Saturday, February 15, 2014
I had such a great time. Thank you to everyone who came out and supported us by volunteering, attending, playing. It was fun and overwhelming. I'm still recovering, my Myasthenia Gravis flared and I caught a bug so I am resting. For now...enjoy the pictures!
Sunday, February 2, 2014
Oh how many times have i heard those words uttered? Way too many to count... or you sound great, or "that's a handicapped spot!"...really? I didn't realize that when i put my placard up. Like i want to use the spot. Like i want to HAVE to use the spot. My entire life, I have struggled with the proper response to compliments. "Did I sound appreciative?" "I hope my thank you didn't sound egotistical." But now, with an autoimmune disease, I have no idea how to respond. Of course the first two words are easy...a simple "thank you." But then my mind starts going...do I explain that it took hours of rest before i had enough energy to leave the house? Do I go into the intricate details of how i had to instruct my color blind husband where to find my outfit because I was too weak to go to get it. Do i let them know if I'm still in an hour i might look drunk... But I'm not, it's just my stupid illness. My Myasthenia Gravis? People, most people, don't want to hear all that. So, I usually just say "thank you" and smile my crooked smile. Then i sit and worry... do they think I'm not really sick? Was that a compliment or sarcasm? I don't want these thoughts in my head but there they are. Front and center. Most people, unless they've seen me during my many hospital stays or when I'm having a flare at home see the horrible disease this is too live with. I hide on those days. Somethings I can't hide...i can't hide my weight gain or bloated face from the prednisone. I can't hide my left foot dragging. I can't hide my eye when it starts to droop but I do try to hide a lot. That's what was on my mind today. I hope my post helps others not feel so alone.
Thursday, January 30, 2014
Hello friends and strangers, I'm writing this early morning (2:15am) to be precise to address something that was on my mind. Over the 5 years I've been dealing with this pesky illness not many can pronounce I have learned a lot. For instance, I've learned that not only are each of our disease courses different, each Dr. has his/her particular treatment plan. I've learned that the city or state you live in can determine not only how you are treated but if you are treated. It's true! I have had friends choking, unable to stand or swallow sent home simply because the area they live in doesn't know how to treat myasthenia. I've learned that relying on others for assistance is no longer a choice but a neccessity (very difficult for someone with a type A personality). I've learned that in order to say yes to one person or activity,I have to say no to another. This has also taught me that saying no is a lot easier than I thought it would be. Lastly, I've learned that some of the most important people in my life are people I've never had the chance to meet face to face. I hope while you are on your journey you are able to learn something too. If you do, please share in the comments section. Jen