skip to main |
skip to sidebar
I did something earlier this week that I don't think I've ever done before. I ate out for dinner...alone. The husband was taking the daughter to her violin lesson and I decided I wanted pizza. No. I didn't just want pizza. I had an insane craving for pizza. Not gourmet pizza, but good old Mr. Gatti's Pizza.
I try not to do loud restaurants. Mr. Gatti's is loud and has the kind of chaotic noise that makes me so uncomfortable I could cry. However, the craving was strong. The fam doesn't care much for pizza, so I whipped into the parking lot on two wheels and went in before I could change my mind.
The noise was awful even with few people there, but I handled it better than usual. Didn't even put paper in my ears. Nobody looked at me like I had leprosy or pointed or anything. Thought they might ya know....because folks with no dinner partner are suspect of...something...aren't they?
It was actually kinda nice. When I'm with the fam I sometimes feel pressured to talk. I also have to try extra hard to tune out noise and focus...so that I can listen to what they want to say. I just ate my pizza and watched TV or stared out the window. It was quite a good experience. I wouldn't want to eat alone all the time because I like my family and meals out are a great time to visit and touch base.
I did like it well enough that I'll probably do it again sometime though. Nothing socially horrible happened. Nothing happened at all. It was fine. It was more than fine. I guess I thought folks would think I was weird and stare. I imagined a neon sign flashing over my head saying, "Too weird to have family or friends to eat with. Stay back." With the asperger I always FEEL so weird that I think I must LOOK or ACT weird. Guess I don't and that makes me happy.
So sorry! I didn't realize comments weren't enabled. A heartfelt thank you to HottyTotty for going to a lot of trouble to find me and let me know. I am going to publish the comment you left at my other blog here at BFK. Hope that is ok!
I need to vent about a non-fat related issue.
My daughter has a disease called cystic fibrosis. Most people don't know what cystic fibrosis is. I know I'd never heard of it when she was diagnosed. I wondered why the doc got all emotional when he told us the test was positive. CF is a disease that kills somewhat slowly( in most cases). Many years ago kids with CF didn't live long enough to start school. However, due to advances in treatment, many are living long lives with life expectancy now at an average of 37 years old.
Our daughter has been relatively healthy but we fight this disease like crazy. She takes 20 to 25 pills a day, gets 4 to 6 breathing treatments a day(one in the car on the way to school), a "vest" for chest physical therapy, and inhalers. She also gets an annual pic line for two weeks of IV antibiotics. She had a port put in for three months of continuous IV antibiotics to kill a bad bug. They weren't sure 3 months would do it and thought we might have to do six. Thank God we killed it because the port abscessed and had to be taken out.
She goes through a lot. As her parents, we do too. We had to learn to change her port needle. Her skin was red and raw from the Tegaderm so she cried every week when we took the Tegaderm off. After the Tegaderm was off, I held her hands while she cried and her dad with trembling hands shoved the needle into the port site. No daddy should have to shove a needle into his crying daughter's side. It was awful.
I hate this disease. I hate what she has gone through and will go through for the rest of her life. She hates taking pills and getting treatments, but it is what we have to do to keep her healthy and alive. We don't complain. We don't even talk about it much because my husband has a good job and insurance and we feel blessed to have her.
However, just this year our co-pay for just ONE of her meds...Pulmozyme...went from $100 to $200 a month. Sure. We can pay for it, but what I'm angry about is that my husband has worked his butt off to be successful and this is what he gets. He makes too much money for us to qualify for any assistance.
How can an insurance company do this to a family who is trying their hardest to keep a child alive?! I don't see how they can sleep at night. I'm starting to think they'd rather her be dead because they sure are making it hard to keep her alive!
My kid is a vivacious, outgoing, strong person, but at age 13, still trembles and holds mamma's hand when it is time to get blood drawn or get a shot. She no longer wants to take the "happy juice" before she goes into surgery so she cries, her teeth chatter and she clings to me right up until the last minute.
Nobody should have to go through this. No child and no parent. And nobody should have to pay a $200 co-pay to keep their kid alive.
This photo is from a time when she had pneumonia. Like I said, she is an upbeat kid and hard to knock down. This time she was knocked down. She coughed hard and constantly and lost a LOT of weight. For the first time I was afraid she was going to die. The light had gone out of her eyes. She was tired. Thank God she recovered, but a 24 year old down the hall didn't. She died of CF the day we brought our daughter home.
Edit: The reason this is on my mind is that I just found out earlier today that we don't qualify for yet another program. I have a call in to the company that makes Pulmozyme to see if they will help us. We'll see what happens.
I can't imbed the video right now, but I hope you'll go watch it!!!!! It is Susan Boyle appearing on Britain's Got Talent...the equivalent of American Idol.
Click Here: YouTube Video of Underdog Susan Boyle Singing
I'm one of the three people in the USA that doesn't watch American Idol, so maybe moments like this are run of the mill stuff. I wouldn't know. However, I was covered in goose bumps and about to cry as I watched this video.
I'm sure this poor lady has been shredded by cruel folks all her life...over her looks and personality. I know what it feels like to be treated cruelly because the outside package and personality don't quite measure up to society's expectations.
Why is it that people love to shred other people like sharks on a bloody fish for no good reason?! I've never understood that mentality. A victory for one underdog is a victory for all underdogs. That is why I take supreme pleasure in what happened here. I'm hoping and praying that all Susan Boyle's dreams come true!
