My feelings are that, just so so. I ask myself, have I done all I can do? Things have not went as planned. I believe I have lost faith in the people of my state of Delaware. No matter how much I advocate for Sarcoidosis and its affects on its patient’s that battle it everyday, no one seems to care more than me. I guess because I am literally fighting for my life. Each year my body gets weaker and weaker as more areas of my body are attacked. Especially this year. So I ask people to help with the various tasks to get the word out and to get people registered for the 5k event this weekend coming. My count is menial. I receive updates daily from FSR and they never change. I have invited our States dignitaries and also my medical teams. Invites sent in every means available. No responses except from one, Senator John Carpenter. His team told me that he couldn’t make the event but he would make time for me as soon as everything settled down in D.C. I appreciated that. At least he took the time to reach out. Usually I received a proclamation by this time. None… I am so disappointed in my State. They turn out for cancer all the time. They just had a huge event for autism. I applaud both of those turn outs, but okay my cause matters as well and it is affecting hundreds of people of all ages and nationalities here in this State. We need support. Sarcoidosis is a rare disease that is unknown, incurable, debilitating, underfunded and sometimes deadly. So am I wrong for losing faith? Having invested monies that I don’t truly have to get the word out so that we Sarkies can get help raising awareness and hopefully acquiring donations towards finding a cure; disappointment and hurt is what I feel. Like no one cares if I lived or died.
My muscles are weakening and twitching all the time. I have been dropping things constantly. My muscles feel like they are in a sleep state. That feeling you get when your leg falls asleep after being in a certain position for a long time. That annoying ache that you can’t wait to subside so you can move on. Well that’s not happening. From my neck down, all the muscles are in that sleep state. I feel like crying all the time. When I walk my legs buckle from up under me causing me to fall all the time. I use a walker as it is because of two recent Lacunar strokes. I fear this Sarcoidosis has finally won after 17 1/2 years. HELP!!! Anyone else suffer with this? I made an appointment with my neurologist in two weeks. It’s just lasting to that appointment. HELP!!!