Livin' a Little, Learnin' a Little
I've had an amazing weekend. Just amazing :-)
Someday last week I learned my friend Scarlett who has CF is working on getting LISTED! I hope her wait for the new lungs is not too long and that the surgery goes well!!!
Friday I learned a secret. A special secret that made me very happy. I can't tell, but someday I will, and you'll see why it made me so happy. I'm now working on secret things because of this secret. :-)
Friday night I went dancing - which is always amazing. I cried at one point watching everyone dancing. It was overwhelming because I never know how long I'm going to be able to dance. Honestly, I was jealous of all the healthy people on the dance floor. I did well for me. I really love my dancing friends. They are the most wonderful people. Even when I don't feel like dancing they make going to UWMBDA so worth it :-)
Late Friday night I got home and my parents were at my place - my parents and SNOWBALL their dog. I love Snowball. He's amazing. haha. I talked with them for awhile and then went to bed.
Saturday morning I got up early and went to the train show with my dad. I ran into a kid I went to high school with (and elementary and middle school) but was never friends with. AWKWARD. But the rest of the show was fun! Dad bought track and a couple trains. I am proud to say that I know the difference in the scales - it's really dorky, but I've learned over the years from going to train shows with Dad. I had a ton of fun. I watched the little kids - and this brings me to an issue I'm having.
I want kids - or a kid. I know I'm probably never going to have kids of my own, and that just kills me. I know I probably can't get pregnant (and if I can, I really, really shouldn't). And I probably can't adopt, either. Even if I ever get married (a thing I've pretty much almost given up on, judging from how my other relationships have gone), no judge likes to give a baby to a dying mother. A dying father isn't so bad, but a dying mother is bad. And they don't let adoption happen period post-transplant. *le sigh* I love little kids, and I know I'm never going to be an aunt either - unless my imaginary husband (wait... "for-ever fiancé") has siblings with children. I know my brother will never have children. The thought makes me laugh. I want my own kids.
Saturday afternoon I had dance practice - fun! We foxtroted for two hours. It was dance practice :-)
Saturday after practice, Mom and I tried to change my port needle. I have an Infuse-a-port (portacath) and the needle needed to be changed. I tried to get it myself (as I had tired and succeeded for the first time the weekend before), but missed twice. Then Mom tried and she missed and then was scared of hurting me anymore (it really does hurt, but it's no huge deal). So we had to go to the ER. Right. Two hour wait in the ER for the intravenous team to come down b/c none of the nurses in the ER wanted to try. *le sigh*. The IV team nurse was AMAZING. I know I use that word a lot, but she was amazing. She taught me how to do it - FINALLY - I've only been asking them for 8 months to get someone to teach me how. You have to twist the needle as you push it in so it doesn't slide off the top of the port. Now I know how - and she basically emptied the supply room into a huge bag for me. She was great!!!
Not that spending hours in the ER was fun, but the outcome was good. And last night, I slept with out my O2!!!!! NO O2!!! NONE!!!! I feel amazing (there's that word again...) and I just want to jump around and play with little kids I feel so great!!!
That was my weekend. Today I slept about 16 hours and did IVs and ate during the other hours.
I need to go see if I have any acceptable yarn... I should, I have a ton.
Someday last week I learned my friend Scarlett who has CF is working on getting LISTED! I hope her wait for the new lungs is not too long and that the surgery goes well!!!
Friday I learned a secret. A special secret that made me very happy. I can't tell, but someday I will, and you'll see why it made me so happy. I'm now working on secret things because of this secret. :-)
Friday night I went dancing - which is always amazing. I cried at one point watching everyone dancing. It was overwhelming because I never know how long I'm going to be able to dance. Honestly, I was jealous of all the healthy people on the dance floor. I did well for me. I really love my dancing friends. They are the most wonderful people. Even when I don't feel like dancing they make going to UWMBDA so worth it :-)
Late Friday night I got home and my parents were at my place - my parents and SNOWBALL their dog. I love Snowball. He's amazing. haha. I talked with them for awhile and then went to bed.
Saturday morning I got up early and went to the train show with my dad. I ran into a kid I went to high school with (and elementary and middle school) but was never friends with. AWKWARD. But the rest of the show was fun! Dad bought track and a couple trains. I am proud to say that I know the difference in the scales - it's really dorky, but I've learned over the years from going to train shows with Dad. I had a ton of fun. I watched the little kids - and this brings me to an issue I'm having.
I want kids - or a kid. I know I'm probably never going to have kids of my own, and that just kills me. I know I probably can't get pregnant (and if I can, I really, really shouldn't). And I probably can't adopt, either. Even if I ever get married (a thing I've pretty much almost given up on, judging from how my other relationships have gone), no judge likes to give a baby to a dying mother. A dying father isn't so bad, but a dying mother is bad. And they don't let adoption happen period post-transplant. *le sigh* I love little kids, and I know I'm never going to be an aunt either - unless my imaginary husband (wait... "for-ever fiancé") has siblings with children. I know my brother will never have children. The thought makes me laugh. I want my own kids.
Saturday afternoon I had dance practice - fun! We foxtroted for two hours. It was dance practice :-)
Saturday after practice, Mom and I tried to change my port needle. I have an Infuse-a-port (portacath) and the needle needed to be changed. I tried to get it myself (as I had tired and succeeded for the first time the weekend before), but missed twice. Then Mom tried and she missed and then was scared of hurting me anymore (it really does hurt, but it's no huge deal). So we had to go to the ER. Right. Two hour wait in the ER for the intravenous team to come down b/c none of the nurses in the ER wanted to try. *le sigh*. The IV team nurse was AMAZING. I know I use that word a lot, but she was amazing. She taught me how to do it - FINALLY - I've only been asking them for 8 months to get someone to teach me how. You have to twist the needle as you push it in so it doesn't slide off the top of the port. Now I know how - and she basically emptied the supply room into a huge bag for me. She was great!!!
Not that spending hours in the ER was fun, but the outcome was good. And last night, I slept with out my O2!!!!! NO O2!!! NONE!!!! I feel amazing (there's that word again...) and I just want to jump around and play with little kids I feel so great!!!
That was my weekend. Today I slept about 16 hours and did IVs and ate during the other hours.
I need to go see if I have any acceptable yarn... I should, I have a ton.
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