Real Life

Because of the constant pain in my eyes I have had today and some vision issues with my left eye, I should be resting my eyes but feel compelled to write...I may just help that one person! Last night I spoke with a gentleman named Erwin who like me is suffering from Chronic Lyme. He is at least a year ahead in his recovery but gave me hope there is a light at the end of the tunnel. He too spent months in bed, suffered severe lyme arthritis, neck pain as well as headaches and overwhelming fatigue! He struggled with doctors and was told by an infectious disease specialist at UVA it was all in his head and was sent for a psychiatric evaluation...he was out the door before the doctor could finish his sentence! I too had the same experience with not only UVA but Hopkins as well! Two of the best hospitals in the country and not willing to educate themselves or stay up to date on a disease which has become an epidemic! Two hospitals with doctors calling themselves "Lyme Specialist!" To me a LLMD is a doctor who takes the time to educate themselves and stay current with the diseases they are treating! This is unfortunately the scenario and why so many patients are not getting the treatment they need and why they end up with Chronic Lyme! 
In speaking with Erwin, he expressed his frustration with finding a LLMD. We had many stories to compare! Thank goodness he finally found a LLMD and is slowly on the road to recovery. 2 years later he still can only work a half day and naps 3 hours before dinner. He still has severe neck and joint pain and is overcome by the fatigue! He told me about a Lyme support group in Warrenton which meets the 3rd Thursday of each month. As bedridden as I am I feel lucky...he talked about the Lymies who come to the meeting in wheelchairs and walkers, about a 17 year old whose eyes have been so affected he can not be in a room with a light on. He talked about a girl who is now 25  and has had multiple suicide attempts because at 13 she contracted Lyme. But...12 years ago Lyme was still "New" to the medical world and for years this poor girl was told she was "Crazy" and began to feel there was something wrong! Now after all these years she finally has an answer...Lyme! Although never suicidal...for years I have been mocked and made fun of because "There is ALWAYS something wrong with you!"  "You're a hypochondriac!"  NO I am not...I am a person suffering from Chronic Lyme! This is reality...REAL LIFE and from the day I was diagnosed my life will NEVER be the same!


There is so much more I need to share but my eyes are in a lot of pain and I know what will happen if I do not stop...a night full of excrutiating pain and no sleep!