Wednesday, April 30, 2008
Way to stand sideways next to the two smallest people you know, Carla. Way to go. How IS that 6th month of pregnancy???
Posted out of pure love - look at my foot position - that says nothing but "Latin Dancer" And all four of us are in the right spot, doing the right thing, looking the right direction, and IT WAS CAUGHT ON FILM - well not film, digital memory card. So thanks, Dar-Dar for capturing this one. I love it.
Brent took it at a practice. Shortly after this I announced I had to go home before I puked all over my shoes. I had the stomach flu - and I wish you could see the close-up (click and you can!). I am laughing and look so happy (probably because I forgot where we are), and Jason is doing what I like to call the "dancing smile" because it is hard to think and smile at the same time. :-) I also like my feet in this picture - and that no one is together exactly, and from looking at the guys, I have NO idea what they were supposed to be doing. It makes my heart happy. But if you look at Eric, I think THAT'S what the boys were supposed to look like - and even if it's not right, it LOOKS right.
Just when I thought I wasn't handling things well, Dr. Martin reminds me that I am. I'm doing really well for someone who is depressed and trying to get over that. Someone who is facing hospitalization in less than a week - whose parents won't be here to help her get admitted. I'll be doing it all on my own. And maybe that's what I need.
* Paul Simon: You've got to learn how to fall, before you learn to fly.
Paul Simon is a genius. I listen to this song (and all his songs) often.
* Felicity: A few months ago I didn't even know Julie. It's amazing how you can care about someone so much, so quickly.
Felicity is an amazing show. The first season deals with so many of the issues I'm dealing with right now. Not CF, of course - but the personal, things that are going on with my friends issues. It's helping me. And that quote about caring so much so quickly is very true for me. I care about so many people - maybe too many people. I care about all people.
Tuesday, April 29, 2008
This is not possible. This is not happening. Should I tell her? Should I string him up by his toes and castrate him? And he said something about dancesport... and I didn't tell anyone. HOW DOES HE KNOW?!?!?!
...never mind this random rant from Carla. Brought to you by mental confusion and the letter W.
Two years ago I took a case to my hometown police officers, and they told me that "Being creepy isn't a crime." I was pretty devastated because I was sure what had happened to me was a crime, as were the rest of the people in the town. He ended up losing his job and he didn't know it was me (until possibly now, Internet). And I thought I was okay with him just losing his job, because as far as I know he hasn't been able to get another one in the same field he was in, so fine.
Until I was reading these statutes for a friend - to see if her experience was indeed assault - which it was. I was reading one page - the Wisconsin Coalition Against Sexual Assault - and that's the page that really drove home that what he did to me was a crime and the police in my hometown were dead wrong. Way to go, Hometown police.
Now the ironic thing was I was looking at this page, stunned, remembering what happened to me, and I look up at the banner. There are four pictures - the three cliché ones: A farm, a lake, and an overhead view of downtown Milwaukee. It's the fourth photo that nearly knocks me out of my chair. It's the clock out front of Armbruster's Jewlery in my hometown. And it sends me right back to where I grew up.
* Felicity may be one of the best shows ever made. I'm watching season one, and it's just perfect. I know I loved this show in middle school - but I didn't get the lessons in it until now. It's just great.
* Someone suggested this to me:
"To cheer yourself up in the hospital (and entertain us who read your blog), you should play a little game and keep the results tallied on your blog. For example, in my CF hospital there are tons of med students/interns. And many of them are nice looking young men. Maybe you could keep count of how many attractive doctors/interns/male nurses/med students you can get to give you a hug while you're there. You know, hone your flirting skills, make up silly excuses like you have a itch on your back you can't reach, then go in for the hug... I think it would be fun!"
I am usually too busy pissing them off to get a hug - plus the hugs in gown, mask and gloves just aren't fun, haha. Do you think I should try it???
Monday, April 28, 2008
I have learned how I like to be. I have remembered that I like to be the one doing the helping, not the one that needs all this help. But when I need the help - I know who has my back 100%. I have learned how much people - even strangers - can care.
I have learned exactly why I write this blog. I write this blog because somewhere out there is a person who is depressed, or who has CF, or is diabetic, has been victimized, or just feels sad, and somehow my blog will hopefully help them. Maybe it will inspire someone to express him or herself in a healthy way - or at best help them see what therapy and medication has allowed me to become. And when I work through this depression I will be who I was again, but wiser and with more to give.
I have learned that although the depression meds aren't yet helping much, it doesn't mean I have to fall to pieces and hide. I am stronger than that - and this past week was a way for me to prove to myself how strong I am.
I will stick up for myself and whoever else around me is hurt. If you are my friend and you get hurt, please let me know because I will kick some major ass for you. I will be there to hold your hand for whatever you need because sometimes, that's what is best. A hand to hold. Maybe I know that because of all those lonely nights I've been in the hospital just wishing for a hand to hold. I will be that hand for anyone who asks for it - and for some people who don't know they need it yet.
I was reminded "I believe in love surviving death into eternity."
Affirmation by Savage Garden is one of my favorite songs of all time. "I believe in Karma; what you give is what you get returned."
I have remembered that I view my life as meaningful. I view my disease as something I deal with, but is not some tragic malady. I view it as my tool to educate the world. If I can inform one person about cystic fibrosis through this blog, I have done what I wanted. If I can encourage one more person to donate for CF research, I have done what I wanted. If I convince one person to become an organ donor (and make sure you let your family know your wishes) then I have done what I wanted.
If I can help one person who has been victimized to be strong and stand up and speak out then I will have taught someone something. If I can help someone through the process, then I have helped someone. And those are things I really want out of life.
Life is for living. There are hard times and hard situations, but nothing is to big for me to conquer. And if I can help someone learn how to cope with or conquer something in their life, that will be enough for me.
This week I faced a severe amount of self doubt, and right now I am confident again. I am confident I will find the right medication and through therapy I will get over my depression. I had to spend eight months getting over an appendectomy - I can do this, and in a much shorter amount of time.
I can't talk about things. Not here, not yet, maybe not ever. These things that are happening - like the lovely surprise I found this morning. If I ignore everything will it go away??? That hasn't worked so far with the dishes, sadly. But these issues are so much bigger than the dishes.
For the rest of the day I will be trying to ignore the world by hiding in my place. Yes. Bye bye computer.
Sunday, April 27, 2008
Reasons to get out of bed tomorrow: None.
Hours I plan on not being in bed: Not many.
Reasons to get out of bed Tuesday: None.
Hours I plan on being out of bed: About three - IF I go to dance practice. My lungs may not make it that far.
Oh yeah, did I ever mention that stress usually brings on a lung infection? I've had so much stress in the last week I am now in "curl up in a ball and hope to die" mode - and I can feel it in my lungs.
Oh and the crying- all the crying is PERFECT for my sinuses. From all this crying I plan on needing sinus surgery, oh, around August. Somewhere in July I'll stop functioning because of the pain, and then I'll demand surgery - but of course the doc will be booked out for months, and then I will probably make a scene just so they will do my surgery sooner so they don't have to deal with me anymore. I may go and sleep in the ENT waiting room all day, or call the surgery scheduler an obscene number of times during the day. Whatever works.
Here is what Girl wrote about me. - it's the one called "My one and only rant" (she took it down, so don't bother clicking).
I thought I'd share.
Now I'm going to hide from the world because I can't take this anymore.
I've researched statutes and definitions and I think I'm all sexual assaulted out. Right. Dealing with this is exhausting - mainly because I'm largely emotionally involved. Right.
I feel like I'm going to throw up now- it's that upsetting.
I need to avoid the entire world for several months.
Saturday, April 26, 2008
Dude I've got trouble. Lots and lots of trouble.
First, as if you didn't notice, I'm having a bit of trouble with a couple of friends of mine. It mainly has to do with the fact that I can't find a guy who wants to be supportive of my CF - they are all scared as hell (except Chris - from now on in my blog, when I generalize about the male species I am talking about everyone except Chris, and sometimes Dad and Darin because they too are acceptable as male species).
But in reality, Dad and Darin don't count as part of the rest of the male species - Darin is Gay, so therefore he's almost a girl anyways. He's a feminist at heart and knows my CF and what I've been through. Hell, he's had to live alone during high school because my parents had to take care of their dying daughter (I lived, by the way, in case you were wondering). And Dad, he's a Jedi. He is so wise he is no longer part of the common male species. I think he's getting tired of talking to me about 15 times a day, but I need him. I hate to say this, but he's so much better at dealing with my depression than Mom. And I think I'm hurting Mom's feelings because of this, but it's not that I don't want to talk to Mom, because I do - tonight I wanted to tell her about my shiny new shoes, but she was asleep. I can just feel the anger in the air, despite the fact that she lives hours away. Now I'm going to have to deal with an angry mother. Joy of Joys.
And if you would like to know the latest decision - I have decided to keep Girl as a friend - a best friend - because she is so willing to listen to me get upset over and over and we start out angry every time and end up not angry - like all is right with the world. And because of her, Rachel, Ashley and Sarah Lynn I'm going to build an all-female compound and live with the people who really support me. I guess Dad and Darin and Chris could come visit - hell they could live there too, but no other males. I haven't found anyone else willing to deal with my CF - and until that changes, in my mind I am living in sin with my best friends on a compound.
And Boy and I are not friends - maybe someday we'll be friends again, but not now. He has shown no real interest in supporting me and my CF - he says he will "as a friend" but he doesn't get it. He just Doesn't Get It. And I'm tired of people not getting it. I'm not going to settle for anything less then real support - people I can count on when I'm upset because Oscar the dog fell on his face on the sidewalk. If I can call you up and leave you a voice mail about anything then you are my friend.
Tonight I made it to the dance. Someone wise told me I should go and I listened. I didn't dance one dance - not one. When I got there I learned the council had a "situation" to deal with. And as a council member I helped deal with it. But it is no longer a "situation" - it is a "BIG FUCKING DEAL." So much so that I want to MAIM one of the parties involved.
Why don't guys see girls as people. People who have feelings and are not just toys to be pushed around? I am so angry about this situation you have no idea. I can't really talk about it, but if I could there would be no lowercase letters. It would be all uppercase and I would make it a BIG font.
You think I'm angry when I get hurt??? Hurt one of my good friends and see what happens to you. I am VERY over protective of my friends. I was crying tonight because I don't want Boy to hurt Girl and that's why I'm mad they are together. If he hurt me, what's stopping him from hurting her??? And castration with a carrot peeler gets old after awhile. Although I'll never forget the look on THE BASTARD's face when I brought that up in history class.
I got Trouble. Right here in River City. And man do I wish it were just a pool table.
BIG GREEN HARDENED BOOGERS!!!
GEOREGE BUSH IS A DUMBASS WHO ACTUALLY SAID TO THE POPE, "AWESOME SPEECH YOUR HOLINESS!"
See... I can say WHATEVER I WANT. Don't read it if you don't like it.
I, much like Fox News am completely biased and tell things the way I want the world to see them. It's called spin. I spin things my way, and that's how it's done.
Boy sent me an email. I laughed. It said, among other things, "noticed you left practice early today. are you doing okay?" NO I AM NOT OKAY, DAMNIT!!! I am agreeing with my the comments I've received - that friends wouldn't have done this to me. This is my spin, damnit. And I'm going to say whatever I want and it's going to feel AMAZING...
I am not going to try to be friends with Boy. It's my life and hopefully he will stay the fuck away until I say otherwise. Like Billy Joel says, "It's my life, Leave me alone." I'm torn whether or not to try and save a friendship with Girl. I don't understand how she could do this to me, but at the same time I love her to death and don't feel like I can give up her support because I'm so lonely. We got along so well until this. But if she did this, what else will she do to hurt me? Can I really count on her?
And now on to my ode to comments. Here are the favorites of the comments I've received:
"It really is none of my business...I realize this, but neither Girl nor Boy are your friend! Feeling the way that you do you must eliminate negativity from around you so that you can focus on getting/feeling well. You don't need to be hearing about Girl and Boy hanging out! My experience with depression is 1) Meds take a while, and sometimes a little "tweaking" is necessary. 2) One hour at a time will lead to one day at a time until you are ok
3) Have people around you that uplift you instead of cause you saddness...atleast for now....
Again, I repeat, none of my business-don't mean any harm by my words, just hoping my coping might help your coping. "
Thank you... I know my meds need to be turned up a bit. It's a long process and I like the hour by hour thing. It works for me.
From Chris S.
"I agree with anonymous. Friends don't do that kind of stuff to you. I know you know better people and they could be better friends.
I don't think you're controlling. You have some self-respect, unlike other people, and you stick up for yourself. I agree with what you say about demanding what's right for you. You deserve it. Just because others don't have the same self-respect and they don't know what that's like doesn't mean you are controlling. It's the same with you mom. She thinks you're controlling. It's not that. See above.
"Demands of support"?! That's bullshit! Any decent friend would just BE there for you, and you wouldn't have to say anything!
I don't think you should get back together with the bike riding bozo. I don't like him, and I haven't even met him. You can find someone better. He's just not going to respect you.
Gosh, I get so pissed when people treat you like this! WTF is with them! ARG!
And write whatever you want! This is your blog, and no one is forced to read it! "
Do you see why he is one of my favorite people on the planet??? Bike riding Bozo!!! HAHAHAHAHA. I actually laughed! Good for me!
From Chris S. (again)
" RESPECT! That's what it is!
I like to think I'm learning to be a feminist. In our culture, it's HARD not to be sexist, racist, and lots of other -ists. (Disablist?)
Anyway, learning to respect others is hard, and with our culture telling us women are objects and should fit some stupid mold is what makes it different. Women probalby respect other women more than men respect women. One of my favorite bumper stickers says, "Feminism is the radical idea that women are people." People deserve respect!
I respect you. That's why your CF doesn't matter to me. Anyone who gives you some bullshit answer about you CF getting in the way of friendship or more is full of, well, bullshit! ARG!
Okay, I should stop being pissed.
Maybe I'm different because I had a disease at one time. Maybe I see that anyone could suddenly die for no reason. Life is a roll of the dice, and avoiding someone because they think you might die (You might not! They don't know that you will! Nobody does!), is just stupid because ANYONE could up and die any moment.
It's like this episode of the X-Files. This guy could see the future, but he could never do anything about it, so he just sat around doing nothing because it was too depressing. These people who avoid you go around thinking they know what will happen, and they avoid those things. It's a false prognostication.
Okay, I must be in rant mode or something. Sorry!
I really care about you, and there are other people who do too. Part of that is respect. Part of that is your just awesome and fun. I wish more people would just let it be that way!"
These comments are the reason I keep going. Why I don't just curl up in bed and wait to die. These comments remind me who I am and keep living my life as I want to. I am reminded that people love me despite any "flaws" and I am strong and can do whatever I want.
Like say BOOGER!!! BOOGER BOOGER BOOGER!!!
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 like he was crazy, while my heart began to beat out of my chest. We had a few awkward moments and words and I walked away in a complete panic attack. G-R-E-A-T. I don't know who he was implying that I was dating, but the fact that everything is just so screwed up just threw me over the edge.
I couldn't pay attention while dancing, and I was dancing with a pretty good lead- he's really good at swing anyways, and then I got stuck with one of the new members. Usually I am patient and willing to help, but at one point I just lost it and started yelling, "PUT YOUR WEIGHT ON THE ROCKING FOOT!" And he didn't get it and then during a demonstration I almost fell asleep and I couldn't listen and I felt like I wanted to throw up and the "Please let me curl up and die" feeling over came me and I had to leave. I didn't even tell anyone why I was leaving - I just left. And I made it to my car before the tears fell uncontrollably.
Thankfully a good friend sent me a message just as I got home, so I went to spend time with her. I have this horrible problem that I am not good by myself when I'm feeling so depressed, but if I'm in a room with too many people I feel as if they know that I'm paranoid and they are all looking at me. I know this isn't normal and I am crazier than my diagnosis suggests.
Must work on this in therapy. Dr. Martin will know how to fix it. His suggestion for this week was to continue what I was doing, but to stay away from Boy.
He also helped me come up with new, creative ways to eat Goldfish and Peanut Butter - like Goldfish and Peanut Butter in a tortilla. I told you this man is brilliant.
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 here it is:
"I have this one sheet of paper to write down everything I'm feeling.
I went to Troy's visitation ~ they had a wonderful slide show of photos with music. I want that at my funeral. I found this mega church on the west side of Madison, and maybe - if it's not too weird, my funeral could be there.
Kyle was there and he's being admitted as I write this. I know I have a lung infection ~ I feel it, but it would break my heart to have to do IVs again so soon.
Is it bad I'd rather be at home typing and reading Heather's blog than here dealing with UWMBDA and people who don't get me?
At Troy's visitation - talking with Kyle I felt like I always feel when I'm with CFers - I feel like I belong, that finally someone understands.
There are just so many reasons I want to cry - my heart feels so broken. And mostly I'm upset about my own lungs which is horribly selfish."
Those were my thoughts that evening. It turned out I didn't have a lung infection - I was feeling sick because of a thing called Depression. Maybe you've heard of it?
I wrote that before I was able to admit to myself that I was depressed, and all those horrible feelings, well I guess they are still around, but maybe a little less intense.
It's almost getting to the point where I have good days and bad days - but it's more like I have good hours and bad hours. Sitting in the sun, writing in my blog, reading blogs, watching TV - those are good hours. Trying to get out of bed, trying to shower, trying to eat so I don't lose any more weight - those are bad hours. Dealing with people I don't completely trust because there's no way they understand what this depression is like? Bad hours. Hanging out with the wonderful people who support me whether they understand or not? Good hours.
I'm afraid that dance today is going to be bad hours. I don't feel like getting out of a chair and moving from here to the kitchen, let alone getting out of a chair, driving to dance and then actually dancing. Yeah. Friggin. Right.
But I'll go, and if I can't pretend to be happy or I'm so miserable I want to cry, I'll come home and sit in bed and watch movies for the rest of the evening.
God, I really don't want to do this.
Friday, April 25, 2008
Being my friend isn't easy either - are girls (and Chris S.) just better people in general? Is it the motherly-ness that allows them to love me despite being sick? Sarah Lynn put it best "Being your friend doesn't hurt any less." Take it from a girl who knows - we've been friends since kindergarten and she was there through elementary and middle school to tell me to eat my lunch - and she would tell my mom when I wasn't eating my lunch. She's a great best friend. The best best friend.
Everyone but Keaton is allowed to comment here - I already got your opinion and I didn't like it. Let's get some others.
Where I left off was saying that my friend - probably the best one I have right now in this town - told me that she wanted to talk to me about something. The second I read the email that said that I knew what she was going to say, but I was hoping it would be something better like "I'm dying of cancer," or even better, "I'm dying of cancer and sitting here with you Carla is going to kill me." I'm pretty sure I would have gotten over those faster.
So we met at Noodles and she told me - she's dating Boy. So now Girl and Boy are dating. How fucking perfect. I felt completely betrayed - and still sometimes do, like when I think about how when she said that when Boy and I started dating she liked him - and then I realize that she was dating someone else at the time. In my mind, I am the only one allowed to have my cake and eat it too and I guess Girl missed the memo.
Actually, I sat there across from her for quite awhile chewing my mac & cheese. Worst awful moment ever. I wanted to scream and throw things, but at the same time I didn't want to get arrested. I was too upset to talk to her and too upset to go to dance practice. I know this makes me a horrible vice-captain, but I just don't go places when I'm in the middle of the ugly cry.
I ugly cried the whole way home and the whole time I talked to Girl on the phone and the whole time I typed an evil email to Boy. I know I called him a slew of names - none too horrible, just horrible enough.
Girl said that she was happy for us when we dated - even though she liked him, she stepped back (let me remind you she was dating someone else so how was I supposed to know she liked Boy, and I wouldn't really consider dating someone else "stepping back," although that dating ended as a result of photos I posted). This is what I call the, "You are being mad at me irrationally and stop it because I am a better person than you" move. The girl with the severe depression who was dumped because of the incurable disease that is killing her has the right to be mad at you, okay? Thanks.
I can hear the shit I'm going to get for this post already. The next night when I actually talked to boy (well, he talked, I yelled and condescended), he complained about me blogging about all this when he and I were together and told me that he stopped dating me mainly because I'm controlling - and I have "character flaws" - mainly being that I'm stronger and I get what I want. I don't consider them flaws and I will never apologize for being who I am. What I have been through has contributed to my strength and my will to get things done the right way - my way - and I will NEVER apologize for that.
My favorite was his excuse for canceling plans with me so that he could hang out with her - he said he wanted to talk about me. What a classy excuse; I would have just come out and said, "I wanted to jump her and you, not so much Carla," but I guess we're different that way. Two words: Douche. Bag.
So I've been trying to take the high road and be okay with all of this (which makes me wonder if I am more mentally ill than my current diagnosis suggests), mainly for the sake of my friendship with Girl. Yes I feel like she stabbed me in the back, but I don't want to lose her as a friend.
It took me this long to be able to talk about any of this - and that should say something since I'm not afraid to talk about anything.
So my point is, The Terrible Horrible No Good Very Bad Evening was awful. As was the next night with all the yelling and condescending going on, and after all of that I realized I could never be with Boy because he can't handle 1) My CF 2) My depression 3) My "control issues" - you spend five weeks in the hospital where they do nothing but fuck up and see if you don't come away with some "control issues" 4) My strong personality AKA Getting My Way and 5) - my favorite - My demands of support. Because it is unreasonable to ask a friend to come and sit with you when you are lonely and having panic attacks because you are alone. Yes. That sure is being a shitty friend - man! I suck!
But after all that realizing why does it still hurt so much when Girl sends an email that contains the phrase "I'll be back on Sunday and hanging out with Boy, so...."???
I can't stand Boy anymore. I don't know if I'm going to be able to be in the same room as him or look at him, and it bothers me that she's going to hang out with him? I guess I knew that's kinda what "dating" is, but it still hurts. And I think the problem is that I had made these two great friends who I could hang out with frequently - and now that's all fucked up. And they are closer to each other then they are to me and I can't stand that. I'll admit it. I don't want them together because I still want to be friends with both of them. Well maybe not Boy, I haven't decided yet, but I love Girl to death, and her being so close to Boy is hard for me.
I can't stand that people have the gall to tell me that my CF is the reason we can't date. You WUSS! Seriously, are you that selfish??? I get told that I'm pretty, and my personality is fabulous - worth worshiping - and that I'm a great all-around person. When this comes from my friends it is appreciated because sometimes I forget that I am something more then my CF. I am a person. I am not my CF - I just happen to have CF.
I very often get the "you're an awesome person who is very attractive and I'd really like to bang you, but that relationship thing? Not gonna happen here." I've lost count how many times this has happened. I have had two supportive relationships, but they got scared. One got scared when I nearly died - and the other, well he had to ride his bike to New Orleans and needed to screw everyone along the way. Nice guy.
About that guy - the guy who rode the bicycle to New Orleans - people keep asking me if he's back - like we're going to get back together or something. Too bad when we got together at Christmas, as he is helping my load my car for my trip to visit my family he suggests that I should carry a backpacking backpack through Europe. He is there to help me because I can't lift my own suitcase. I turned to him and asked, "Have you MET me?"
That, and the fact that he has a new girlfriend kinda got in the way of us getting back together, but evidently the entire CF group and my therapist were hoping we would. Too bad they had no idea the real reasons he broke up with me.
That was a long tangent.
Oh yes, the "I want to sleep with you but I in no way want to support you and your struggle with your CF except to show up at the hospital." Showing up at the hospital is good - and I will never say no to a visitor - except that one, and he knows who he is. Every time he calls when I'm inpatient I hit the "fuck you button" - also known as Silence. He's only trying to visit so he can later try and guilt me into taking care of him while he's drunk because he "was supportive of me." Another nice guy. Where do I find these guys??? And why do I date them??? And why do they still call me two years later???
I'm waiting for the day when I run into an ex on the street and he will say, "Oh, you're still alive? I figured you would've been dead by now." Because things like that happen to me. And I will be blogging my up-coming hospital stay in FULL COLOR, so no stupid thing will be missed.
What will they screw up this time? I can hardly wait to find out.
And now that I've blogged all this out, I've realized that Girl and Boy deserve each other and I hope they are happy. But they better not fucking forget about me or I will kick some ass. And the condescending will be brought out in full swing - no feeling spared.
Here's the site to donate or to join my team. (It's not too late to join and to do some fund raising of your own! It's easy - ask neighbors, people at work, friends - send out an email - it's great!)
I'm really psyched that it looks like we might make my team goal of $5,000 this year, which would be amazing!!!
I'm so excited to see other people excited about the walk - this winter has been really hard for me health-wise. I was sick from November to February and then FINALLY felt better and my depression escalated to the point where I could no longer do anything or care about anything - so to see other people stepping up to help me meet my Great Strides goal in ways they never have before is brilliant!!!
And yes, I have some level of skepticism about the new drugs coming out (VX-809 - Carla's Drug) because they are still in very early stages. But hopefully the money raised will help make sure those drugs get through. Or if they don't get through, help fix them so that they do. It would be wonderful to see kids with CF never have to stay in the hospital, to never have to do a nebulizer, to see them just be kids.
And for my adults with CF - it'd be great for us too - stopping the decline of our lungs would be an unbelievably great thing. I will always be diabetic and I will always have digestion problems, but keeping my lungs stable (or making them a little better) would be absolutely mind blowingly wonderful.
Here's one of my favorite montages. Think of this kid when you think of whether or not to donate.
Thursday, April 24, 2008
Tonight we talked about pets and many things not related to CF. I learned and realized some things today - besides the fact that I have a migrane right now and need to go take something for it...
On dating- I know what I want, I know what I need, and I'm not going to settle for anything less. I will not put myself in a situation where I have to "take care of" the other person. It would be stressful on me and make my own health worse. I know the kind of support I need in a partner and I'm now willing to wait until I find the right person. I can't "make" the right person. I need to "find" the right person.
Right now I'm in a place where my friends are great and I have enough of them to support me and help me and my family is fantastic. Let's stand up and give them a round of applause - they are that good. And my therapist is amazing. I want to keep seeing him once a week for the rest of my life just because he's a cool guy. I like being able to say whatever I want to say (not like I don't do that here) and have a professional's outlook on the situation. I like his jokes and his comments and he's a fun guy. I always leave there better then when I walked in. I think maybe I need lots of therapy just to get through life. Maybe so I won't be so lonely.
On summer - I love summer. I got sun burned yesterday and it felt so good. Just a little sun burn. Not like I will tan or anything - because I never do, but I know that I got some vitamin D besides that which I took with breakfast in pill form.
In summer my friends are around. This summer is going to be another good one!!! I am already talking to people I have barely (or not at all) seen since fall semester began. It's those hard working people I love to spend time with - and they're just so damn busy during the year!
I'm too sleepy to write anything else.
I need a nap.
Thanks Sarah for getting me addicted to Grey's. OMG.
I have a CF meeting I really want to go to, but I'm so tired and I think I have the stomach flu. We'll see if I make it there.
Wednesday, April 23, 2008
I am incredibly sorry you've been upset lately and believe me, dating is just a massive confluence of crazy for everyone and I can't even imagine having that added dynamic of CF to complicate already difficult relationships. I feel I must comment as someone rather afraid of commitment myself in defense of all of us who aren't as brave or as unabashedly audacious as you when it comes to matters of the future. While certainly many issues come to the surface about what it means to support someone through and through (especially when they are sick or dealing with difficult situations beyond their control), hesitation to commit doesn't (necessarily) mean that someone is unwilling or unable to do so. I mean, it's more or less common knowledge that guys evolve more slowly than women emotionally, but think about it this way- you've been forced to truly become an adult with a very adult perspective on the transience of life in ways these dudes can't even imagine. So not only are you female, more mature, etc., but you're also one of very few people your age who can stand up and say "Hey, I've seen how life can end, I've seen what this means, and this is who I am, this is what I want, and this is how I'm going to lead my life." That's true confidence. True integrity. And TRULY FUCKING TERRIFYING to most people who don't understand what this means. 22-year-old guys don't think about marriage. They don't think about what 3 kegs of beer will mean for their health in 10 years. They just don't. And then there's you- this amazing, brilliant individual with so much to offer to the world and to someone who deserves you- and unfortunately you end up suffering the consequences of these tricky dynamics of love. I guess my point is this: there is fear and loneliness and debilitating sadness that will inevitably come whether we are in love or a relationship or very much alone. Don't waste your time with anger toward people who are afraid of sharing these. It's not that they're douchebags, it's just that they're human. I'm a bit terrified of the future myself, and sometimes this manifests itself by forcing me to push away people I love because I'm scared and uncertain and I don't want them to know this. I've never been forced to view time as you have, and truthfully, I believe this is something most people will never understand unless they share the experience firsthand. In general, we're all sort of ridiculous as a species, but it's delicate, beautiful chances that introduce us to people who will be worth our reevaluation of perspective. We don't know when they'll happen or who they'll bring into our lives (and I could talk about God here, but this is already long), but in the mean time, it doesn't mean that everyone who fails us is worthless. Men suck at commitment (and for the record, a lot of women do too). People gossip, screw up, hurt us. So you haven't found the love of your life. But right now- just right now- learn and love the people in your life the best that you can (and I know you do this) and trust that all that practice at loving can only help you someday when that very special guy walks (or ballroom dances!) into your life and sweeps you off your feet. Why be angry with things or people you can't change? There's nothing wrong with letting someone know that they've hurt you, but if you get in the habit of dedicating too much thought to that hurt, you'll miss out on the things and people who will love you deeply and magnificently in return.
This is long and probably incoherent, but I just wanted to say that I admire you for so many genuine reasons and I know I'm not the only one. I am 100% sure that someday (tomorrow? next year? who knows?) love will treat you well. In the mean time, don't blame guys for being douchebags. So they don't want to get married. Too bad for them. Rejoice in your superior brainpower and move on to things that make YOU happy. When you're happy, others will thrive from it too, and that, really, is the foundation of true love, right?
Love from Boston,
She's so freaking awesome.
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 for the gynecologist. She's one of the few doctors I like - I know with the sticking a spectrum all up in my business and everything, I still like her. That says a lot about her as a person. She listens to my concerns and considers my CF in all situations. And she just listens to me and I love that. God forbid, a doctor who listens. Anyways, we went over all the different options to try to stop this constant bleeding, and she was very positive that we'll find one. And if we don't - I'll have surgery to kill the lining in my uterus and I'll never bleed again - I'll also never be able to have children, but not like it's lookin' real good now anyways.
After the gyno I called my mother and I rambled on about the benefit dance, talking about how I don't go to meetings because that's when my nurse comes so they were able to surprise me. And her response, "So what's your point?"
Me: "Um, that it's cool?"
I was totally feelin' the love, but that's my mother.
On a positive note, I told my dad today and he was excited for me, so that's good.
After I talked to my mom I went to the pharmacy and to Target. Man was I having a GREAT day! I finally felt that maybe the meds are starting to work (and I think they are now that I'm over the trauma of last night), and then I went to meet my friend for dinner... and she had something to tell me. And honestly it was the worst conversation I never wanted to have - I knew what she was going to say.
Now I need to go outside and work on some crap - like seeing when I can fit in going to the hospital for two weeks. ugh. And seeing about a laptop and CF stuff and donations for the big event that I'm pretty excited about but haven't announced here yet.
Tuesday, April 22, 2008
I'll talk about that later. I'm really very excited - in a well, someone cares, way, but right now my soul is crushed and even though it's 7:45 I'm going to bed because I can't take the pain anymore.
I'll write two entries tomorrow - one about the Amazing Day Where I Felt A Little Better Finally and one about the Terrible Horrible No Good Very Bad Evening.
Monday, April 21, 2008
I have very vivid memories of a stripped shit, me wearing clothing that I could never fit in now, my BREATHE bracelet, the tango, and faking Viennese Waltz. And well, of course the Balloon Arch, because that is how he got his nickname. Haha.
* Depression. No one should have to suffer like this. I think I might take all that CF money and put it towards curing mental illness. (just kidding - CF needs the money too. If I beat this mental illness, I would sure as hell like to beat the physical one too!!!)
As I see things: Physical illness - piece of cake! Mental illness - worse than anything else I can think of. And I've had "milder" mental issues. I can't imagine what being Bipolar or Schizophrenic would be like. Maybe I'll become an avid member of AMI (Alliance for the Mentally Ill)
* Everything. Everything bothers me - things that wouldn't normally bother me at ALL bother me. The fact that one of my best friends seems to be helping more people with their problems than me? Bothers me. The fact that two people I know are hanging out/maybe dating when I have nothing invested in that at all? Bothers me. The fact that Oscar the dog just walked by and tripped and fell face first into the grass? Bothers me. Having no candy in the house? Bothers me. The mess on my desk? Bothers me. The fact that I'm alone and relatively bored? Bothers me.
I want things to stop bothering me!!!
* I keep thinking in "blog." I was outside laying in the sun and I noticed that the thoughts in my head were running as if I were typing them here in my blog. That's what I get for updating so much and reading so much Dooce.com.
* Boys. I know I complain about boys a lot, but seriously, they are stupid. I got a great comment on my last post about boys from a CF mom. It made me smile HUGE.
And apparently I looked really great in the photos from showcase because I've had many - much more than a handful of - boys tell me so. And these are boys who I've dated, or almost dated or kinda sorta dated - and all I have to say is WHY CAN'T ANY OF THEM MAKE A COMMITMENT?
Okay I am done.
"For quite awhile during Leta’s first few months, I wasn’t sure what I would be coming home to at the end of a work day. The summer of 2004 was pretty bad, and I tried to be positive and upbeat, but ultimately I learned I couldn’t fix her. I think this is the biggest male-who-is-a-significant-other delusion; that we can somehow fix it. Learning this is fundamental to dealing with a person who suffers from a mental illness. I had to learn to accept and support. This was difficult and something I’m still working on."
It's what her husband said in an interview several years ago, and it really hit home with me because I had a conversation with Boy where he said he "can't fix me." And I pretty much yelled at him, "I never asked you to." Because it really pisses me off when people think that they alone can solve my problems.
I don't want one person to solve my problems. I want someone who will be there while I am solving them. Someone who can make me laugh no matter what. Someone who will watch me fall asleep while we watch a movie.
It takes a village to help me with my depression, and part of that village is the pharmacy where they keep the cool anti-depressants. My parents and brother are helping, my psychologist and my psychiatrist are helping, and so are my friends. But mainly, it's therapy with said psychologist and anti-depressants from said psychiatrist that are helping - or at least starting to help. I am able to say that I stay awake longer during the day. I just have no idea what to do with my day.
But back to the fixing. That also goes for my CF - there is nothing that can fix me, and the best thing anyone can do for me is watch a movie with me, or hold my hand when I'm scared (because sometimes I hate this disease so much and the CF actually scares me), or hold my hand even when I'm not scared just so that I know you're there.
Since this post was inspired by Heather B. Armstrong and her website - visit www.dooce.com to give her some credit for me being able to express myself and what I need.
Sunday, April 20, 2008
* Do I really feel sick in any physical way? Answer: let's wait until tomorrow to answer that. I haven't decided yet.
* What would I do in the hospital without Colonel Debugger??? (yes, that's the name I gave to my laptop when it was new. If you're super nerdy, you might get it)
* I wish facebook had the power to read minds. Then I would know what's REALLY going on. Then maybe this confusion and bitterness would go away. Just own up, man.
* Depression is easiest to fight when I'm around people who distract me from it. I did surprisingly well this weekend.
* I think I need to sleep for about three days to get over this exhaustion, however. But it's going to be nice tomorrow. So I'll sleep on the front lawn.
* Really boys, do you have to be SO dumb about ALL things???
Saturday, April 19, 2008
Yesterday I was able to do my hair and makeup and dance and be social and take lots of pictures and the nagging feeling wasn't there so much. I was focused on the performance.
And today I went to brunch. It was good. Not onto the thinklings I have about the past couple days.
* I think all these nice things about people, but I never tell them. My new goal is to tell people more of the nice things I think about them because they should know.
* Sarah Lynn is my soul mate. We've been friends for about 16 years - that's a LONG time when you are only 21.
* Sarah and I were talking about the commitment issue that has been talked about a lot on my blog. People have weighed in and voiced their opinions. Lots of opinions. Anyways - Sarah pointed out that being my friend is no less painful than if we were in a relationship. A friendship is a commitment too. And she is brilliant.
* I know lots of pretty people :-) And the photos from the showcase turned out more brilliantly than I could have hoped for. Hoping to get more brilliant pictures this evening - and then make another montage, because I needed more photos of me with people. I keep using the same ones over and over.
*I'm finally a little excited about the CF walk, but I'm really going to need the help of my friends (It's how I get by - 10 points to those who catch that reference), to meet the goal of the team!!!
Currently we're in 5th place - and it needs to STAY that way. I think we have about $400 that hasn't been turned into the office yet, and another near $200 that got mixed up, so we should be getting closer every day - I just really need those $5 donations from everyone! I'll work on that more this week.
Now it's nap until I have to get up and go dance time.
Friday, April 18, 2008
* Showcase today - totally NOT freaking out like I should be because a) I don't care and 2) I don't care. (Mad About You reference with the A and the 2)
* So my friend pointed THIS out to me today. Look at comment 112. Yup that's me and I know him. What a great friend :-)
*I made the donation box last night, and it turned out pretty fucking cool - and only took me 45 minutes. :-) Which is a short time in Carla's Crafty Land.
*How does my toaster KNOW that it's not plugged in? It won't let me push the button down on my frozen waffles if it is not plugged in. My toaster is currently smarter than I am.
*My motto for this weekend full of showcases and dancing and family: I. Don't. Care. That's actually been my motto for the last week or so, so that I don't freak out over all the things I haven't done. Yup.
Thursday, April 17, 2008
Tonight I had a CF group meeting. I love them. It was a couple's meeting tonight and it made me think about a lot of things. There were only two other couples there, but we discussing other couples (because we can do that - we're special like that).
When I first joined the group about four years ago (I can't believe it's been that long - the most supported years of my life), there was a couple I looked up to more than any of the others. The other couples who are most regularly there are couples where the guy has CF - and not that I don't admire them, but there was just this one woman and her husband that I looked up to.
I saw them as what I wanted - a loving supportive husband, who would help her through anything. The way he talked those first couple years was amazing. And she (the CFer) was so strong in her own way - and yet so not like me. Not so horribly harsh and not the type to force doctors into retirement (which I did recently).
I always looked up to her - and still do. She had her transplant a couple years ago, and had a tough time after - but never gave up. Her strength amazes and inspires me. And now she and her husband - the husband I thought was so amazing and exactly what I wanted (so much so that my friend Rachel and I joked about making a slide show of him and giving it to my then boyfriend to say "this is what you should be") - have split up.
And I don't know details and wouldn't share them here, but basically, shit happens. And maybe this disease is just too much for another person to deal with - and by another person I mean a guy who doesn't have CF. The women who choose to marry a CFer are strong and amazing - and the men, maybe not so much. I know a few couples where the guy is supportive of the CFer, but I also see the non-CFer there have many more problems and pull away.
I am just generalizing here - and the couples I know are the ones who WANT to come and share about their CF. They are there for the same reason I am - so that we're not alone. I know the CF group has helped many people - it's just an amazing group of people. And our social worker is what my dad and I call "A real Jedi." He's beyond amazing.
But what I was trying to point out is that I'm realizing it's a tough world out there and then throw in CF and trying to survive as a couple. I don't know how anyone does it. Maybe I'll just stay by myself. Yeah, because we all know that's exactly what I want.
Wednesday, April 16, 2008
And last night may not have been a med side effect - it may have been a 24 hour flu. Let's hope for the 2nd one.
My therapist suggested today that to help me stay awake I should look at magazines - something simple enough to hold my attention span and something I need my hands for. Piano playing is also good. But anyways, after therapy I went and bought $50 in magazines - I was that desperate to stay awake today. And I didn't even finish one magazine yet. (How awful is it that I dropped $50 on magazines though, sersiouly.) But I did stay awake today. And now I'm super sleepy.
I don't feel like writing anything else.
Tuesday, April 15, 2008
I feel like death on toast. Stupid med. I feel like throwing my shoes up is a great possibility. I had to leave dance practice EARLY. I couldn't even get my act together to stay the whole time. You know it's bad when I can't even fake my way through dance.
I have this silly idea in my head that if I take MORE pills they will work faster. Not that I'm going to - don't freak out - it's just a silly idea that keeps popping into my head.
Today was the first day I had an appetite since forever. So I ate a lot.
Honestly I don't feel as bad today as I have lately. I must ask if depression is not a constant thing - if it can be worse on some days and not so terrible on others.
What if this drug makes me worse??? I haven't had the best luck with anti-depressants. Eeep.
Monday, April 14, 2008
Carla's Great Strides Page (Donate Here)
Oh and watch this:
Today she yelled at me for 35 minutes because I am controlling, manipulative and addicted to being sick. I got yelled at for not getting the oil in my car changed (does she have any idea how hard it is for me to get out of bed, let alone GO somewhere?)
We argued because she said that she has been depressed for years and still goes on, and I yelled back "THEN DO SOMETHING ABOUT IT." and that did not make her happy.
I got yelled at for "getting my way" about going to Europe. She doesn't want to go, and she's not going - but my dad didn't let that stop us from going, but now we're going to get shit about it for the rest of our lives. There is a reason I call her the "happiness vacuum." She doesn't want anyone to have fun -whether she is included or not. We offered to let her come with us (secretly praying that she would decide not to because she's not a good traveler. Especially in the mountains). And all she talks about is "her money." Well that money may be in my mom's name, but you know who earns that money? My dad.
Apparently she feels used because I need her help but didn't want her help for a whole week. I'm still trying to live on my own and she and I can't go a week together without a giant shouting match.
So she said she might come down Thursday to help me, she might not.
She ruined my much needed mid-morning to early afternoon nap because I was so upset about what she said. I'm still so upset about what she said. I can't stop crying. Usually I just brush her off, but the depression makes everything she says hurt more.
She has always been like this - emotionally abusive, controlling and well, mean. I've tried to get my dad to do something about her, but he can't.
And not that she doesn't have good times - we get along sometimes and sometimes she is there for me. I just can't count on her to be consistent and to be supportive like I really want her to be. I want her to be like she is sometimes when I'm in the hospital. When she sits by my bedside while I sleep and just holds my hand when I feel really sick. She will wash my hair and give me a bed bath - and that time I spend with my mom is wonderful. I wish she could be like that all the time.
Sometimes she brings me little presents or candy when I'm in the hospital and she actually smiles and gives me a hug. That's what I need from my mom. I need my mom to be like that all the time. Maybe I wouldn't be so desperate to get married and distance myself from my mother financially if she were like that more often - not even all the time - but most of the time.
I know my CF is really hard on her - she's my mother - but blaming me a little less would be a step in the right direction. Understanding how hard it is to do chores. Understanding how important being with other people is so that I don't go completely off my fucking rocker. Yes. A lot of the time I put being with other people above doing things like chores and hell, even sleep, because I NEED to be with people because I spend all day every day alone, by myself, if I don't go be with other people. Maybe my mom is okay living like that - but she has my dad, whether or not she actually likes him is a good question, but she has his company and that's something I don't have.
I wish I had a mother who could deal with this better, who could help me deal with all this better.
Sunday, April 13, 2008
And just to clarify - I am in no way angry with Boy anymore. We had dinner tonight and it was good. I think I said that. I really enjoy being his friend. He's one of the best friends I have and I can appreciate that for just what it is.
So I think I'm typed out for the evening.
Again, thank you to the good people of the internet. And feel free to keep commenting.
So, I've now decided that I will never date ever (because seriously, how could I do that to another human being??? How could I expect another person to want THIS??? To want me and all that comes with me???)
So here's the rest of the conversation with my friend - the reason I came to the conclusion that I can't date. I just can't.
ME: having CF - I really don't get what would be so awful about being in a relationship with me???
Honestly, please talk about this with me because I'm about to lose my shit all together here and I just can't handle crying one more time today. [editor's note: I did lose my shit... you'll read why]
you have a big disease
and it dominates your life
it dominates every part of your existence [editor's note: Thanks for pointing THAT out to the depressed girl, buddy]
and so when you ask people to commit to you
you're asking them to commit to that as well [editor's note: ow.]
ME: but at the same time it is MY disease and they will never have to know what it's like
because they can't.
and no one knows what will happen to the person they commit to - shit happens
they could get cancer
or die of a heart attack - and they are willing to take those risks
but the probability of that happening is low [editor's note: not THAT low - you know how many dead people I know?]
and there is nothing to suggest to the vast majority of people that it will happen soon
yes, it is your disease
and yes, your suffering is real
but that doesn't mean that you can discount the suffering of your significant other [editor's note: SHIT they feel things too???]
you're asking someone to emotionally committ to you
when you are different than everyone else
and have a much higher chance of abandoning them through death
leaving them middle-aged and alone
than a standard relationship
Him: so that's the fear
it's not easy, I think
ME: well now I've decided that I'm never going to date ever because I just can't do that to another human being.
I don't think you have to go that far in the opposite direction
there's a balance
ME: i wasn't joking.
Him: I know you weren't
but there IS a balance
what I think you should do
is date but date knowing what you're up against
and don't be so immediate about looking for commitment
because that comes off as internal fear
if you act as if you have as much time as anyone else [editor's note: I in NO WAY act like I don't have as much time, other then having no regrets and living life to the fullest, and I'm not going to change THAT.]
it's easy for other people to treat you as if you DO have that time
Him: and by the time you're at that point
who knows what sorts of treatments or solutions medicine will have
ME: yeah, go ahead and act like you have time when you're dying.
Him: but like you said earlier
you aren't dieing yet
ME: NICE SPELLING
Him: but it's a greater possibility for later
ME: Oh fuck off, I am dying - at an incredibly faster rate then most people.
Him: ok then
so don't look for super-commitment
look to enjoy what time you have
and look for people to enjoy it with
and that is how you may find what you're looking for in the long-term
at least, that's my theory
ME: I am... I just need more support sometimes and to most people support = commitment
and I want to shoot those people.
Him: well what does support mean to you?
ME: holding my hand when I feel like the world is caving in on me
Him: no, just thought there was more to it than that
ME: nope, not really. that was my simple one line answer.
And it is. Basically that's what I want - someone to hold my hand when I can't handle things. I do a pretty damn good job of handling things, but sometimes I just need someone to hold my hand.
I want someone who can make me smile and giggle and laugh. Someone who will watch movies with me and have intelligent conversations about things other than my disease. Understanding that this is how my life works would be good - a bonus.
At the same time, there is only so much my friends can do. To be more supportive would take another level of commitment to me. Friends can leave easily. Very easily - they do it. I have some really great ones that are there - but they are a different level of friends. And I'm not quite sure how all of this works.
Honestly I had originally said "only so much my friends and family can do" but I took out the family because they do EVERYTHING for me. I would be nowhere without my family. They do everything they possibly can from several hours away. My family is stuck with me and they love me and can't get rid of me, so they do everything within their power to support me and be there for me when I am sick.
I'd just like something more daily. More living with me. Less my mother.
So I suppose support DOES equal commitment, although I tried to argue it doesn't earlier. It does in my case. My deadly, terrible case that I never want to inflict on another human being.
I want a magic wand that erases commitment phobia. I don't have a phobia of commitment. What's wrong with the rest of you???
So I know Boy reads my blog (HI BOY!!! *BIG WAVE*), but this in no way means I'm going to edit what I have to say. And it in no way means that I will necessarily want to TALK about this after I write it. I write so I don't have to talk and I can keep you all informed (I don't like to talk about me - I prefer to talk about ya'll).
So I'm having this conversation with another guy friend:
ME: I want a wand that will erase commitment phobia
ME: I have no phobia? what's wrong with the rest of you fools???
Him: I think people are afraid of your cf
ME:no shit sherlock
that's why everyone has broken up with me or failed to commit -
and those bastards have NOTHING to be afraid of .
Him: so the question is what to do about that
Him: why not?
ME: I deal with it damnit - it's not like they actually have to live it
ME:when I'm in the hospital they get to go home at the end of the night
ME: I'm the one with the needle in my chest and the toxic kidney-failure causing drugs in my system.
Him: what happens when you get married and then you have two kids and then you die at the age of 30
Him: leaving behind a husband
Him: what happens to them?
Him: that's what they are afraid of
ME: Well don't think that far ahead - I CAN'T HAVE KIDS CURRENTLY.
That's right. I CAN'T HAVE KIDS. The strain on my body would probably kill me and/or the baby. The judges don't give babies to mothers who are dying, and I just can't have kids. This in no way means I don't WANT kids (where that conversation proceeded to go), but I CAN'T have them. That's a whole other issue.
So anyways, On Not Dating - which is what Boy and I decided to do - well more like he told me.
So here are parts of the "terrible, horrible, upsetting email" that I sent him, just to give you perspective on how I felt:
"I knew from the start that you were going to have big issues with my CF, and when I came out and finally told people how much I've been suffering for the past couple months, I thought you might understand and support me. I thought you were smart enough to realize that dealing with things like this is learned, not a natural talent.
And there were all the hurtful things you said while holding me and I just wanted to beat the crap out of you. I finally couldn't take your bullshit anymore and told you to leave. AND THEN you call her as soon as you're out the door - SHE KNEW MORE ABOUT WHAT WAS GOING TO HAPPEN THEN I DID, YOU STUPID BASTARD.
You've made me want to scream and rip all my hair out. Like I really needed another guy to be a douche bag and treat me like this."
So that's what I sent him, and after I took a four hour nap I felt sorry, apologized (WHAT THE HELL DID I DO BESIDES THIS EMAIL, ANYWAYS - WHY DIDN'T HE APOLOGIZE TO ME???) and worked things out with both him and the girl I was talking about in the email. And yes, I in no way meant to drag her into this, but apparently she is the best person for both of us to talk to - and *SCREAMS* I just really needed someone who would only hear my side.
Honestly, last night I thought that was the meanest email I had ever sent - but when I re-read it tonight I realized that it is in NO WAY the meanest email I have ever sent. Haha. I have sent meaner emails to people I was barely mad at.
That's not the point of this either. The point is that in Boy's mind, I think that dating and not dating are the same thing - minus the commitment. There WAS NO commitment when we were dating - and I asked for more commitment because I didn't think I could handle the casual dating and going through this depression thing. So his solution was to STOP DATING but keep hanging out in the same way as if NOTHING happened.
Now I like this hanging out. I really do, and he has TiVo, so he'll never get rid of me, but this is my little rant to the world because I'm not only depressed - I'm royally fucking confused.
I have CF friends who have nice, committed boys. Where is my nice, committed boy???
This CF thing doesn't have to be as scary as you think. Let me throw you in the CF pool - I swear you won't drown.
I haven't drowned yet - and I'm the one with the daily nurse, the one with the millions of pills and treatments, the one who had to drop out of college, the one with limited abilities due to my inability to breathe correctly, the one with the giant needle in my chest.
You are the one who gets to still do activities that you love (because seriously, what kind of person would I be if I made you stop doing things just because I can't do them???)
You are the one who just has to be there while I sleep excessive amounts (because seriously, what kind of person would I be if I made you sleep excessive amounts because I need the rest???)
You are the one who gets to go home at night when I'm in the hospital unable to sleep. You get to sleep in a normal bed and not have nurses keep you awake all night (because seriously, what kind of person would I be to demand that you also have to get a shitty night's sleep???)
You are the one who just has to hold my hand and tell me it'll be okay.
...and I've just been told otherwise... but that's my next post...
"Her mind is tiffany-twisted, she got the mercedes bends
She got a lot of pretty, pretty boys, that she calls friends
How they dance in the courtyard, sweet summer sweat.
Some dance to remember, some dance to forget"
I wish I could go back to dancing to forget everything. Dancing is my passion and I really want to enjoy it. If nothing else, I want to enjoy dance.
I love "Hotel California" - it is my hospital song, mainly because of this part:
"Last thing I remember, I was
Running for the door
I had to find the passage back
To the place I was before
"relax," said the night man,
We are programmed to receive.
You can checkout any time you like,
But you can never leave! "
But this is how I really feel about my depression. I have been running and running from it, and now I just can't leave.
I feel better now that I talked with my Dad and I think we have a plan. I always like to go to the doctor with a drug in mind so they don't suggest something horrible that will mess up everything else I'm on. This prevents me from losing all confidence in yet another doctor.
And by I "feel better" I mean I'm not so fucking anxious trying to figure out how I'm going to fix this.
And to those of you who don't agree with psychotropic drugs: SUCK IT. If drugs are the fastest way to get me back to who I used to be, then I'm all for it. Drugs were the only way I could get over my PTSD and holy shit am I a fan. I am NOT a fan of people who will criticize me for choosing the "easy" way and taking the meds. The meds are in no way an "easy way." I still have to get doses right and find a med that works without changing too many of my others, and oh wait, I'M STILL DEPRESSED until the meds are perfect.
So if you think I'm weak for going the drug route, that's your opinion. Please keep it to yourself.
The Queen of Sleep is back. Last night - 5pm to 9pm, and then after realizing what I had done and fixing it, about 10pm to 11am this morning. 17 hours of sleep. And I'd like to go take a nap. And I've doubled my does of the med that is supposed to help me stay awake. But I'd really like a nap.
I am going to take baby steps to get better. Today I want to pour my meds. If I get that done it is a good day. If I also take the trash out, it is a great day.
Boy and I are no longer dating. I got really angry. "I'm going to string him up by his toes and beat this shit out of him" angry. And yes. Some of the things he said to me would have totally deserved me doing that. And I'm not going to go into the things he said to me - but I'm so fucking tired of my friends trying to "fix" me.
This is the 2nd email I sent to Boy last night:
"I'm sorry the last email was so harsh, but it's what I wanted to say at the time. I think we
should still be friends - really good friends even, and you're right. I don't think the dating
thing was going to work. I just really wanted it to so I could have someone to count on. Right
now is really hard for me, and everyone keeps trying to "fix" me, trying to find out why I'm so
depressed. I don't know if anyone's noticed this but I've got this deadly disease that kind of
puts a damper on things. "
And my desk is all stained and warped from tears because a lot of the time recently I've spent sitting here crying - if I'm not in bed.
And my mother - she keeps calling me - several times a day to ask if I'm better yet. What the fuck??? I know we're waiting for the iron to work, and maybe it's starting to, or maybe I'm passed the complete nervous breakdown stage.
Yesterday at dance I fell asleep. I laid down on the floor and fell asleep. And then I had to get back up and dance and I was all smiley and made it look like I was having a good time. It's called a performance - that's what I do. And Boy said something about it looking like I was having fun - but obviously didn't notice how horrible I felt the rest of the time. It was physically painful to sit there and watch the others perform. I just was so unhappy.
And that's pretty much how things go. I don't even have the attention span to pay attention from the start to finish of an entry I am typing. That's frustrating.
Saturday, April 12, 2008
*This sentence from a comment I got: "You'll make it. Let me know if you need me to drive to Madison and kick you. " That made me smile.
*Ashley and the awesome custard thingy and the bread and the great stories she tells.
*Sarah and the talking.
Things that have not helped in any way:
*The fact that it is snowing today and I have to go to dance, something I no longer enjoy.
*My mother wondering "what is wrong" with me, and asking me if I'm "Just being manipulative so she'll come clean my place" and then she adds, "Because you know you do that." SO FUCKING NOT HELPFUL. Where was my Dad? He should be monitoring all conversations with the fragile daughter and stop my mother from saying shit like that.
*The fact that I have to get my ass into the shower, put on makeup, a costume, take my other costume with me (don't forget a bra or you're fucking screwed) and go to dance. Can't I just sleep??? PLEASE???
*Oh, and if we are missing ANYONE at this dress rehearsal I will fucking lose my shit and spontaneously combust and they will have to find a new vice captain - maybe they'll find one who gives a damn. Maybe someday I'll care again, but not anytime soon.
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 bed. Getting out of bed is so hard.
Baby Steps. I'll take Baby Steps. Too bad I have all this damn dance practice in the way of my baby stepping this week. Right. Damn showcase - and those of you who know me know that's NOT how I was about last semester's showcase - I'm a different person - a depressed person, and I don't like it.
Friday, April 11, 2008
So I called the gynecologist and explained that I am bleeding and have CF and I need to get in to see her - and the best they can do is end of June beginning of July- and my exact words were, "You're fucking kidding me." and the receptionist said, "No, I'm not and I'd prefer if you wouldn't use that language with me." Well it was an instinct. What am I supposed to do??? Bleed until the end of JUNE? Bleed my way through Europe??? You're FUCKING kidding me.
And the soonest the nurse practitioner can see me is wait for it... April 28th. NOT EVEN NEXT WEEK. YOU'RE FUCKING KIDDING ME. That's 2.5 weeks from now. Thank God we're pretty sure I'm not dying, or else I'd be FUCKING screwed.
The nurse is supposed to call me back and talk about things so I can get an appointment sooner, but all this makes me want to never make another phone call or see another doctor ever again. I hate doctors so much.
They are supposed to be there to help you when you have problems, and they can't help me until July, apparently. That's the next opening she has to help someone who needs to figure out why the fuck she is bleeding every single day of the month. Oh wait, there are about two days I don't bleed - If I'm lucky.
I hate doctors.
I'm depressed and this is awful, but the good people of the internet are GREAT people of the internet. Read some of the comments I've gotten - they are amazing.
Today is another bad day - and I don't think I'm going dancing. But I want to go and I want to have fun, but I don't think I can have fun. So there's that.
Okay I'm going to go do nothing for the rest of the day.
I've now gotten myself all worked up and I need to figure out what is wrong with me and what I want and what I need and I need to fix it all before I can fall asleep. And we wonder why I sleep through the day? Maybe it has to do with me being up all hours blogging because I can't sleep. I can't shut my stupid brain off.
I am now trying to figure out why I am bleeding. Let's go to webMD (my worst enemy - I HATE that website) and see what they say is wrong with me.
Okay, so I am suspecting that maybe I have a yeast infection - so here are some of the things webMD has to say (my symptoms fit):
"Rarely, the yeast infection may spread throughout the body. In systemic candidal disease, up to 75% of people may die. Even common mouth and vaginal yeast infections can cause critical illness and can be more resistant to normal treatment
Yeast infections that return may be a sign of more serious diseases such as diabetes, leukemia or AIDS."
Right. That's why I hate webMD. I have AIDS and Leukemia now because I'm already diabetic. That must be it. How can I go to the doctor and say "Test me for Leukemia please. webMD told me so. Thanks."?
Or I might have Cervicitis - what the hell is this? Does this explain my bleeding. It doesn't say.
I like this one: Premature Labor. Right. SHUT UP. I'm not pregnant.
Also - Aspirin Use. I'm not taking aspirin. Pretty sure that's not it you stupid computer.
Okay, well I know I have Uterine Fibroids - and these symptoms actually fit and make sense. Now I'm freaking out that I might need surgery to remove them. I have a big "THING" in my uterus that causes me to bleed - and I think that's what is causing this bleeding and more severe anemia and all my pain, etc.
I suppose I'll have to go in to the gynecologist and figure this shit out. I don't want to have surgery - but maybe they can schedule that one for the same day as a sinus surgery - or maybe they'll just take out all my reproductive organs all together and that would make my life blissful.
I would regret that if they ever get that treatment for CF that might make children possible. RAR.
Thursday, April 10, 2008
I am a picker. Two years ago I was able to get it under control and it is only an issue occasionally any more, but in high school and the start of college it was terrible. It went along with my PTSD and OCD and control issues, and I've been having more problems with it lately.
I am having problems dealing with my lack of energy and the fact that I am bleeding so often - like everyday, despite being on the pill that is supposed to make my period go away completely. And I just don't have the energy or the drive to pick up the phone and call the gyno to get an appointment to try and figure out what's wrong because I feel like they aren't going to figure it out anyways, so why should I bother?
I've been picking again and I don't know how to stop. There's nothing there but I pick at it and get it infected so that there will be something there to pick at. I think this has to due with me feeling like a failure. My friends are graduating and all I want to do is push them away because I don't want to think about all those people getting what I really wanted. I don't know how to express how much I really wanted to become something. I wanted to overcome my disease and do something.
I'm failing. I can't get out of bed for very long during the day, let alone get anything accomplished. I want my place to look presentable when my parents get here next Friday, but I have no idea how that is going to happen. I need to pick up clutter and do dishes and maybe laundry and it's all just a big mess. The floor needs vacuuming and dusting and I just look at it, think about how much work it is and go back to bed.
Not only am I failing here but I am failing everywhere else too. I am supposed to be a good Great Strides team leader - and we're not close to our goal of $5,000 yet - no where near it! And I am supposed to be doing the media stuff for the Great Strides Committee - and I haven't done anything. And I'm failing as a captain of the dance team. And I am failing so hard I can't even pour my meds and realize I'm missing my iron, which could be why I'm so tired.
And I'm so depressed that I'm thinking of going to the hospital for my IVs after the showcase just so I can avoid the world for two weeks - I wouldn't even be able to blog since my laptop fails hard. Seriously it is dying hardcore. I just want to avoid the world and be curled up where no one can get to me - well the hospital isn't the best place for that - people walk in and out of my room all the time - but at least I wouldn't have to do anything myself. And Mom and Dad would clean my place.
I can't stop the urge to hurt myself. Being a picker is like being a cutter - the physical pain is a compulsion and in some ways feels better than the pain inside of me. Sometimes it's like I'm punishing myself for failing, and sometimes I am causing physical pain to ignore the emotional pain.
* The sun to come out and play.
* The energy I used to have (hopefully this will return once I've been taking my iron for awhile again.)
* No need for a nap.
* This silly little cough to go away (you have no idea how funny that is unless you have CF or know me really well).
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.
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