- October 2008 - Geisinger Clinic, McElHatten, PA
- January 2009 - Lock Haven Hospital, Lock Haven, PA.
- February 2009 - Holy Spirit Hospital, Camp Hill, PA.
After being told time and time again that something is found, and then going to get further help and evaluation and being told that there's nothing wrong, I began to feel hopeless...lost...confused, and downright let down by the medical profession. I was exhausted and worn out and tired of trying, I thought I would just have to live with the pains - so that's what I did. I avoided the Dr's for months, until October 2009.
- October 2009 - Carlisle Regional Med Center, Carlisle, PA
- April 2010 - Holy Spirit Hospital, Camp Hill, PA
To make a horrendously long story a lot shorter, from April - September 2010, I was seen by 13 different specialists, diagnosed with Lyme Disease, told I was severely depressed (to which I replied "the only thing depressing me is the lack of knowledge with so many highly commended physicians"), diagnosed with Psuedo Tumor Cerebri (thanks to the Prednisone - we'll touch on that later), and also developed a wonderful sunlight/fluorescent lighting sensitivity, which made it very difficult for me to barely function, let alone enjoy anything. To be honest, I felt like a freak...I was so completely exhausted and distraught, and even with Medical insurance, over $2000.00 in debt in medical copays, etc. I know, I know, $2000.00 doesn't seem like a lot...but when you are on short term disability and you have mouths to feed, and a roof to supply, its like a mountain on top of your shoulders (painful, aching shoulders by the way).
- November 2010 - Hershey Medical Center, Hershey PA
I returned to work full time in December 2010...I tried so hard to do my best, but struggled with every day normal activities that I used to be able to do at the snap of a finger. I developed brain fog - I couldn't think simple words through in a conversation - I was in so much pain, throughout my whole body, that I used all vacation, pto and flex time I was given in 6 months...plus, FMLA. Finally, this May 2011, my body had had it with me...I crashed, hard. My face started to swell again, my eyes blurred, the neck pain was too much to bear and I just couldn't do it anymore. At this point, I'm back on short term disability - trying to figure out how to handle this disease, this life I was given...and still keep my kids, my husband, my family, my employer, my friends all happy. To be honest, I'm pretty much lost at this point. Below is some information regarding Sjogren's, Pseudo Tumor Cerebri, and some other topics I touched on. I've also uploaded some (embarrassing) photos of the changes that Sjogren's has made to my face, my neck, my eyes...and what happens when I over-do it, or go in the sunlight/fluorescent lighting too long. If I have to be at home, stuck in the house missing out on vacations and celebrations and every day life, I figure I might as well try to educate some people and share my story, in hopes that if someone else is going through something similar, they become their best advocate. Knowledge is power, and even though this disease is ever-evolving, there is still plenty of research that can be done and needs to be done. Please, share with your friends, family, whoever - and feel free to share your comments..thoughts..concerns. :o)
Me, 2 years ago. No swelling, feeling good. It lasted 1 day.
Right after recovering from Gallbladder surgery. I felt like I could live. I was still in pain, but nothing like what was yet to come.
Although these pictures are seriously, down right embarrassing, I felt like I needed to share them with everyone. Even though you may not think they are that bad, I am so incredibly ashamed to leave the house (when I can even tolerate it) because of how I used to look, and how I look now, not to mention the fatigue associated with doing ANYTHING. Sjogren's is a horrible disease, and I hope that you will take the time to learn about it, and educate those around you as well. Thanks for reading my first blog. :o)