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Showing posts from July, 2011

Regrets, I've known a few....

I think for the most part it's safe to say that we all regret something. I regret that I didn't have that dessert...I regret that I had that dessert! ha! Seriously, we do have "things" in our lives that we regret. Maybe it's about education...you regret that you didn't get a certain degree or that you didn't pursue something while you had the chance. You regret that you didn't take that job when you were offered, etc. You regret that when that door was open, you didn't take the chance and walk through it. Living with ankylosing spondylitis causes one to have regrets about--hmmm--different things. Like regretting that you couldn't go to dinner or just didn't feel like "going out" or doing something as simple as sitting outside with your family. Regrets that you couldn't be the mom or wife that you REALLY want to be. Regrets that you truly can't work anymore-so you feel as if you aren't contributing like you should. You

AS and death/funeral do NOT go together....

One week ago today my step-father passed away...now let me back up a bit..... About a month ago, my step-father was in a terrible car accident. He had to be life-flighted to Atlanta Medical Center. He had basically crushed his leg from the hip to the knee and his foot (same leg). He had surgery and was in ICU. Two days after I had remicade infusion, so for those that have this---I did not go to the hospital for a week. For those that are wondering why, well, I couldn't chance getting sick because my immune system is low--and especially after a treatment. When you walked in to head to the ICU you had to go through the emergency. My mom and sister wanted me to wear a mask from the very first day I was there. But, ok...then I'd get the stares of does she have TB? Or can I get sick if I'm around her. NO! YOU'RE MAKING ME SICK! Didn't really want to explain so I just risked being there. I did skip the 1st few days after my infusion to be safe. We went through ups and dow

Chronic Disease and guilt.....

Everyone at one time feels guilt. Guilt can actually be so bad that it can consume you! Living with a disease such as ankylosing spondylitis I've had feelings of guilt such as feeling as if my family is suffering because I feel bad or can't do certain things. As I sit here and type this, I'm thinking that guilt and sadness for one with a chronic disease almost go hand in hand. I don't think I have feelings of guilt as much as feelings of being sad. Sad that I can't do something. I can separate the two as well...I feel guilty that I wasn't there for my mom when my step-father passed one week ago today. But, that guilt is not because of AS. I was where I needed to be, but at that time, I needed to be 2 people. That's guilt but not A.S related. I feel guilty that I possibly have passed on this terrible disease to my daughter--this is A.S related---and yet at the same time that makes me sad. Gosh--guilt is hard to write on! Maybe it's so hard because it'