not alone!
today God is whispering to me...'you're not alone...'
our disease is rare, and outside of this group i've never met someone who has it, let alone knew what it was. i'm sitting at panera right now and there's 3 women at a table next to me, planning some kind of business meal. one of them is a sweet looking woman with an enormous laugh that's echoing in the restaurant. i couldn't hear much, but i overheard her talking to her friends about...her upcoming doctor's appointment, her skin, her elbows/shoulders/and something else, autoimmune disease, steroids, and plaquenil, the next steps, etc. i'm sure she could have any number of things, but for this moment i'm pretending it's the exact same thing as me...dermatomyositis
whatever is ailing this woman, she has sure discovered the secret of handling what life throws at her well. her smile is radiant. she has spread joy to me this evening :)
in a period of this journey when it feels like everyone forgets i have a disease and what it's done to me already, it's nice to look over and see a "normal looking" woman that no one would ever guess anything is wrong with her, and understand a little bit what she is probably going through...and know that she would understand me too<3
our disease is rare, and outside of this group i've never met someone who has it, let alone knew what it was. i'm sitting at panera right now and there's 3 women at a table next to me, planning some kind of business meal. one of them is a sweet looking woman with an enormous laugh that's echoing in the restaurant. i couldn't hear much, but i overheard her talking to her friends about...her upcoming doctor's appointment, her skin, her elbows/shoulders/and something else, autoimmune disease, steroids, and plaquenil, the next steps, etc. i'm sure she could have any number of things, but for this moment i'm pretending it's the exact same thing as me...dermatomyositis
whatever is ailing this woman, she has sure discovered the secret of handling what life throws at her well. her smile is radiant. she has spread joy to me this evening :)
in a period of this journey when it feels like everyone forgets i have a disease and what it's done to me already, it's nice to look over and see a "normal looking" woman that no one would ever guess anything is wrong with her, and understand a little bit what she is probably going through...and know that she would understand me too<3
Replies
Joy, you are not alone... I totally understand. I do feel alone at times, but i am only alone it space, i know people are thinking about me, and sometimes they are afraid to ask or don\'t know what to say.
I focus for my self on being a triumphant survivor. I will over come this and be a modle for others managing health issues or auto immune diseases. I am a nurse and i know how bad it can get and i am so grateful to have my mind, my body with me to challenge and strengthen, and to not look maimed. I have taken care of folks with those issues, and this i can handle. I can sit at my desk and give strength and support to others. I can communicate well, i can rise above this.
For me it is all about attitude. I willingly say i can\'t do that. When someone notices i don\'t walk just right at the grocery store, i say, Oh yeah i have a muscle disease, there are some things i can\'t do, but i can do this better than i did last month, or last year.
You can triumph too!!! \"Your story has not been written yet, and you get to write it\" This quote from Ann Kaiser Stearns is one i remember whenever i am down. She is a motivational speaker on loss. You can U-tube her. She has books too. I just love her style and perspective. I need it some times too.
May god carry you, hold you and heal you,
Shawna
thanks for your encouraging words!! i agree that attitude is everything. i have always been known as a positive, joyful person and i want people to see the consistency-that i am still that way even in THIS! because of Jesus :)
thank you for always inspiring me and making me smile!! you are wonderful!
Beautiful! im glad to see that im not alone :(