Learning To Live

I have cystic fibrosis.  I have other health problems, too, but CF is the biggie.  It's the one my parents stay awake at night worrying about.  No one worries because I have fibromyalgia or because I have endometriosis.  I know my parents are concerned and sympathetic if I am having symptoms, but it doesn't keep them awake at night.  My CF (sometimes called 65 Roses by children) is currently fairly well controlled thanks to the Mannitol - my miracle.  My parents and I are sleeping better at night; they aren't up worrying and I'm sleeping soundly with my O2 taped to my face - my second miracle.  I couldn't be happier with the way the Mannitol and now the oxygen at night have helped me.  They have allowed me to pursue a dream - something I thought I might never do because of my cystic fibrosis.  I am dancing with 65 Roses.  This story goes all the way back to September, when I lost my babysitting job.  It wasn't my fault - the chi...

I think I have determined my problem, but for the life of me I cannot come up with a solution.  I want to be the best.  At everything.  My problem is I am too good at too many things - and yes, that is a very arrogant statement.  But if I do something I am going to be good at it; that is the way my life has gone - it's who I am.  In high school, if I were a member of something, I had to be the best and/or the leader.  Foresics team captain, band section leader, president of the Spanish club, etc.  If I did it, I wanted awesomeness from myself.  Not to mention I had to be awesome academically.  And I tried the same pattern in college, but I got too sick to continue that.  So I lapsed into being the best at the things I could still do - the best knitter/quilter/crafter, the best sleeper, and the best patient in the hospital.  That last one is sort of a joke.  I knew how to get what I needed, but the staff would certainly ...

This is what swinging must feel like, but without all that icky STD crap. So many partners, so little time. We don't discriminate, as long as you're willing to jump on the dance floor, aw, shit. Now my metaphor is ruined. Well, I warned you. I stayed up until the very last few minutes of UWMBDA tonight. Google it, it'll be there. I'm a ballroom nut. Last semester didn't go so well with the endometriosis killing my party. I happily sat at the table and watched everyone else dance, convinced I would never join in again. But tonight, my friends, I danced and danced and danced. And once again, my feet gave out before my lungs. I gave hugs to so many people - almost all of my favorite people in the world were there - and none of the ones I hate! It was a FABULOUS kick off dance - especially if turn out stays high. I don't know where we'll be dancing - maybe in the streets, but we'll be dancing. But the asphalt is icky for out precious dance shoes...

Look at cute photos of my dog. And now I will talk about today. Today was my first intermediate dance class with the new dance team - and it's pretty much my favorite thing ever. It was a three hour class, and while I only made it through 2.5 hours and discovered I have no core strength, it was WONDERFUL. We covered the ENTIRE basics of waltz in ONE HOUR - not one semester - ONE HOUR. This is definitely my speed. I didn't feel out of place or that I'll have to work hard to keep up - it's just so unbelievably beyond perfect for me. The rest of the day I spent sleeping. I think dancing last night wore me out... and I have plans tomorrow evening which should be low-key, and Thursday's plans are low-key, and Friday is optional and weather related. Saturday is less optional and dancing and Sunday is lots of dancing. And then I will start all over on Monday. Either this team will keep my lungs in shape and keep me healthy, or it will kill me :-) We'll find out...

I had a meeting at the CF Foundation, and they offered me a great volunteer position. More about that later. Went to UWMBDA kick off (the social ballroom club on campus) - and like always, had a great time! Except for one thing - that part where I nearly had a nervous breakdown and then was jumping up and down and screaming, but more about that later. Quote of the evening, "Nothing goes better with sleaze than sleaze." Said by a pretty creepy guy himself. Oh the joys of being a good person. I'm exhausted and plan on writing something worthwhile tomorrow at my parents' place. So The END. P.S. UWMBDA owes Sam and me a BIG thank you for protecting the young females that were there tonight. You're welcome. It's hard being a good person. P.P.S. Thank you to all my friends who were there tonight. Thank you to everyone who said I looked good health-wise, because this is the best I've felt in years. I felt this energetic when I first came to college - but ...

I have to have TWO surgeries now this summer/early fall. Sinuses and Wisdom Teeth. Not sure how all of this is going to go, or how it will affect the dancing. *le sigh*

*I will remember the great quote from the wise Winnie the Pooh: "You're braver than you believe, stronger than you seem, and smarter than you think." *I will not let a mean man discourage me from being wonderful. *I will be strong. *I will be brave and courageous. *I will conduct myself with grace and poise. *I will not let grace and poise prevent me from being bouncy and silly because I am all of those. *I will dance for my lungs, for my friends, for my family, for anyone who loves me. *I will dance for myself. *I will dance.

Here is what I wrote in an email, and I'm posting it here because I feel so strongly about it: Yes I am still upset. I feel betrayed. I feel you are supporting him. I feel not saying anything to him is letting his behavior slide and letting him continue to act the way he does - which is not an acceptable way to treat people. That's the whole reason I emailed what he wrote to me to the whole team - I don't believe what he said should ever be said by one human being to another. His words were hurtful and just plain mean. I still doubt myself when I think about what he and Gwen wrote to me - and I don't even want to know what Josh and DeAnna have said. So yes, my friends staying on the team bothers me some - taking privates with Dakota bothers me a lot because anyone who can create that much self-doubt in a person (especially in a person like me who usually doesn't care what others think) should not be tolerated. Dakota made me doubt my dance abilities when he r...

This may be volume three or four of the "You don't have to fix me" series, but let's just call it number two. The other day I ranted about some friends I've barely seen since I came home from Europe - and I was indicating one person in particular, and she knew it. Today she invited me to dinner on Thursday, and I accepted. Then I read her writings online and she wrote that being my friend felt like a burden. She said that we don't agree - and I am perfectly happy not agreeing with everyone - and that this last incident was the last straw (um, I guess the last incident would be the me feeling betrayed because I see my friends on the dance team staying with the dance team as betraying me... ). You know what... this is going to piss her off, but I don't care. This is what she said, "My friend's birthday was last week. I feel like I have done more, gone to see her at least. But the thing is we are not exactly on the same terms we once were. Our ...

Sometimes I look at my dance bag sitting between my two stools at the counter and I want to put it in the closet. I put things in the closet when I know I'm not going to use them for a while. Things in the closet stay in the closet. What I'm saying is, I've had the urge to hang my dance shoes up for good. I'm doing pretty good this summer. My lungs are holding on - and I'm hoping they'll make it until the 18th when I plan to start my pre-surgery IVs. Yes, I'm more active because it is summer and I will need something to keep me busy this winter, but why can't it be watching movies and doing projects like I used to do? I have this feeling that I'm not that good of a dancer, anyways, so I might as well quit while I'm ahead. I also feel like I want quitting to be my decision - a decision not based on my health. I know that when I went to the one dance I attended this summer I had a ton of fun - I loved dancing again, but I'm so nervous abo...

My heart is broken. I was in love with the DanceSport team, and my heart was stomped on and thrown aside. Not to mention I'm not dancing this summer except for UWMBDA - so I don't have my dancing 3 times a week to get me out of the house - to keep me exercising, to keep me a little more healthy. I didn't just lose some dancing - I lost pretty much my entire life. I keep having the urge to move in with my parents for the summer because when I'm at their place I'm not reminded as often that my life is over. Every time I am reminded that I am not dancing my heart breaks. This afternoon I was reminded that the team is still having Tuesday practices - and it broke my heart. I want to be dancing. I want to be with those people. Then later my friend told me that she and another team member are starting private lessons next week - and I almost started to cry. Then she told me two of my other favorite people on the team might join her and the guy, but she didn't...

Let's talk about these things in reverse order. I realized I was still depressed. I'm not the type of person who cries very often. I know that I'm having problems when I cry for stupid reasons. We upped my dose of my depression med, and I'm doing much better - so far. I was with my family over the weekend, and that always makes me feel better. We'll have to see how I'm doing by the end of this week to see if the meds are helping. I have only had to take small naps or no naps and I've been able to get a little done today - like the dishes, and unpacking a little. Hopefully I will be able to continue getting a little done every day - and then someday it will all be done. (insert insane laugh here because it will never be all done because I am so good at making a mess). I want to dance. I watched all the So You Think You Can Dance I missed while I was in Europe/busy before Europe... and I want to dance like that. I decided that if they get that pill t...

The dancing, that I'm so passionate about, is coming crashing down around me. I have been kicked out of the dance studio b/c I had some ideas for change. I sent an email to my captain (I'm vice-captain) criticizing our coach and the way things currently are on the team. I guess she forwarded it to him, because he then banned me from the studio. He has no power to remove me from the team, and it'd be interesting to stay on the team and not dance in the studio just to spite him, but it'd be a waste of time and money. Too bad the new team captain is a puppet for the coach. I liked our other team captain - the one who listened to members and tried to help everyone. This has made me almost never want to dance on a team again. And I'm afraid to show up anywhere in town to dance because I'm the new dance world Bitch. I never intended this to happen - I just tried to show how the team was flawed in the way it was working because we have so many members who are new...

Tonight I had a splendid bubble bath and a good political conversation. We'll leave it up to you to decide whether they were at the same or different times. I feel really good after my bubble bath. I got all the salt off my skin from being outside so much. One good thing about the salt loss that occurs in CF is it ends up on my skin and then acts as an awesome exfoliant. My skin is all soft and silky and I love it. I also found a website - the Sundance Channel - with insect porn by Isabella Rosalini. I found the like at http://formerlyfun.blogspot.com . I know I linked that in my last post too, but she has some really great stuff. You can find the insect link there. It's probably easier than me looking it up again. I feel really good with my silky skin and my self-esteem boost. Yesterday I was made the bad guy in a nasty situation where the guy cheated on his girlfriend with me - and she thinks it's my fault. She blamed everything on me, and wouldn't listen to ...

Sometimes I don't like when people ask me how I am. Not the people who know me really well and know about my CF - they actually care and I feel comfortable saying, "Well I was just in the hospital and I feel really shitty," or "Maybe I'll have to have IVs soon," or my favorite, "Well, I'm alive." It's the casual friends who don't really get my CF that I have a hard time answering that question for. I say, "I'm fine," "I'm okay," or "I'm good." And no matter how I feel I may give you any of those three answers. So usually it doesn't matter when acquaintances ask, because I don't really give a real answer. But today? Today, you can go ahead and ask because I am Fan-Fucking-Tastic!!! Today? How was my day? Fucking Fabulous. I rolled out of bed this morning later than I had hoped, but I got up, and I showered. Those two things don't usually ever happen in the same day - the get...

I'm eating goldfish crackers and peanut butter - it has become my staple meal. I just don't feel like eating anything else and I know I'm losing weight and they are going to yell like crazy at me at the hospital - hopefully the words "feeding tube" will not come up because I am not that thin yet. I know I guy who is 38 (I thought he was my age, whoops!) who has CF, and to the best of my knowledge doesn't have a feeding tube. Okay I didn't word that right - he is the skinniest person I know - which doesn't help lung function - it hurts it, and he doesn't have a feeding tube. So hopefully they won't threaten me with one yet. Goldfish and peanut butter. There is something comforting in them - maybe because my mom used to feed them to me all the time when I was a little kid. Today has sucked. Royally. I went to dance practice, and there weren't many people there and Coach asked if my boyfriend was going to show up. And I looked at him l...

It's a bad day - and it's only 12:06. I've been up since 10. Today I'm depressed and don't want to go anywhere or do anything but lay in bed and sleep or watch TV. At least I have the energy to watch TV. I have these hopeless feelings again. I can't make them go away. Just when I think my med is working I get these feelings again. My brain is sick and it has taken all of me with it. I have to go to dance practice. You have no idea how badly I want to stay home. I want to curl up and not deal with anyone for at least a couple days. I also don't want to go to the dance this evening because the people who keep me going and are my solid pillars won't be there. I won't have any pillars to lean on and it's scaring the crap out of me. Somewhere around here is a piece I wrote after the last funeral I went to. I was working the table at the dance and I wrote it. Now if I could just find it, I would type it up and post it here. I found it, so her...

So this Great Strides thing always picks me up every year - it reminds me that people care, blah blah blah, but THIS year. THIS year I feel LOVED. Very very loved by my dance family. My dance family - they are family to me, the people I am closest to and see most often in this town. So, one of the members of this dance family convinced the UWMBDA council (which I'm a member of, I just can't make the meetings b/c they are scheduled on Sundays between 2-4 and my nurse comes then) to hold a benefit for CF. They did this without me knowing and yesterday Brent surprised me. It's honestly the nicest thing anyone has ever done for me. It's not that hard since we have weekly dances anyways, and they just decided to donate the proceeds from one of the dances to CF - and now I'm working on getting things to raffle off. Gift certificates and the like. It's that someone thought to do this for me... I feel so loved. I found this out, and then right away had to leave ...

Depression is real. If you have ever doubted its existence you should see me. It's so fucking real. Depression hurts. A terrible hurt that you can't make go away no matter what you do. Sometimes, friends and family are the best things in the world - and that includes the internet family. They rocked my little world this morning, although everything made me cry. Baby Steps. I just need Baby Steps. Watch What About Bob? if you have any doubts about that. I like baby polar bears. They made me almost smile today - which is better than crying, so I plan on watching many a baby polar bear video in the next few days, weeks, months. However long it takes me to get better. I really want to get better. I want to get over this depression more than I've ever wanted anything in the world. I want to be out having fun with my friends and not sitting at home crying and I want to be able to get out of bed and shower. Get out of bed and DO ANYTHING. I want to be able to get out of...

Maybe why I haven't been able to stay awake is because I haven't been taking my iron - I swear, I am so stupid sometimes. I am chronically anemic and have no iron stores so if I don't take the iron bad things (like sleeping all day) tend to happen. Hahahaha I hadn't noticed I wasn't taking my iron until my mom asked me if I was - and then I remembered it's in my lunch meds, and no, I haven't been taking them because, WOW, um, that weight loss stuff. So now I am taking my iron again and hopefully the blood flow will return to my body, I will stay awake and be able to keep a body temperature above 50 degrees without being cuddled up in bed. And things are coming together for my costumes for the showcase - I guess I need to try them all on and sew what needs to be sewn, etc, but that would take time and energy - two things I lack. Oh well.