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


Gem said...

Love the new blog background!!! Yay for health stuff!! I always wear jeans and a hoody for clinic because they weigh a ton! haha!! Hope you get on well with the creon! Marinol sounds really weird though! Don't think I'd like those effects!! haha! The spoons theory is brilliant! Hope you're not too worn out!! Hope you're ok lovely!!! xxx

Gem said...

I just read your profile thing and one useful part of CF is that you met me on here!! :D although not conviced that's always a positive for you! haha!! I'll drop you an e-mail sooooon! xxx