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.

Stranger like Me

I will try to keep this organized?

Health:

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.

House:

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

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.

Oh Mondays

Well, I started off the day better than usual, meaning, I actually woke up at a reasonable hour. My alarm went off at 9:33 am and I woke up, relaxed and waited until about 10 to finally get out. (I dread actually getting out of bed, waking up is fine, but getting up and moving is the hard part -- coughing attack ensue!)

I ate breakfast, was able to keep that down along with my megace. Caught up on my blogs, and of course facebook. Watched a few things on youtube, and then I was ready to start the day. . . Almost.

Showered, put on some makeup, kyle came home, ate a little mac n cheese. Then NOTHING. I didn't have to go to work because Emily is sick. cool. But again, I didn't do anything. I can't play the piano because kyle is studying. I didn't feel like going anywhere by myself (not that I have places to go). So basically I just sat home and surfed the web all day. I read some parenting columns (why, no clue, just maybe brainstorming idea for jeanette...) read some recipes, thought about making marsala chicken -- realized I didn't have a wine cork opener, decided against marsala chicken, read one of my recipe books, found an easy one, went to the store, bought 3 ingredients, went home, made dinner, ate it, cleaned it up, and now I'm back on the computer with nothing to do.

Oh my life, why are you so boring all of a sudden? Why can't I find some direction to take you in?? GRrrrr.That's all for now. Nothing creative, nothing cool, nothing new. Just the same old boring stuff.

The end.

Nothing New

Nothing new is happening here. It got cool today. It was only 71 degrees --which, yes I know, is not 'cool' or 'cold' as I discribed it to my dad today, hehehe....but compared with the 94+ degree days we've been having, 71 seemed chilly.

It was mothers day today, made my mom a homemade card with a poem inside. I made the same card for Kyle to give to his mom. Sneaky sneaky. Just don't tell them that! ;-) I also mailed my mom some GREAT smelling soaps (coconut, one of our favorites) and these useful socks designed to be worn in pumps. On the days its too hot to wear hose, but she needs to wear something on her feet. Perfect solution.

Julie is double listing at cleaveland clinic. Phew. But she sent everyone an email saying that Boston now has her on the "Hot list" which means, that they've expanded her critera for lungs. --Meaning, if the lungs have a bruise on them, they will call her, as before they wouldn't.

I don't know. Something just doesn't sit right with me about this. If they weren't going to call her with those types of lungs before.... (because they weren't up to par) why are they going to now? I want her to get the best lungs she can! Not some beat up pair that 'might' fair okay. Grrrrr. I think it has something to do with her double listing, they don't want her to screw up their UNOS listings/ratings or something silly like that. But this is LIFE that you are talking about. If you start cutting corners.... I don't really wanna think about that.

Anyways, that's about it over here. Kyle got back from his Uncles funeral, and now is taking his rescheduled exams this week. So he's all stressed out like usual. And I need to go food shopping asap. tomorrow definitely!

The end - for now.

Livid

I am livid. LIVID. I cannot believe the excuses this woman makes for her children. Back story is needed here.

Allen decided one week in march that he just wasn't going to school because "he was sick" -- for a whole week? Bullshit. He didn't even have one symptom of being sick, the only thing he was, was tired. That my friends, comes from his mother letting him stay up past midnight on weekdays -- sorry SCHOOL days.

When he got his makeup work the next week, he decided he wasn't going to do any of that either. I reminded, and reminded, and bullied, but nothing. I told his mother "You know, Allen really has a lot of makeup work to do, including a 10 page science project" and left it at that and encouraged him nonetheless to do sheet by sheet of his makeup work.

Well a month has now passed and I was furious that he STILL hadn't bothered to work on the critter project -- and even more so that he lost the sheet. Well that was monday, when I told him "Tomorrow you will get another sheet and we will do it after school, do you understand?" Well, he found the sheet on monday. Didn't bother to do a single thing, and who found it? Jeanette. This kills me. She found it and she just let him not do it. Knowing full well it was due APRIL 2nd!

Well yesterday, I had had it, and made him do his project. This was his answer "Well, I'll just do two pages of it" (that was the deal we had 2 weeks ago, we'll do 2 pages a day till its done) Not anymore. I made him work on it till I left. (Only an hour. And he finished it! So quick and would have been quicker if he wasn't being a snooty little jerk about it: examples: "Can I just do it in my head? (rough draft --NO) Can I just do a real animal instead of making one up? (Not the project, NO) Can I research and look up online a hippo? (Why?...) I want to make my animal like a hippo (then use what you know about hippos and go from there). "

Excuse after excuse after excuse. That's all this kid does. I know he was upset, because it lookd like he was going to cry every 5 minutes, but hey sometimes kids need to realize, that yes make up work comes BEFORE video games. So next time you want to play video games for a week at home by yourself, be prepared for the consequences. That's all. That's the simple lesson I want him to learn.

Well get this, Jeanette texts me "Hey Beth, just want to let you know Allen and I will finish his critter project over the weekend :) " ---- are you freakin' kidding me? I texted her right back, and to be honest I was a little nasty. "Is there a specific reason why the project will be put off till the weekend? It was due over a month ago, and if he has time left w/me shouldn't he finish it?" (text 1) "I'm just curious because I have a feeling he complained that I was 'so mean' yesterday when I made him work on it"

No response. I tried to call her first. Nothing. Alright Jeanette if that's the way you want it fine by me. I will stop giving you sympathy when you complain that your kids don't listen, when you complain that all he does is play that video game, or they have attitude, or they throw a tantrum when they don't get what they want--- you know who throws tantrums Jeanette? Two year olds. Toddlers. You have two teenage Toddlers. They eat candy before dinner, they expect you to do everything and anything, they don't know the first thing about responsibility, and goodness, watch out if you get stern with them - bring on the waterworks!

Jeanette, all you're doing by letting allen push the project off AGAIN, by complaining to you that I was 'mean' is showing him that you are a pushover. He now has control over this situation; over you! I hope you know what you're getting into. And I hope you're praying for your kids everyday, because you are leading them down a terrible path. Watch out when Emily starts driving, who knows what kind of drugs she'll get into. (Oh yes J I said DRUGS, she was talking about alcohol the other day with Amelia, lovely isn't it? 8th grade and wanting alcohol)

And if you think Allen doesn't listen now, good luck later. It will only get worse. Stop making stupid excuses and set some boundaries. You are their mother, so you should start acting like it. SOON.

Phew. And now I need to go to 'work' where I refuse to do anything. Allen can do whatever he pleases I will occupy myself and just make sure people don't die.

Or you know what, I will make you feel like a bad person J. Evil, yes, but sometimes you need a slap in the face. I will clean your messy house for you today so when you come home you will feel like a jerk.

And if you come home, and confront me about my message, be ready to cry because I will dish it out honestly and completely. You need a good cold dose of reality, because you're still living in this fantasy world of yours. Well wake up Jeanette, wake up.

The end.

New Windows, Rise and Shine!

After going to bed around 3 am. Kyle and I both rose from the dead around 7:15-7:30ish. If you count that is about 4 hours of sleep, eek! Not too healthy, but sometimes you can't help it.

the reason I was dragged out before noon, was the fact that we are getting new windows installed today. FUN! My poor ferret babies and their poor ears. Not only do they have to be couped up with everyone running around them, but their little ears are sensitive to the high squeals/pitch of the drills, and the creaking noises made by using a crowbar to remove the old windows.

Speaking of which, all 4 windows were removed, and the apartment has never been breezier! haha go figure, with these huge HOLES in the walls. But what boggled my mind, is that they left these holes for quite a while, while they took out the other windows in other apartments. All this time with huge gaping holes in my walls, let a lot of pollen, dust, not to mention BUGS in my house. AND the window ripping down, caused dry wall to be distributed in the air lovely, and cover the carpet/futon/all my personal belongings -- great! And to think we just cleaned up yesterday. HAHAHA jokes on us. oh well. The new windows look nice at least. Hopefully they'll save us some heating/cooling bills. =)

They are very nice white vinyl windows and they are finishing the final touches, the edging. Phew and then I can nap. I can't nap because I don't want to even close my eyes with 3 strange, overweight men in my house, no thank you!

That's all for now.

PS Kyle is being more sensitive about meds lately. He even went and picked up allegra!