Sunday, August 31, 2008

Day in the LIfe

August 31, 2008

Wake up and do the morning routine: nebs, vest, computer time







The kids are off to Grandma and BopBop's for the day. Mommy is both sad and excited to see them go.



G is getting frisky now that we're alone







We take a shower (ooh la la), and I fix my hair for motorcycle riding.



G suggests we powder our thighs and butt so we don't get saddle sores (I don't think it was necesaary, but i like the bottle)



Breakfast first



This is why I think I am fat



On the road again



We ride into Amish country - I thought i had the horse and buggy behind me, but to no avail. Instead, my sunglasses



Visit Miss Lo, bike extraordinnaire, and give her a ride



She took our pic together lest this become a day in G's life due to a one man camera show



Then we head over to the smokiest bar in america to have a drink with my father-in-law. I swear I had tar coming out of my lungs at treatment time from this place. We didn't stay long.



We came home and took a snooze



Then headed over to my dad's to pick up the kids and have dinner



My whole family is there: granmda, cousins, bro from NYC and sister-in-lsw, aunts, unles, mom, dad, step-mom. It was nice



My boy helps his grandma pick some peaches from the peach tree before we leave



Nigh Nigh for babies

I take shot of my tired self



and end my day how it started, nebs, vest, computer (and a drink, afterall, tomorrow is a holiday!)

we never even said a word we just walked out and got on that bike

I woke up with a tickle in my lungs - that same feeling you get when you smoke realy good pot and it is literally cootchie-cooing your lungs. Yeah, I know I shouldn't know what that feels like, but it was honestly the only analogy that would work for what I felt this morning. Sorry. For the record, my smot poking days are over. Anyway, I skipped my treatmetns last night and so that's how I felt when I awoke. You should see the contents of my spit cup - yum!

I had more to say, but it eludes me this mornng. MY husband and I are going on a motorcycle ride today. There is actually a huge run that supports the MDA people this weekend. We have it each year and there are THOUSANDS on motorcycles. We're not going though as the last thing i want to do is idle on a 90 degree day amidst a bunch of other bikes. I think we should go to the beach or something equally romantic. We'll see. I found it is actually a little hard to breathe ont he highway once the bike goes over like 60mph. I had to position myself to get the wind out of my face so I could get a deep breathe. I would assume anyone would feel this way, but I don't know.

Maybe I will do a day-in-the-life today. We'll see.

Tuesday, August 26, 2008

I don't get angry when my mom smokes pot, hits the bottle then goes right to the rock

Yes, I'm drinking. Fuck yes, I am drinking. It's been that kind of day. I want to bitch about the whole damn day, most of all how my lungs actually hurt from this cold, even though it isn't actually in my lungs yet but hovering about causing trouble in my sinuses - I guess maybe it is my bronchial tubes that hurt from dripping snot...something effing hurts. But, I am going to stick to my original agenda.

Classes started yesterday. About 99% of the grad classes I have taken have been in the same room, on the third floor of the building that houses the English department.

For whatever the reason, elevators are eschewed on college campuses. I've been to three different colleges, so I can attest this to be pretty true across the country. Not being one to stand out, I take the stairs like everyone else (except the very old, the very fat, the wheelchair ridden and, well, probably some of the other lungers).

When I started my master's in 2005, which I think was the beginning of the decline that led me to the place that I am now with my Cf (since about 1996, I hadn't been doing much besides smoking pot and hanging out in bars), I had a very hard time with the stairs. It wasn't that I couldn't make it up them, but only that I was left at the top - sometimes even at the second floor, in the midst of a serious coughing fit. Generally, once I made it to the top, I could dip into the bathroom, cough cough cough and get to class with no one the wiser....that is, of course, unless I got caught going up the stairs with someone from class at the same time. This was a horrid thing and one I often tried to avoid. So I developed a way of breathing that would help me to not have a coughing fit (in through the nose, out through the mouth, blowing softly and doing this very slowly)or at least hold one off until I got into the safety of the bathroom.

The lovely part of this story is that since I have started doing the Vest and other treatments, I no long have coughing fits while I do the stairs. It is an amazing thing. I can talk to people while we walk up and not be afriad at all. I do get a bit short of breath at the top, but I have noticed so do a lot of people. So chalk one up for compliance.

The second item on my mind deals with feet. Or the lack thereof.

My son has a little boy on his football team who has no feet. He wears prosthesis (prostheses?)that attach to his shins and go into his shoes. Because of this, he isn't very fast and really isn't that great of a football player - understandably. When the kids have to run, he is always the last one.

Often, a few boys will go back for him and run in with him - and when he finishes, the team - and some of the parents - will clap. I remember this from when I was a swimmer as well. If some poor girl...perhaps she was handicapped in some way, sometimes she was just a reeeaaaly slow swimmer...if that girl was very far behind in a race, the spectators would clap her into her finish and cheer like mad when she touched the wall. I always used to give thanks that I was never that girl. And I wondered how this boy felt about the attention.

As a person who thwarted all CF-related attention, I actually felt sorry for him for that, not for his loss of feet, but for the fact that maybe, just maybe, he'd like people to forget he hasn't any feet. To just be treated like a normal, albeit slow, boy. So I didn't clap. I relaize that I can't project my own fears and desires as a Cf patient onto a little Indian boy with no feet, maybe he soaks up the attention and will go on to become a spokesman for the footless, but I do think I can empathize in a way that maybe not all of the clappers can.

Monday, August 25, 2008

the other half found me stumbling around all drunk on burgundy wine


I've got a cold. bah. It figures: classes starts tonight, I just finished a dose of abx, and we have a ton of upcoming plans....so of course, I should get sick.

My husband and I bought a motorcycle over the weekend. He had one when we first met but was in an accident on my 24th birthday which resulted in a broken hand for him and a totaled motorcycle. He took the insurance money from the bike and bought a boat with it (men and their toys). That boat was sold after being laid off of work for 9 months in 2003/4...but we've always talked about getting another bike. My brother-in-law rides - pretty seriously, as in takes long trips on the motorcycle - and we've been a bit green with envy. So we got one. I admit, I am actually a scardey pants about it. I say a little prayer before we leave and one of thanks when (if) I return home safely, but at the same time, having a motorcycle is fitting with my life's theme: do things that will probably kill me and then be grateful when they don't.

I guess I look at it sort of caustically. I am supposed to die from CF - wasn't that the idea when my genes strung themselves together? My ending was predetermined from conception, so perhaps I play fate a bit more than I should. Of course I've toned that down with the advent of my children, but there is still a part of me - the biker babe part- that likes to toy with the universe.

I can't say that this lifestyle I've chosen of spitting at CF has always been beneficial, certainly I've done damage along the way, but I also think how different I would be had I treated Cf differently all those years...and the bigger question: would my health really be any different at all or would I still have PFTS hovering at 70 and be lamenting my untoned belly?

Obviously I will never know the answers as I can't know if in fact Cf will win in the end or if some other unexpected twist will close out my chapters. I do know this: if I die from CF, I do not want it written that I "lost a long battle with CF." or anything remotely like that - in fact, I think I prefer not to give Cf its day in the spotlight at all. Instead, I think it should just say something like, "Shannon died as she lived - gone down in a blaze of light," or something equally deathly romantic.

Meanwhile though, while I'd like to stick around here on earth I will continue to say my prayers and give my thanks, sending my thoughts out to which ever diety is willing to bend an ear my way.

Friday, August 22, 2008

make new friends but keep the old one is silver and the other gold

Went to see the "Sex and the City" movie (don't bother. works in 30 minute segments, not so much as a 2.5 hour movie) with one of my oldest pals last night. Lo and I have been friends for 20 years this year, and for most of those years we have been thick as thieves. In fact we often joke that we're living the dream life that all little girls have wiith their best friends...we'll get married, live next door, our kids will be friends, etc. It's pretty much true for us. Of course we've meandered on our paths, occasionally straying a bit farther from one anothers' lives, me to NM, her to AZ, but never far in our hearts.

Anyway, Lo has always known about CF - mainly because when I was a kid my mom dutifully went to all my new friends' moms to explain Cf and enzymes, etc. She also did this with all my teachers up to the 7th grade when I finally begged her to leave it be (and my 6th grade teacher kindly took it upon herself one day when I was out of class due to a clinic appointment to infom the entire 6th grade class about Cf, thank you Mrs. B). But we never really talked about CF, Lo and I. I mean there were occasional things. In high school my cough used to make her laugh as she alwasy said it sounded like an old truck trying to start - or the time i had to buy her cigarettes because she didn't have her ID but had a coughing fit as I laid the carton down to be purchased (which we both found hilarious and which only furthered my fit). But I always kept Cf close and quiet, even with my best of friends.

Lately though, perhaps in the last year or so, as I have come into beginning to accept my Cf self and I have begun to take my treatments seriously, I have also become more open with Lo about CF. She started reading Cfhusband and FOP and even bought one of Q's Denial bags. She began asking questions and I began offereing information. I have never spoken this freely about CF with anyone in my life (other Cfers withstanding), ever.

Last night Lo said to me that she was so grateful that I was sharing this with her and allowing her into my life this way. She said that it was if she'd "found the missing puzzle piece" to who I am. I think I feel the same. As I begin to fit this huge chunk of myself back in place rather than continuing to hold it at arms length, I am finding that I am more at ease with myself. I feel better put together.

It is amazing what a toll it takes to hide a chronic illness. It wasn't that it was all that hard to hide, but it certainly wasn't overly easy either, being sly with enzymes and having such a bad case of asthma, bronchitis, sinus infections, and allergies all these years. It almost seems ridiculous as I type that list of ailments that I ever worried about beign outed about Cf. I think people were more worried about why I didn't ever "see a doctor for that cough."

I don't want to misrepresent here. I still don't use Cf as my conversation pieces yet. But Lo has aleviated some of my fears by being so accepting, so curious as to this part of who I am.

As she said last night, "I don't feel sorry for you. This is just the hand you've drawn. We all have our shit, I'm just glad I get to be a part of yours."

Good friend, that one.

Thursday, August 21, 2008

all your beauty will be stolen by a young girl in the night

This real-life stalking thing is giving me a headache. I know I am being vague right now but until I have a handle on what is going on, I am not ready to share too much just yet here on the internets.

Instead, I would like to talk about my big ole belleh. I decided it probably wasn't very compassionate to talk about being a fat ass in Cf chat, not when so many people have trouble maintaining a healthy weight, but here on La Vie I can talk about it.

I seriously have like an inner tube around my middle - which is clearly from poor eating habits...it's just so annoying to me that at this time last year I wore a size 0...103 lbs, granted I was too thin, I was at my lowest PFTs ever - but man, my belly was as flat as could be. SO nice. Now, a mere 10 months later I am close to 130lbs with a saggy bloated belly. bah. I now wear size 5 or 7. Holy freaking hell. (and before someone says, Oh! I would love to be a size 7, yaddi da, please remember I am talking overall form, the fact that I have been a 3 most of my life, and I am only 5'2")

My husband keeps saying he doesn't mind, that it just means I am healthy - blah blah. Fine and dandy, but I am not healthy - we all know belly weight is the most unhealthy kind of weight there is, plus my belly is constantly bloated. I look 5 months pregnant all the time. It literally hangs over my waist (ok, maybe it doesn't hang over, but it is clearly there ready to drop with the next Big Mac).

So I can't help but wonder why I gained almost 30 pounds in one year? Doesn't that seem amiss? And yet I am always bloated and gassy. Is it hormonal? Is it age? Is it enzymes? Bad eating habits? Not enough exercize? Two kids? Thyroid? A combination of all of the above?

Perhaps I should just get disciplined with diet and working out. Because I know the bag of cracker nuts and coca cola I had for breakfast were upwards of 1000 calories I didn't need.

Of course, don't forget old vanity peeking in. I want my flat belly. I don't want this extra 20 pounds and fat chicken neck that comes with it. Perhaps I am a bit sensitive to all this as I've now entered into my thirties....I don't know. All I know is my body image has been none too good lately and it is brining me down.

I guess instead of complaining I should probably do something, eh? Easier said than done, obvisouly.

Wednesday, August 20, 2008

not by the hair of my chinny chin chin

Too many creepy internet things have been happening lately - I can't help but wonder if they are not somehow in relation to the whole Gina-troll thing. I defended (albeit through anonymous postings, though signed as wanderlost) Q on that site, which in turn was linked to the Cf2 site which suddenly my blogs have gone from like maybe 10 views a day to upward of 50.... CREEPY. If you're reading this, please, post - or if you know me, email me and tell me- let me know who you are. I can't in good faith post stuff about my kids if a bunch of trolls are nosing around here.

Not to mention a few other wierd coincidences that happened out here IRL around this same time that are kinda bugging me out, which I will post about as soon as my internet sleuth lets me know things are cleared up. I have always trusted the people I have met online - I still do, though I have to admit I am more weary now - weary not just on trust - I feel that for the most part the people I interact with are on the up and up and because of they kind of person I am I am going to choose to continue to believe in each and everyone of them until proven differently, but after seeing the unkind things people have been capable of saying and thinking, it's hard to allow my life to be scrutinized in the public domain. I like blogging and I want to continue to do so...and honestly, despite those around me who say I am a fool, I don't mind being naive about the goodness of humanity. I just don't want to be proven wrong (again).

Saturday, August 16, 2008

now the weak must get strong they say oh! what a tribulation

I've delayed writing a post for a few days because I am just not sure what I want to say. I've certainly allowed myself to get swept up into recent events, mainly in defense of my friend. and while I am utterly intrigued by the unfolding events - the HOW and WHY of the whole thing, the fascinating mental illness that most likely masterminded things, I am more concerned with love.

I find that people are so quick to judge. So quick to assume the worst - everyone loves a scandal. I am no different I suppose, as I dutifully maneuver through my daily blogroll, scoping out good sites and snooping into others' lives. Yet in doing this, in forming an internet identity and a life separate online form the one I live out here, outside of the box, I have created a life complete with friends, meaningful interactions, and even love.

We all know that love can't just be turned on and off. Haven't you ever seen"The Crying Game?" (spoiler here) - even when our protaganist finds out his love is in fact a man, he can't just stop loving her, by then it is much too late. Of course feelings can change and love can fade, but often not as we try to direct it to. It seems the harder people rally against the effects if love, the stronger it reacts.

So while I watch this great drama unfolding, puitting the piece together like a Scooby mystery, I keep thinking about ove and how it affects those most directly involved, and because I keep reflecting on that feeling I can't help but feel extremely sad. Sad for a person who felt the need to create such a lie to find love and even sadder for my friend who loved so deeply that he put his own needs aside only to find out that the love has been misused and misdirected.

I hope my friend knows i send him much love in these hard days and that I have always believed in him, have seen his shining beauty, and in the words of one of my favorites, that I hope he shall "rise up singing."

Wednesday, August 13, 2008

one pill makes you larger and one pill makes you small

I've got a monstrous headache that, from experience, I think can only mean one thing: I am allergic to one of these antibiotics. I'm still very very itchy from what I thought was the sunburn, but I am now beginning to wonder...? The last two antibiotics I was on I turned out to be allergic to, though the hives came the day after the last dose. Friday morning I pop my last pill, so we shall see. Hives are not something I want to deal with, nor is this increased sensitivity to antibiotics.

Tuesday, August 12, 2008

Wish I Was Ocean Size



This is what you wind up looking like should you a) not apply adequate sunscreen or b) forget to sunscreen your legs and feet at seaworld when on antibiotics. Apparently those warning labels are on there for a reason. Though, in defense, I would have never apllied sunscreen to the tips of my ears or between my toes, and those spots were just as agitated as my legs and feet.



My kids and my li'l bro.

We had a good time, but it is good to be back, not to mention the plane ride home was suicide inducing.

Living by the ocean has always been my dream and everytime I visit an oceanic place I remember why. Despite the power and awe the ocean provides, I feel sooo good when I am in it; I need to remember that feeling sometimes.

Sunday, August 10, 2008

When you don't have words, you steal someone else's

God's Grief

Great parent
who must have started out
with such high hopes.
What magnitude of suffering,
the immensity of guilt,
the staggering despair.
A mind the size of the sun,
burning with longing,
a heart huge as a gray whale
breaching, streaming
seawater against the pale sky.
Man god or beast god,
god that breathes in every pleated leaf,
throat sac of frog, pinfeather and shaft--
god of plutonium and penicillin, drunk
sleeping on the subway grate,
god of Joan of Arc, god of Crazy Horse,
Lady Day, bringing us to our knees,
god of Houdini with hands
like a river, of Einstein, regret
running thick in his veins,
god of Stalin, god of Somoza,
god of the long march,
the Trail of Tears,
the trains,
god of Allende and god of Tookie,
the strawberry picker, fire in his back,
god of midnight, god of winter,
god of rouged children sold
with a week's lodging
and airfare to Thailand,
god in trouble, god at the end of his rope--
sleepless, helpless--
desperate god, frantic god, whale heart
lost in the shallows, beached
on the sand, parched, blistered, crushed
by gravity's massive weight.

- Ellen Bass

Saturday, August 9, 2008

sun is shining weather is sweet

I am pretty itchy and stingy from the burn I allowed myself to get at SeaWOrld via too much sun, abx, and not enough sunblock. The baby also had some sort of heat exhaustion/virus/ear infection going on - I have not yet determined which. Nevertheless I found time for a treatment, shopping, the beach, and a nice dinner out. I covered my head and ears with a bandana, got some huge sunglasses, and some zinc sunscreen, so that helped. But I look ridiculous in the pictures, which I will post when I get home.

More beach today. Which means I must lather myself in sunblock and put on my incognito garb.

Thursday, August 7, 2008

when I'm a walkin' I strut my stuff

bactrim+levaquin+too much sun at seaworld = one uncomfortable woman.

We are having fun here in CA. My son surfed today and appparently caught right on and rode a few waves in to shore. I however, opted for some stupid reason not to use sunscreen on my legs when we went to sea world and now have a horrible allergic sun reaction from my meds. What a genius. I need to do some treatments as I haven't done them since I got here (which means I have missed two treatments), and I am starting to feel it.

San Diego is nice though. Too bad I am afraid of the ocean. That isn't to mean I don't love it, but all I can think about is getting attacked by some creature. Nevertheless, I rode a few waves myself yesterday. Tomorrow, more beach, more good food, more drink. Not too shabby.

Monday, August 4, 2008

Just like Heaven

Well. huh. Two posts in one day.

Spoke with the Cf council lady. I am going to send out a letter with my email and see if I can't start an email chain for adults with Cf in our area. She said she tried to do it with the parents and got no response. figures.

She also said that the local United Way told her, "It would be a lot easier for us to give you money if children were dying from your disease." Ni-ice. Upward battle, no?

I did appreciate that she said when she meets new parents she does encourage them not to handicap their children with Cf and to treat them as normally as possible - and I offered to help talk to new parents. I think Cf will get you soon enough, why let your paretns enable it? Probably not what she wants me to say though. :)

Anyway, I am not feeling overly excited about the conversation. She seemed nice enough, but clearly, her office is dedicated mainly to fundraising, and from what I hear, fundraising needs sick children, not 31 year old moms.

And you know what else. Just one last thing and then I am going to take a nap, as i am sure my mood is a bit evident today. When you listen to the White Sox on the radio (670 The Score, thanks Huz) they do these little plugs where Waste Management donates to the CFF, you know, to help find the CURE. Does anyone know of a disease that has been cured? Not eradictaed due to vaccination, but rather cured. As in you have it, now you don't? How misleading is this. It annoys me to no end. The CURE. The Cure is a band....show me show me show me how you do that trick the one that makes me scream she said the one that makes me laugh she said and threw her arms around my head, show me how you do it and I promise that I promose that I'll run away with you....not a reasonable ending for CF. sorry.

Riders on the Storm

I called my clinic this morning about the labs I had drawn three weeks ago and of course they haven't seen them. The girl that answered the phone was a real dumbass too. This is why I hate the whole thing. You can't just get your doc on the phone, you have to jump through rings of fire just to leave a fricking message, and honestly, receptionists will have their own level of hell, just you wait and see. In fact, my doc isn't even in that office - it's just a satelite office that he frequents twice a month I guess when his bleeding heart strings make him take on the lungers clinic. That's mean, I gues he is a nice guy - the real problem is that it is a specialty clinic, which sees all kinds of kids (oh yes, and a few lone adults) with sad little illnesses and it is run by a NP who has to do all the work for the whole thing.

I asked if I could just email the NP instead of trying to play phone tag. I know other people in other clinics are on email with their docs, but the girl on the phone acted like I was asking about coming in for assisted sucide. EMAILOMFGNOWENEVERLETPATIENTSEMAILUSTHATWOULDBELIKETHESINOFALLSINS. stoopid bitch. I might need to switch clinics, this is too much for me.

And then, the lady from the CF chapter still hasn't called back. I think she tried once but then never responsded to my second call. Here is the thing, that is the kind of shit I cannot put up with. So I left her a salty little message as well. I know what I want to do. I definitely want to start an adult email chain to find out if other people are as frustrated with the clinic as I am. Before networking online, I never knew how other clincs were run, but now that I have some inkling, I know enough to know that mine is a disorganized germ infested maze of annoyance.

I am not an outright go-getter, I know this. I prefer to sit back and let other people run stuff - I don't care for the headaches; but I have no problem taking over when I learn that, in fact, things are being run by monkeys, and I think this may have to be the case here. That or I switch clinics and start driving 2.5 hours everytime i need to be seen. Which will it be? First, I try to man the ship. If we go down, I bail out and head for dry land.

Looks like we're going to have a killer storm here in a minute. sweet.

Sunday, August 3, 2008

calling out around the world

I was outed yesterday, by my own husband. Can you say AWKWARD?

We went up to a friend of mine's lake house, and took the kids out on the boat. We moored to go for a swim and I was trying to convince the huz that he should be the one to go in the water with the baby, as I am usually the one who does it. He replied with, "But you need the exercise." Our friends started laughing and saying that was "cold" and just jesting with G for what he'd said. I knew what he meant, but they clearly thought he meant it as if he were suggesting I was in bad shape (never mind that I am). So he said, "No, for her CF." Which of course they don't know about and quickly said, "Her what?" But, thank goodness, the manchild called our attention out toward the lake and the situation was diffussed - not withstanding the hairy eyeball I gave my husband.

I don't know how to better handle these situations. I find them terribly uncomfortable. The last thing I wanted to do was explain Cf on a boat in the middle of a fun, sunny day. I wish I could be comfortable enough in my own skin to just be matter-of-fact about it all, but I am not.

I've decided it's pretty pertinant that I go on abx before CA, especially if I am not going to take my vest. I don't want to, but only because I want to drink or imbibe in whatever other treats might come my way, which doesn't make sense, but hey - none of this shit makes any sense, does it?

Saturday, August 2, 2008

Dancin' Queen

I have a lot to say, a lot is on my mind right now, about Cf, compassion, ahimsa, and addiction....but I just don't feel in the mood to dredge back up some of the emotions I would need to investigate in order to write something worth reading. Instead, I will say a few choice words and post some pictures - pictures are always fun.

My husband and I went out to celebrate our anniversary last night. It is next week, but i will be in Ca visiting mon petit frere. We went to MI and ate a nice dinner where I drank a few too many margaritas (yum fresh mangoes and tequila - huzzah!), and then I took him to the casino. I am not much of a gambler but my husband enjoys it. I had to stop him from putting all our money on black - but we walked out of there $80 richer than when we went in - so dinner was, in essence, paid for.

On the CF tip, I called three weeks ago to my clinic to have labs done because I think I need to go on abx, got the results back first of this week - but haven't heard from the doc. So annoying. I am going to have to call myself and chances are they don't know where the labs are. Froostrating. I know what meds I want, it's just a matter of getting them. Honestly though I might wait another week because I don't want ot be on abx while in CA - which is another issue. 5 days with no vest adn a shitty travel neb? hmmm. I am NOT taking the vest with me. I just am not going to do it. I will swim or run or bike or do freaking 500 jumping jacks (like my dad used to make me do in the winter - bah!) but I will not pack that big thing and have to do it in my brother's one bedroom apt. thanks, but no. Denial lives on I guess. But I don't want to let things totally fall off, that would be just as bad. so....gotta figure that out. I do have a little flutter doo dad....anyhoo. I will have to make some good choices about that. onward christains soldiers.

les peektures, mes amies...

These are old, but I just got them. look! I really have friends!




drunky drunkerton


Finally, here is a sideways video that I can't figure out how to upright and in which you can hear me say "dancin'" and giggling, but I still think is cute.

video