Posted by: hockeygrl1 | March 6, 2011

Finally, some understanding

Neon FlowersYesterday was the baby shower for my little cousin Stephanie. Little cousin, hehe, She’s in the 20’s now. Oh how we’ve all aged. All of us little cousins are grown up with careers and kids and spouses. I long for the days of riding the baby bath tub down the stairs at Aunt Barb’s house and sleep overs after Thanksgiving or Christmas. Uncle Mike and my dad, Uncle Glen, always tried to play the tough one, but we knew that us little girl cousins had them wrapped around our little fingers.

It was during this celebration that I had some time to talk to my cousins. One does have some health training, she’s a respiratory therapist, and she knew the pain I’m going through with this pleurisy.  I can’t explain the relief and gratitude I felt that someone knew what I was feeling and knew it wasn’t fake. It’s almost like a validation of what’s going on in my life. She understood, from working with COPD patients, that just moving makes the pain worse and it makes the fatigue worse. Along with her, her sister and mother understand my plight the best. Talking to them is great because there is understanding. They know I’m not complaining about a small illness; it’s serious, and I take serious medications to try to battle it. They understand the exhaustion and maintenance that having a serious illness  takes and I love them for it.

My daughter noticed that I was having a tough week last week as well. Her and a couple of her girlfriends decided to make me cards and have their classmates sign them for me. They are cute. Cassie is quite artistic and I’ll post pictures of them when she gets home from her friends house. (I think they are still in her backpack) They all chipped in and bought me flowers; some nice, happy neon daises. It’s so sweet of those 15-year-old girls to spend their money that way.

I found out another little cousin of mine, also in her 20’s, makes jewelry too. I never knew this until I started to make it. She loves Fire Mountain Gems as well. Who knows, maybe the 2 of us can get something going together; a little jewelry making business. The problem is guessing when I will feel well enough to go out and do the craft shows and stuff. Lupus is very unpredictable in that way. Making plans is hard for me and sticking to them even harder. My personality makes this worse. I need to be on time for everything. Being late is a pet peeve. I also hate having to cancel. I think having lupus is the worst thing for my personality of needing black and white answers; I hate the gray area and now I live in it.

Brandon is getting into the lupus mania as well. You see, since I’ve had so much time at home and since NASCAR has coverage on Thursday – Sunday most weeks, I’ve become a fan. It’s nice because it’s all new to me and the drivers and crew of these teams share a lot of information and they are all on twitter. OK, back to Brandon. Well, he’s taken a few graphic design and web design classes so he can make logo’s and alter pictures using the computer really well. The butterfly picture was changed by him. There is a contest going on by Toyota to design a paint scheme for a race car and you’ll get to spend a day with the driver. I’m hoping they drive my design. It’s going to be a lupus car and you will all have to vote for it so it wins. I’ll let you know when it’s done. I want to use this car to spread awareness and education about lupus. It’s our little way of giving back.

The truth is, I love all my family and friends very much. I know I’m not around much, but rest is the thing I need. I’m also not one for talking on the phone much any more. I don’t know why. I just don’t feel like doing it. I’m a texter! Text me anytime and I’ll answer you when I’m awake.

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