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.
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...
Thank you for sharing Sarah......
Sherri
sherri.jones@live.ca
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!
Sherri
sherri.jones@live.ca
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