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.

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.

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

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.

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.

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.