cpsfboard, CPSsufferer

Lisa Budzinski

Lisa Budzinsky
Lisa Budzinski is Vice President of the Central Pain Syndrome Foundation.

Please read Lisa Budzinski’s book “At the End of the Day.”

What does anyone need at the end of any day? Peace, security, purpose and love. These elements and more are discussed with the utmost honesty and vulnerability. This book is intentionally written in a different prose to make you feel as if you are sitting and having a one on one discussion, friend to friend. Providing encouragement and giving direction to inspire the reader to discover the power that can bring hope and fulfillment At the End of the Day.

My CPS journey started with a stroke in the thalamus at the age of 37 (I am now 47).  Though my stroke occurred 9/2002, the severe symptoms did not show up until January 1st, 2004.

Since my family doctor and oncologist could not pinpoint why I was having such horrid pain all throughout my body, I went to the Mayo Clinic in Jacksonville, Florida.  That is where my stroke was pin pointed to the thalamus but after seeing several specialists there, still no diagnosis.

In the span of 7 years I saw 3 Rheumatologists, 3 Neurologists and 3 Endocrinologists.  During this time I also researched all that I could find on the symptoms I was suffering and found that CPS/Thalamic Pain fit very well and when I joined the CPS Alliance forum online, I finally knew what was happening to me was REAL and there were many others experiencing the same 24/7 pain and symptoms I was.

This horrible disease destroyed what was of my “old life”.  Such as my career that I had worked so hard at building up for over 20 years.  After CPS forced me to retire/disabled, we lost our home of 14 years and without health care, used up all of our savings for doctor appointments and prescription medications.  As well as relying on credit cards just to buy gas and groceries.

During that time and up to now, I have seen a great need for knowledge and awareness of this disease that so few know about.  Only through knowledge will others suffering with CPS be helped mentally and physically.

There is NO cure and any combination of medications that can be found to be helpful cannot and will not take away the pain and symptoms completely thus forcing those of us with CPS to figure out how to live and manage a life with dreadful pain and symptoms every hour of every day.

cpscaregiver, cpsfboard, cpssupporter

Karen Davis

Karen Davis

Hi, I’m Karen Davis, wife of CPS sufferer, mother of two, dental hygienist and secretary/treasurer of the CPS Foundation. My husband Scott was diagnosed almost five years ago, it was the result of a brain biopsy of what looked like a cyst/tumor near the thalamus. The biopsy came back benign but our lives were changed forever.

Scott was Mr. mountain man! He loved anything and everything outdoors, from skiing to backpacking you name it he did it. As a couple, we shared this love and went on many fun trips together, he even proposed on a ski trip. CPS has taken this from him and so much more. His life has to revolve around controlling his symptoms the best he can. He has to take medication every six hours, see’s an occupational therapist once a week and has MANY different doctors and appointments. It’s very hard to see the one you love in constant pain. I know he’s not the father he imagined himself to be but I try to think of it this way, maybe rather than horsing around like I know he wanted to, he’s teaching us more important values like resilience and strength of character.

For three and a half years I thought we were all alone. We went to the experts in the field and were essentially told that Scott just needed to keep taking his meds, keep trying to work and trudge ahead. While that is fine advice it didn’t give us any help on an emotional level. It was then that we found Louise Mowder’s blog, Scott finally convinced me to read it, and I literally could not believe there was someone who was using his exact same words! I immediately joined the FB group and was again amazed at how many people had my husband’s condition.

I know how hard this disease can be on the family. It is to promote public awareness and support for CPS sufferers and their families that I joined the CPSF. It is because I want you to know, YOU ARE NOT ALONE!