The Canadian Pain Coalition is working towards a National Pain Strategy to address the issues faced by Pain Sufferers across our great and beautiful Country.

I am sending this request as one of Canada’s millions who suffer excruciating amounts of pain, on a daily basis. My own personal diagnosis of Symptomatic Tarlov Cyst Disease, a rare and not easily treatable spinal cord disease, leaves thousands of patients around the Country and the World suffering with no end in sight. Many illnesses still lack treatment options and Symptomatic Tarlov Cyst Disease is just one of the many falling into that category, within Canada.

To date, there has been NO National Pain Strategy in place to assist Medical Practitioners with treating patients who suffer temporary, ongoing severe and extreme amounts of pain. This missing piece of the pain management puzzle is leaving too many patients with absolutely NO pain management to assist in their struggle to live productive, meaningful lives. 


Without this National Pain Strategy too many patients, including myself, are left to live their lives with severely limited mobility, or no mobility at all!

As Canadians learn daily through personal experience, main stream media, or social media about the ever-increasing challenges facing Canada’s Healthcare System, the importance of Pain Management increases and MUST remain in the forefront if Canada is to continue to support Rare Disease, untreatable diseases and Chronic Pain Canadians in need. With the current limited and quickly decreasing access to Provincially funded, Out of Country Care, treatment options disappear for many, leaving far too many patients, such as myself, with nothing more than a life of constant, unrelenting pain.

PLEASE support the Canadian Pain Coalition efforts to maintain hope, and a brighter future for all of Canada’s Pain Sufferers. Please read the below email and pass it along as much as possible. 

This is for all Canadians; for all we love.

Please visit: www.canadianpainsummit.ca and show your support by endorsing the Canadian Pain Strategy petition today!

My family, and I thank you.......

Sincerely,

Sherri L Jones
sherri.jones@live.ca
416-795-0617
www.canadiancitizendailybattles.blogspot.com