Monday, June 29, 2009

Am I a horrible person?

That i want a normal day. I want a day without worrying about paying the bills or getting medications. A day with no side effects from multiple strokes or from medication. Am I a horrible person because there are days I would do almost ANYTHING to have our life back? To have the man I married, my best friend back? Most people do not understand what it is like to be us. Ron looks healthy so people just assume he is fine..all better, right? Well, those people don't see him stumble walking to the kitchen or be unable to pick up something due to his lack of coordination in his hands. They don't watch the little changes each day in a man they knew better than themselves. They haven't seen him deteriorate as his brain is being killed little by little by these strokes. The official count as it stands now is 23. They will never have an accurate count due to the small size of several of them. We will most likely never know what caused this. He will never be cured because their is none. This disease will kill him, its just a matter of time and the quality of life he will have. How shitty is that? We will be 30 this year...thats all..30...and Ron may never get to be a fireman again. I will continue to be more his nurse and less his wife. So am i a horrible person because i don't want this life? I don't think I am. I look back at the beginning of this roller coaster to hell, and I think damn..I am pretty bad ass. I have gone above and beyond my duties as a wife, but not because i have to...because I vowed thru sickness and health and I meant it. I can definitely sympathize with spouses who have left because of this disease. There is so much that the doctor's just don't understand. how can you expect a layperson? One of the hardest things for me are the mood swings. Ron has no filter to his attitude, so in turn...life around these parts isn't always pleasant. The toughest part is, he doesn't even realize he is doing it. We have both lived in this bubble of denial. I have come to grips with this more than he has. We have decent days and really bad ones, not really much in between. I don't take care of myself like I should. I can admit that, but i just don't always have the time to care about myself.

I am very thankful for my friends. The people who actually try to understand what it is like to live this life. The true friends who try to make me laugh and who love me for who I am. And the friends who treat Ron like a person...a real one..not a disease or a freak. The friends who get the weird little quirks of mine..and love me more because of them. I have always been a pretty solitary person, too afraid of getting hurt to let people in. However, recently i have realized that i need people who love me in my life to help me on the days i am not quite strong enough or can't quite manage.

I am reading the blog Ii wrote when Ron got sick. It brings back so much. i can still feel every emotion and fear i was feeling when i wrote those words. I have learned to use blogging or whatever has a type of therapy. A way to express things that i am not always comfortable expressing. So thank you to any one who takes the time to read my ramblings.

1 comment:

Lew said...

Hi Amanda.
My name is Lew Newmark, and just over a year ago, I was diagnosed with Churg Strauss Syndrome. This was a disease I had never heard of before, and I have had to learn and adjust with the disease. To answer the question of your post...no you are not a horrible person, and I know exactly how you feel. I am married, I have a grown daughter and my life has certainly changed since my diagnosis last year. I have my own blog called " My Domestic Life, and it focuses on my everyday life and of course Churg Strauss. I will be posting this morning about your blog. My blog's address is www.mlcss.com.

Please come by my blog whenever you like, I'm sure you will find it of interest and maybe even find a laugh or chuckle there also.

Amanda, you hang in there okay. I know that it is tough sometimes to deal with all of this, but there are good times to come, it's just a matter of finding the silver lining under all the garbage...:)

Lew Newmark