Tuesday, June 29, 2010

This will be short... this will be short...

I have this problem, of always starting off telling myself, "I'll just post a nice short little blog today" And then I start to type and the words have minds of their own and start to spawn all on their own, I swear! So today, I am forcing myself to actually make this a short post:

I hate the fact that I'm so pessimistic. I love reading all these other CFers blogs, but sometimes their positivity just seems so.... annoying? Sad to say but it really pisses me off. Seriously, the people who claim they wouldn't give up CF if they had a choice because it 'made them who they are' ... well that's just the most ridiculous statement ever! C'mon. It's okay to say you HATE CF. It is, I promise. Just like people hate spiders, and usually spiders don't even cause you harm. They just catch flies (fine by me I absolutely despise flies with a passion). But to say that you wouldn't give it up?? What is wrong with you? Ugh.

And then there are the medium mixed crowd; who sometimes vent about hating CF but sum it up with things like "But its okay to be negative every now and then, negativity in small doses is usually constructive. Not enjoying CF will only help me to fight it more, and I'm still so positive blah blah blaaaaaah" Just when I think I can relate to another cynical hateful CFfilled CFer, they go and get all positive on me. Really? Why can't we just be allowed to hate it? I hate it, your parents probably hate it, you can hate it you know. But people just seem to think that its not okay to whine and complain about how much you hate CF. Well, this isn't one of those blogs. I hardly say positive things on here (although I'd love to change that...) for me this is my place to whine and complain and flat out scream that I, Elizabeth, HATE CYSTIC FIBROSIS! And now I'm done. Maybe tomorrow I will be more positive -- (doubt it ;-P)

Monday, June 28, 2010

My Ear is Inside OUT!

Say What? That's right. My ear... is inside out. Or at least, that's what I like to call it. You see my lovely ear decided a few weeks ago to get 'clogged up' or 'fluid filled' or whatever happens when you can suddenly hear yourself as you speak (echoing in side your head), or when you breathe in you feel air seep through your ear canal? Does anyone know what I'm talking about here?? Sometimes this feeling happens when you block a nostril and snort up your nasal med through the other one. Boom! Inside out ear. But those usually go away.

Now, this isn't just a 'my ear is clogged'. Oh, no, it's never that simple! See my ear will be inside out most of the day, then whoosh, just like that, clear as day. Its very very frustrating, not to mention uncomfortable! I explained all this at clinic, and I thought it was just all the extra fluid I have in my nasal cavity... but apparently not. I love my new nose spray that I got, dries me right up... except for this silly inside out ear.

The Dr. W. said if it is an ear infection, then the bactrim will take care of it. Mmhm. Sounds like good reasoning to me. So why after a whole week of bactrim is my ear still inside out?! I don't like hearing what goes on in my brain, or worse, my heavy breathing! And man, breathing in? The worst! I breathe in through my nose and I feel like my ear is going to implode into my skull. Really, ear, really?

Dear Ear,
Please turn right side out again, and stay that way. You are for hearing, not for hurting. I would be much obliged. Thank you,
Your human aka your home.
PS if you don't straighten out Imma go Vangough on you and rip you off. Just sayin' get your act together. =D

Anyway, now that I have sent a lovely death threat to my ear, lets move on with even more frustrating CF related things. . . INSURANCE! Woohoo. This is one of my favorite topics. I love insurance companies! They are seriously the best. (Anyone detect sarcasm here?) Well, my mom was Audited at work to make sure I was still a full time student. Which, I'm not.... hmm. I had sent my Michelle Law paperwork in (overnighted btw to make sure it got there FAST...) but now that I'm 20 dollars poorer, and no Michelle law, I need to fill out Cobra stuff because lo and behold I am insuranceless!!!!!

AHHH. What a scary statement that is! I can't fill anymore meds, or see any doctors until I have cobra. And I only have 2 days to get the paperwork in. Seriously people? two days? What is that? Oh not to mention the winner -- price. Oh yes, lovely lovely price. What's that you say? 600 dollars a month for coverage? No problem, let me just break open my golden piggy bank to reveal my diamonds and rubies... oh wait, I live in the real world -- hm alright, try this again. 600 dollars you say? What the #$@! ??? Serious? I mean, don't get me wrong 600 dollars is much better than 250,000$ a month but how am I supposed to pay that? Ugh what a mess.

It doesn't help that my mother is being soooo unhelpful. 'Mom call me when you can" -I get a text. Mom do you even know what CALL ME means anymore? Texting doesn't cut it. EVER. I swear that woman is off her rocker. Anytime she can get out of speaking with me via text instead she will do it. What a bitch. yea yea yea I know, she's my mother, but honestly until she starts acting like a mother again I'm not calling her mom. I call her Karen all the time. But, I digress, back tot he story.

Mom- call me... texts me instead. GRRR but I go along. "Mom, Can I have the number for michelle law so I can see if I can't get this to go quicker, because cobra is expensive"

Mom: "well you don't have coverage RE you need to do cobra now. Sorry!"

(What am I stupid? Obviously, but I still need the number...Oh and what is this sorry business, does saying sorry about it being expensive imply that you will not be helping to pay for it?? )
Me: Okay, well do you have the Michelle law's ppl # b/c if it takes more than 5 months to go through I should just become a student again =/

Mom: I don't think it will take long. they should be sending us confirmation that it is being review and that the letter should tell us when to expect an answer

(still no number! If I can just call them, I might be able to get an answer sooner than waiting for a letter that you will [probably get and forget to tell me about)

Me: ------------------------------ *At this point I gave up texting her because it was useless. Also, because kyle spilled oil all down his front at work so I needed to bring him a new set of clothing.

Sigh, mom oh mom, you get a letter today too:

Dear Karen,
Please start acting like the woman I used to know. The woman who LOVED her children very much so, and would jump through as many hoops as she had to, to help her babies. Now, you couldn't give two hoots what's going on and everything that's going on [with me] you see as a 'hassle'. You have simply washed your hands of responsibilities of both me and Julie, and its heartbreaking. Just because I moved, doesn't make me any less of a daughter. I could still use a little money here and there. (Don't get me wrong I'm not 'ungrateful' I really do appreciate you paying for my car insurance and health insurance... but I'm saying a little help towards rent or groceries would be cool). I don't know Karen, you just seem so ... distant and childish lately. Claiming 'you're not going if Stash is going" as your daughter is being carted off to the hospital in an ambulance??? This is not about YOUR feelings karen, and it should never be. You should be willing to do anything and everything for your daughters. Especially the one who lives with you right now who really needs a lot of help. You should be embarrassed that Stash does most of the housework there. And if you even try to tell me she won't let you, that's bullshit. Do it before she does and you won't have a problem. I'm just saying. And that same old excuse "Work is stressing me out" yea yea yea work stresses EVERYONE out, you're not special. And you think WORK is stressful? Try having a disease where you can't even work because ssi and akjdf;lkajsd;fkja;dfjk see now I'm on a tangent and I"m just getting more and more frustrated, because even though I'm not talking to you I feel like I'm talking to you and you just don't get it. So Karen, please PLEASE please please go back to the fun loving MOTHER I used to know. I'm not sure I like the new cougs very much. ='/

Your Youngest,

PS and if you read this in real life, well it's your own fault, I've told you before not to read my blog, and theres a reason why I don't link it to anything... but if you do read it then I'm also glad. I have no intention of hurting you, just hoping to help you get your priorities back in line. That said take what you will from it, and will you please start loving me again??

Sigh. Now all I'm upset. Not crying my eyes out upset, just disappointed. My lawyer finally called me back saying he didn't get my first message, "The machine must have dropped it" OR you just didn't feel like calling me back you asshole. Apparently court dates are taking 12-14 months to schedule. SCHEDULE never mind actually going to court. It could be scheduled for the next year! I just feel like I'm losing my mind. I just want to be done. I want to worry about things normal 'teens' do. I want to worry about my highlights, or how tan I am, or what I"m going to wear to the club on saturday. Or who I'm going to get a drink with on thirsty thursday. I don't want to worry about when my SSI will finally get approved, or how to pay for health insurance, or my mother not caring for my sister in the ICU, or needing a gtube because I can't gain weight... I don't want to worry about these things. EVER. And yet, these are all the things I am worrying about. I don't care what my hair looks like anymore, I don't even have friends to go to the club with, and dancing for 4 hours? mmhm okay, nough said. I've just had enough. But I can't do anything about it. I can't just throw CF away. I'm trying my best to love my life, I really am, but sometimes it just downright SUCKS. There are some things I wouldn't change for the world. I wouldn't give kyle up for anything, and if having kyle means I have to keep CF, then I would, but if I could give up CF and still have kyle, I would chuck CF in the garbage disposal and watch it be chopped up into smithereens.

Alright I'm done. I started to blog with the intentions of just jotting down my frustration about my stupid inside out ear and now I'm just gone on and on complaining. Oh what a day it will be. But at least my coffee was made right today? (almost but I'm counting it as right anyways).

Tomorrow will be a new day, and that's what counts.

Friday, June 25, 2010

Conner Man

Little Conner Man lost his battle with Cystic Fibrosis last night. He was braver than I'll ever be. My heart absolutely just breaks thinking of Sarah and her family. How empty her heart must be. I simply cannot imagine what it must be like to lose a child. A part of you. Conners story can be found here. It is not a fairy-tale, and there are no happy endings; only CF. Caution: it will rip your heart out.

Breathe easy little conner man. Thank you for being so brave and sharing your amazing story with the world. Enjoy those well deserved angel wings.

Monday, June 21, 2010

Stranger like Me

I will try to keep this organized?

I had clinic last Wednesday. It went better than expected. I only lost 4 lbs (which is good because that means I gained back 6 of the ten I initially lost) and I wasn't even wearing Jeans! haha. My PFT numbers didn't go down. --Not true. One number went down but not by much, FEV1 was the same at 64% so no real worries there. I still asked for bactrim because I am feeling sick. I also switched to Creon enzymes so I can get vitamins and high calorie drinks for free. I got some info on CF and pregnancy to read over (for the future MOM -- if you somehow find my blog again and read it even after I told you not to?) and the doc said that basically if I can keep my lungs above 60% and stable then I shouldn't have too much of a problem... but he had no idea about my liver issues and pregnancy so they'd have to get a specialist for that. Also he said it would be a good idea to be followed by a High Risk OBGYN instead of a regular gynecologist because the better they know you and your health, the better of a doctor they can be to you. (did that make sense? I had a hard time wording that). I also stopped taking Megace due to it stopping my periods, and in order to think about pregnancy you need to have stable lungs, stable weight (workin on it) and stable cycle (working on it haha). So that was that. Thank goodness Shannon my psychologist was there to help me ask questions - she's such a lifesaver. Anyway, Hospital stay is scheduled for July 12th, and on the 15th I'll get my wisdom teeth out. thank goodness. It hurts to smile because they 're so sharp poking out my gums! They slice up my cheeks. =( boo. That's about it for the health category... Oh except my compressor for my nebs broke and I chose the worst company to buy it from and I was going to return it (It was broken lovely right?) until the ferret demon decided to chew up the filter! GAH. 150$ down the drain, thanks goose.

Social Life:
Well usually there's not much in this category but I made a new friend! She lives in my apartment complex and her name is Mari. She's really nice and we get along really well.Its unfortunate though, because she goes home for the weekends because she has a little girl. She's my age, and we're so similar, I just wish she was here on weekends lol. But she has more important places to be. haha
Also, went to a crab pick, where you buy lots and lots of crab and just sit around eating crab all evening/night. It was so much fun. It was such a nice night, the people were funny and also intelligent (they were all W&M students or similar situations) which is refreshing because you can actually hold a conversation that doesn't have anything to do with MTV. It was a nice treat for me because I had 3 beers! hehehe. I'm not supposed to drink with my liver, and I hardly do anymore, so after 1.5 beers I was feeling great. I was probably a little tinsy tiny bit drunk by the end of that 3rd one. But I sipped them over a period of 4 hours or something like that. No funneling for me. haha. It was still great.
Next, I have begun taking marinol again due to not taking megace. Well, it makes me eat like no tomorrow. I literally eat until I feel like I'm going to throw up. Last night I ate over 2 lbs of food. (I like to weigh myself before and during this eating fest). Well, if you have no idea what Marinol is, it's synthetic THC aka weed/pot/greens whatever you call it. The difference is its not supposed to theoretically get you 'high' just supposed to make you hungry? (this is what the doctors think) well, what it really does, is make you high as a kite, and then you feel as if you haven't eaten in years and you will try to eat anything you can get your hands on. At the cost of being a moron. I love marinol because I really do eat a ton of food while I'm on it. And its comforting to know that if I haven't eaten much all day I will eat if I take marinol. Whereas some other appetite stimulants sometimes work, but sometimes don't? Moving on-- the reason this is in the social life section is because I decided to call some friends up. And leave messages. I can't tell you what I said but one of them called me back and chatted with me a bit. This is a snippet he reminded me of later today:

Me: Who? what?
Him: Tyler shinn, you know the boy who called kyle
Me: Tyler shinn, oh you must be talking about the world cup because they wear shin guards!
Him: *Lots of Laughter*
Me: *hands the phone over to kyle* I'm not sure what we're talking about anymore but I think it was funny because he's laughing...."

Oh the price I pay to eat. =\ Most normal humans think its "cool" that I get to take marinol legally. I however, disagree. I cannot do ANYTHING on it. I can't think straight, I can't talk, I can't really walk or I get virtigo/dizzyness, I laugh a ton which is good chest exercise except I'm too relaxed to cough! Its very very different than 'smokin a joint' and sometimes I get extremely embarrassed that I need to take it. Because I don't know what I'm going to say, and I don't know how I am being presented. Everything is skewed while you take it, and I get paranoid easily. I can't figure out if I'm dreaming or if its real life - so I can't pee (thinking its a dream and I'll really just be peeing the bed?) then when it starts to wear off I crash into bed and sleep like a rock. Luckily kyle loves me, and knows I'm not that dumb all the time -- just when drugs are burning holes in my brain haha-- And my friends know my situation and just find it amusing if I do leave them a call and they know I don't necessarily enjoy 'being high' if you will.

It was a mess, and we (kyle and I) bought a 5 dollar chess board/checkers. We decided to play and I kept losing and then I was getting pissed off because I kept losing and feeling dumb, then goose ate my machine -- so I was furious. So what did I do? I cleaned. It took kyle and I 2 hours to clean 750sq. feet. haha. Thats how messy and gross it was. Plus we have a fly infestation. Its the most disgusting thing ever. Fruit flies. so small you can't even smush them with your hand. We tried to suck them up with the vacuum. Didn't work so well. But now the house is clean and its much less stressful.

thats all I have time for today because apparently I'm supposed to drop off this movie, and mail a package and bring lunch to kyle then go to work earlier so her pipes can be fixed. >( I don't like when people tell me things last minute. It takes me a long time to figure out where my energy will be spent. Its like that spoons article another CFer blogged about, or posted (hmm maybe ronnie posted it?)

Anywho, that's all. Sorry there was no part 2 to my last blog. ahha. See, the problem with only blogging once a month or once a week even, is there is always too much to write about. But if I blog daily then its the same boring stuff over and over? Weird and confusing I know. haha

Tuesday, June 1, 2010

Woah, I haven't posted for nearly a month! Geesh. Hey life happens, right? Well the past 2.5 weeks have been filled with Adventures. Kyle finished school and doesn't start research till tomorrow -- er-- today? So while he had all the free time in the day to spend with me, I still had work... or did I? Turns out Emily caught some upper respiratory infection bug deal thing, and I wanted to part of it - so I didn't have work for 2 weeks. Fine by me. =)

Kyle and I did a lot of fun things together. We went to the aquarium where we fell in love with the river otters - they were just giant versions of Duck Duck and Goose. Then we went to virginia beach with Lisa and her doggie (she also came to the aquarium with us). We went dumpster diving through William and Mary which is always fun! We snatched a really handy desk that we're using as a computer printer station. We got some great plastic drawers and a lamp, and kyle picked up about 10 vacuums thinking he could sell them on craigslist. *rolls eyes* needless to say he hasn't sold one yet.

We both got mountain bikes, so we biked to Colonial Williamsburg, which was nice, but then, I took kyle to the park I used to take the little boy I nannied for to... and it was awesome. It has a mountain bike trail that I didn't even know it had. its about 6 miles long through the woods, its pretty serious. We've done that twice. Although the second time was today and I was just emotionally a wreck. I have no idea why but every 10 minutes I was breaking down crying for some reason or another. I was very discouraged.

I think it had to do with the fact that we started at the entrance, as oppose to getting on an emergency entrance -- basically if you start at the entrance you must travel at least 3 miles to get to the first emergency entrance/exit. Well, there are 10 entrances so when we went the first time we started at entrance 10 and had to pass 9 , 8 , 7, 6, etc. to get to the end. I think I was freaking out knowing I had to go 3 miles to leave. Whereas before it wasn't a big deal because I could just leave at the next exit. Well anyways, I didn't have too much fun this time with all the crying I was doing. But I did have a good chuckle when Kyle flipped over his handle bars. He was fine, only a little scratch, but the way he sped around the corner all I heard was him going "THUD CRUNCH (because of the dead leaves)" followed by an UGHHHHH -- take this one slow!

I also crashed my bike into him. hehe. I swear my brakes weren't working when I tried to stop. And I smashed right into him about 30 seconds into the trail at the start. I cut his leg. oops. It bled too. That was the first time I cried, and asked to go back.

Oh I am a mess. I felt physically better than the first time we went but I was just so emotionally distraught that that made me feel physically ill too. Not a good combo. At one point I had a full out panic attack when we passed mile marker 3 and still no exit. Bring on the water works!

It was pretty embarrassing and I felt bad too because no way was this fun for kyle, but he was a champ and still stopped at every single hill so I could walk my bike up, or he'd go up the hill, park then come back down to walk my bike up for me. And since we were mountain biking -- the whole trail is one giant hill. Poor guy. I always feel like I'm holding him back. Like, if I Just didn't have CF, we would have had a great time! =\

Anyways, back to our pseudo vacation, i had a few doctor appointments sprinkled throughout the weeks, and I'm finally going to get my wisdom teeth out. =\ Fun? They're going to do them in the hospital so I can have a tune-up at the same time. Which is nice because I could probably use a good tune up by now. It's been almost 6 months since my last one! Which is kind of nice, because it shows that I had a rough patch but I'm still doing pretty well. But It kinda sucks because I know in march I wasn't feeling great, and then by april I was ready for a tune-up, but Cayston seems to be a wonderdrug and I've felt great on it since starting it. Shame I can't do any other meds with my Eflow. I'm sure I'd feel amazing if I could.

Oh, another fun thing we did was bowling on a saturday night. All you can bowl from 10pm -1 am. They had black lights and fun music, and disco balls. It was a ton of fun. We stayed the whole time! And it was only as expensive as going to the movies on saturday, so I think that might be a more frequent date night.

We also went to duke to visit Cal, for his 21st birthday and we went to a saloon. Hilarious. complete with mechanical bull. It was a lot of fun though. I love to dance and I miss dancing at clubs with girlfriends and what have you so being able to dance with some friends was nice.

Ah there's so much more to write about (see Beth, this is what happens when you don't blog for a month everything builds up!) but I need to go to bed, GASP it's 2 am? holy moly. I really gotta go.

Part 2 to come tomorrow.