This is Sexy? Halloween Costumes, Part 2

This is a cat costume. Yes, I know.

I know that I said I would save the various ethnically insulting costumes for later, but seriously... Look at this.

Strange Sexy Halloween Costumes

No, this isn't CF related at all. But it is getting near Halloween, and if you wanted to go as something strange/offensive, yet also sexy, yandy has a deal for you! I'll probably spend a couple of days just going over their weird Halloween costumes. Because seriously... these are weird. I also wish there was space for all the various Native American costumes they have going on. I might just do a link dump of those at the end, and the rest of the exotically sexualized cultures.



What on earth is that? It is a sexy panda costume. '
Panda Bear Corset and Skirt
Sku: PA700
You'll charm the bamboo out of them in this fun and sexy panda bear corset and skirt set. Juniors sizing, runs small. '.

Honestly, your guess is as good as mine. There's also a sexy polar bear and a sexy fox. And a skunk and a bee... and lots of other animals.



Sexy strait jacket. Because nothing says sexy like mental illness! Charmingly, this is called "Anita Straightjacket".

'No amount of medication can keep her from going crazy over you." Kill me now.



This is actually the second sexy clownfish costume on the same page. I had trouble choosing between the two.

More coming tomorrow!

Dating and Cystic Fibrosis

I think the relationship between relationships and having cystic fibrosis is a curious one. You'll meet people who care very much, but in a negative sense. You'll meet people who don't care at all. And then, on rare occasions, you meet someone who cares for all the right reasons.

Between not caring at all, and caring in the negative sense, I think not caring at all is the worst crime. When someone is negative, they respond right away, and you know they're not worth it. Someone not caring is slow and more insidious. You start thinking "Well, this is okay", but it slowly devolves to the point where their sheer callousness gets to you.

I'm musing on relationships because I had a date last night. Maybe I'll save that for another entry though.

The Wonderful World of Antibiotics

Antibiotics are really not a new thing to any person with cystic fibrosis. This is, however, the first time I've had to take them twice in one year, which is somewhat alarming. I spent all summer working out and toning my body up to make my lung function rise, and when it fell a few percentage points, I was concerned. I agreed to go on Zyvox and Cipro. I'm not quite sure if they've worked, and I still have a day left. I do know what they do to my body though. I've been tired, dragging my feet and napping a few hours a day. My appetite is definitely down, but I haven't had enough energy to work out, so I'm not sure if I've lost weight or gained.

The food restrictions are the worst, I think. No chocolate. Or dairy. Or coffee. Or bananas. I've been dying here bro. DYING.

Remind me that this is all worth it.

The joint pain is a new thing

But apparently not unheard of in CF patients. Still... It's really not all that fun to have sharp pain in my elbows and knees on and off all day.

/end complaints

We are all romantic poets

Conscious of death, embracing it as part of the sublime. 19th century sensibilities in the 21st. We all go the way of Byron and Keats, gone too soon in a flash of light. But while we're here, we can make life meaningful and put our triumph into words. We live with purpose because we know the inevitability of death more keenly than others, are not stuck living our life in some idea of meaningless immortality. We are creatures of the sunshine and the day, though we sometimes hide the night in our souls. Our purpose on the planet may not be clear yet, but it soon becomes evident, and we strive for that goal more than anyone else.

An update or two

I've had a cold over the past few days, but it's been interesting. For once in my life, I had a cold that wasn't dramatically worse than everyone else's. In fact, my cold was milder than what some of my friends got. It was very strange. I hunkered down and prepared for the worst, and it never came. I'm tremendously grateful for that, of course... But also somewhat baffled. My nose is still runny but other than that I feel 100% normal. I even had some extra energy the other day, and that never happens.

Overall, I'm feeling quite good. I don't know what my current FEV 1 is, but I hope it's continuing to improve. I have been somewhat lax about exercise to my own detriment, and as much as I keep telling myself that I'm going to get up and go, it's so hard to be motivated. I can think of an excuse easily, and meanwhile the mucus is just building up and clogging my airways. I know it's bad for me, so why am I still so adverse to running? With the recent, well publicized deaths in our communities I feel slightly more motivation, but I still can't seem to do it. It would help if I could find some form of exercise I actually /like/, I suppose. I was very much into basketball when I was younger, but I'm too short now, and quite frankly, it's not fun to play when you're small and everyone else is massive. Running is my best option right now... Hence the catch 22 scenario. I hate running, but I hate it marginally less than I hate other forms of cardio exercise.

Other than that, life has been reasonable. Money continues to be a big problem in my family, and one that continues to provide most of my stress. I am very much feeling the money crunch right now. It would be so nice just to be able to buy books without counting coins, and I can no longer afford horseback riding. I'm not too upset about cutting down my retail expenses as I don't buy clothes very often anyway, though every so often I see a piece I want.

I've also thought quite a lot about travel lately. I want to take a year off to travel before embarking on the grad school process, but the feasibility of that is fast diminishing, as is the idea of taking a semester abroad. I'll look into financial aid for the studying abroad, but the travel won't have the benefit of school money. I want to see Australia while I'm still young and healthy. Another dream of mine is to visit Africa. For how, I can only hope that my parents will get jobs soon, and continue looking at internships and positions that I can fill part time.

On being a role model

It seems like a curious quirk of circumstances. The same genes that gave me a devastating lung disease have also apparently made me a role model, whether I like it or not. The wisdom of the disabled is some quasi-mythical mindset people seem to have- it's like Native American wisdom, but without the benefit of feathers you can incorporate into fashion spreads.

Quite frankly, this isn't a position I'm comfortable with. I don't see myself as a great dispensary of wisdom. I don't think I'm any more wise than a normal twenty year old (yes I do, but that's because I'm conceited). I'm a terrible role model, yet people have this expectation that I should be some holy grail standard to be held up to. I don't do motivational speeches. I have declined several times to print my thoughts in a CF newsletter. It's not my beat.

Children, don't try this at home. I won't deny my life has been hard, but I can't say that I've had the paths others have had. There have been many cystic fibrosis patients worse than myself. I was just upped from mild to moderate a few years ago. I've had relatively few hospitalizations in my life time. I no longer require PICC line treatment. If I actually bother to work out, I can get my lung function into the 80th percentile or beyond. At the same time, I am a deeply cynical person. I'm not always kind. I'm immensely envious. At the age of twenty, I do many things that good little girls and role models shouldn't do. In the past, I've cut myself, threatened suicide. I manipulate my illness to skip class sometimes. I don't feel like going- I'm not feeling well. I'm lazy, self-absorbant, and vindictive.

Am I really a role model? Do my genes require that I be something that I'm not? It's a conundrum, and one that I don't think I'll ever have the answer to. But I can assure you that I'm not a mystic. Please seek your answers from the more enlightened.

Money

There's something beautifully ironic in reading essays by travel writers talking how they believe people with less money are happier just as my family is struggling with the issue.


Cystic fibrosis is an expensive disease to have. Even with our Kaiser coverage, medications still pile on in price up into the thousands, and while I really shouldn't, I do feel guilty. Both my parents are in the movie industry, and that's a difficult industry at the best of times. Right now, it's horrid, and neither of my parents have held a steady job for at least three years now.


Switching majors is not a decision I regret, but it's put me somewhat behind in the grand scheme of things. I need to take summer school if I want to graduate on time, and I can only take the classes i need at UCSB- community college isn't an option at this point, because I need to take upper division classes, and those aren't transferable. As you can guess, it's expensive. Rent around here is crazy- I'm attempting to find a place to sublease for under $800, and I haven't found much luck so far in finding a single for that price.


Given our financial troubles, I may well have to drop summer school. It's a depressing thought, but I need to get a job to help support the family. It feels like a curiously heavy weight to have to be 20 and be told that I need to provide support for my parents.


There's also been hintings and rumblings that we're moving to an apartment and selling our house. I have no problem with that- but most apartments don't allow pets- especially not cheap ones. That is a problem. We have an older German shepherd, eleven years old, who is a BIG dog, and he needs space. I also have a small parrot, and there wouldn't be a lot of room for his cage. He's bonded to me- the thought of selling him breaks my heart, but it may be something I need to consider, because he can't live with me here in the dorms.


All in all, though my health is good and I'm happy with recent decisions i've made, this is a depressing time for me. I've started applying to jobs in this area so that I can hopefully make enough money to support my rent, but it's looking like studying abroad and visiting Australia aren't going to happen any time within the next few years. At this point, I'm hoping we can afford to finish school and not rack up any more debt than we have with student loans. The school won't give us financial aid because we legally own the house my grandmother lives in, and they told us that if we were that desperate we could sell the house. Uh, no we can't. My grandmother lives there. What would we do with her? Her whole life is up in Northern California, and we live in LA.


I may have to consider selling some things of mine to make money as well. I can probably get a couple hundred for my Xbox, which would cover 1/4 of rent... and then I don't know. I really hope Borders gets back to me and offers me a job, because I'm not sure what I"ll do otherwise.

An Article

Written about me and cystic fibrosis while I was in high school. I thought I lost it!

http://www.tokoni.com/experience_view_confirm.php?id=2983

Turning 20

My god, I've suddenly turned old, haven't I? This Thursday was my twentieth birthday. It seems like a fairly significant mile stone to me, given the cystic fibrosis and what not, but I still can't help feeling like an old lady.

The best present, by far, is that my mom agreed to pay for some riding lessons for me.