Monday, November 23, 2009

I know you rider gonna miss me when I'm gone

So, this is the never ending story. Well, maybe not quite. Ever been to a Dead show? It is more like that. Only instead of Scarlet Fire>New Speedway Boogie>I Know You Rider (no, I doubt the Dead really played that set, but whatever) I get:

H1N1>oral levaquin+prednisone>IV levaqin+zosyn>major joint pain>sinus infection>oral cipro>more joint pain and sinus pain>acinetobacter>doxycycline.

Killer set list, dude.

My last cultures showed a possibility of acinetobacter, which, from my science homework, is not really great news. So I am now on doxycycline until my TOBI arrives (switched form colisitn) probably after Thanksgiving. ~le sigh

goodbye hurting-me-fluoroquinolone-cipro. hello laryngitis-TOBI.

More mundane and exciting news is that it is coming upon the Wednesday before Thanksgiving, which is quite honestly, my favorite holiday. Not Thanksgiving - the Wednesday before Thanksgiving. I hope the doxy doesn't screw up my groove for that night. I waxed my eyebrows and everything!

Thursday, November 19, 2009

beautiful people, you share the same backdoor that I do

I think my hormones are funky, because it sure does seem like I cry a lot these days.

But I was looking over my livejournal friends list and my FB friends list and I was realizing that the cystics are taking over.

Sometimes I am amazed at how far I have come in the last 5 years with this disease and I owe so much of it to all the CFers I have met over the years. I love you guys so much, I don't know if I often express how much the CF community means to me. Seems it is so easy to get wrapped up in my own business.

I laugh sometimes when I go to the CF website I frequent (CF2chat, yo) and here are all these beautiful people and we're talking about the color of our sputum and consistency of our crap, and it is lovely. I love it. Who else on earth can really understand this. Who else would even care?

I love that we are such a close and supportive community. I am so pleased to be part of it. I have never been the joining sort. I didn't really do clubs in high school (aside from the swim team, but that was kind of forced on me - all for the best of course), no sorority for me in college. I tend to hang back, be an observer. Even within the CF community, I think I hold back a bit, tend to wallflower myself sometimes. Yet I could not be happier or PROUDER to say I am a part of this group.

But along with this membership comes the heartache. I hurt for you when I read your blogs and know you're not doing well. So many of us are sick right now, so many are really, really sick. It's so damn unfair that the most wonderful people I have met have to be sick, hurting, unable to breathe. It pisses me off.

I have heard it said more than once, in more than one place, that cystics seem to be really attractive. God's funny joke, eh? Hey, here are these crappy lungs and messed up insides, but I will give you a great face to go with it. We're elfin, faeries. But I know the truth: this beauty is completely represenative of the person inside. Imperfect as the insides may be, I think your hearts and spirits are strong and sparkely and vibrant. Even better than the outsides.

So, my beautiful friends, I send my heart out to you all. I love you!

and I love the non-cystics who read this page as well. The fact that you come here and you care makes you every bit as beautiful to me. thank you.

Monday, November 16, 2009

take me to your leader

So. So. Um....

Clinic was last Friday. They did not have my bone density results (of course) and I had a massive fail on getting lab work done before, so not the most productive visit. I did feel very cared about though, something I have complained about with them before. They were quite concerned that I am not back to my old self post miss piggy. My doc ran something by me about viral myopathy which my google-fu fails me in finding good answers to that. I did get my labwork (blood, includng all vitamin levels and cholesterol (have not had that checked in YEARS)) and sputum done friday. had my bone density sent to them again and my last xray results as well, so if anyting is amiss, hopefully we will find it.

I am down to 118. I was 136.9 in March, so this is good, though of course everyone freaks out that I have been losing weight for 6 months. I am TRYING to people, even CFers can get big and can be vain. Anyway, I am Ok with 118, though I would not be sad if another 5 lbs or so slipped off - though I gotta say, I was glad I had some to spare during the big INFLUENZA debacle.

My PFTs were at 71, which is actually down from 74 and is also a week post IVS, which tells ME that something is still off, that or, as I suspected, H1N1 ate part of my lungs when it visited.

Last night when I nebbed and vested I had my first post IV welcome back mucoid PA moment, and today I swear fo' gawd I can feel it. I am tired and achey and just off. boo.

But I thik my 'tude is fixed, mostly. I am not in quite such a hole as I was, so that is good. I just want to "fix" whatever is wrong. I guess that prolly won't happen, not unless little green guys kidnap me and take me to their planet...or wait...I think I just spit a few of those guys out earlier. yum.

Wednesday, November 11, 2009

take these broken wings

My hives are much much better thanks to zantac. Who would have known an acid reflux med is also an antihistamine (it is an H2 blocker, as opposed to benadryl which is an H1 blocker, I have been edjumacated). So combined with the benadryl, I have been OK today. I still look lkinda red and funky but nothing is raised or itching too much today.

More importantly, I am posting about one of my LJ friends, Eva. Eva is 2 years post tx and is now in chronic rejection. I think she is down into the teens for her lung function. Tonight she is going into the hospital because she is having too much trouble breathing. I am praying for her tonight.

i think her Lj journal is public if you're not familair with her. She was also in the documentary "65_redroses" which will be seen on Canadian TV on November 16th.

I've been feeling really defeated by CF lately, physically and emotionally, personally and extrinsically. I just want to fix us all.

Tuesday, November 10, 2009

itchy and scratchy

Hives, day 3

Yeah. I am not suppossed to complain. right? I am now taking zantac, which is an H2 blocker and benadryl which is an H1 blocker. So far, not stellar results.
No more penicillians for me. I can't imagine this getting better with consecutive tries. And from what I read, desensitation might not work with delayed allergic reactions....which means, perhaps, I am screwed. c'est la vie custique. (vie de merde, no?)

my hands are swollen like little red balloons, my neck looks like I have ringworm, and my face looks like that guy on "Something About Mary" you know which one I mean, right?

PLease go away, hives.

Sunday, November 8, 2009

sitting here in limbo, like a bird without a song

So, you know, when it rains, it pours.

I have hives, I assume from the zosyn - I also got hives from augmetnin and ceftazadime(dine?), so I assume this is a penicillian thing.

Also, I am low on creon, In fact my purse stash ran out and last night we were at a birthday party when I realized I didn't have any and there were none in my husband's truck. So I made the stupid decision to go ahead and eat a hamburger without. I hardly ever eat without enzymes. Today I remember why.

I have only 8 creaon left at home. So I called in a refill.

Upon pick-up, the pharamcy told me my creon rx was declined due to price by my insurance. They have declined it before, often saying I am getting "too many." Usually I and lightly bitch and they fix it. I always assumed it was because I was trying to refill before my 30 days wre up, as is sometimes the case.

Anyway, when I called, the gal on the phone said it had to go to administrative review and would take 24-48 business hours to be resolved.

Dear readers, I have never "cussed out" a person in my life. In fact, I am very kind to the poor fools who answer phones at these kind of places because I know they are just little inefficent cogs in what is usually a square wheel. But I just came unglued. I was in the car at the Walgreens parking lot scratching my hives, woth a stomach ache and now crying and I think I said something to the effect that I had to have my medcine immediately. I could not fucking wait 48 hours and that by doing so they were inadvertantly trying to kill me and could expect to have a huge lawsuit on their hands, etc. I am kind of embarrassecd now.

But the woman on the othe end was kind and she kept her cool and apologized (and so did I) and she explained that since my rx was over $1500 it required an adminstrative override. I have only been taking this many creon for about a year now and I guess on business days sometimes Walgreens handles this for me, which is why this denial was happening sometimes and not others. I ended up getting a 24 hour supply from Walgreens. Nice or not, that rx company can bite my hived up ass.

So world, while I did walk about a mile yesterday and today and the weather has been superb, my nerves are a bit on edge and my tears are flowing easily. There is no where to go but up.

Tuesday, November 3, 2009

it's easy

My lungs are finally running pretty clear streams whilst vesting, sweet. I have a cold and my one ear feels like I might have gone deaf in it, but my mood is OK.

I think that I really need to be grateful for where I am - I am home, I am relatvely healthy. H1N1 is eating the CF community up, so I really need to appreciate where I am and what I have. I keep fearing that this illness will have been the turning point in my health, but I guess, if it is, it is. I can't be too picky when it could have been so much worse...people are vented and dying from this horrid thing, Cfers and nonmutated folk alike, and I made it out, not unscathed, but OK. I have to send out prayers to everyone who is battling this thing (hell, prayers for everyone all around).

The home nurse is coming today to do a dressing change on my PICC. She sounded like a twit on the phone, and you know how I feel about pedantic twit nurses. I know there are come Cfers out there who are nurses...I know there are good nurses. This might be an excellent nurse with bad phone manners. I think Cfers need to try to rule the world, honestly. Then, everywhere we go, people will "get it" and not be so effing annoying.

ah, but I must keep love in my heart.

Twice in the last week I have seen my husband extract locked-in keys from our cars. Small things like that are so sexy. He is back on my good side (for now) having been trying to care for me. Love. Love is all you need.

Sunday, November 1, 2009

temptation eyes

My husband allowed me to loll around in bed until 4 o'clock. Seriously. I read, dozed, watched "17 Again" (cried in that movie, why? Because being sick and laying in bed is nice, but a bit depressing). Today I was legitimately lazy.

I am still exahusted though, having been up at 3 and 4 for unrelated items and then at 5 and 6 for meds and again 7:30 to flush lines at 8:30 when all the kids got up...and no sleep 'til (Brooklyn) midnight again tonight. Friday can't come quick enough. I've eaten so much Halloween candy my gums and tongue are raw, but i had this epiphany today. Time to get off my ass and start getting active again. I've been sick for a month, but it is time to move on. I think my attitude will make a big difference in things, so....hopefully I sleep well tonight and can be bright eyed and bushy tailed for tomorrow.

even make-up isn't helping with the old hag look

sick eyes