so to all you kids all across the land, take it from me, parents just don't understand

Last night while I was nebbing I thought I had some hemo. Turns out, it was just the old sinus cavity.

Some times it is still hard - as proactive and aware as I try to be - to grasp how Cf could affect me...will probably affect me in the future. I know I talk about this a lot, but I grapple with it often. Sort of this fear/denial thing. I gues it's true with anything - smokers who don't quit because they feel fine, people with high cholesterol who still eat brats and cheeseburgers all the time - gotta have a heart attack to "get it." But I don't want that to be me, so I try very hard to listen and learn from others who have progressed farther with this disease, but still, that little piece of me insists it "won't be me."

The other day my husband was talking about my son and he said, "when he is in his twenties and you're dead and gone..." and I was like SAY WHAT? I got really pissed off about it. I mean, my son will be ten this year, and I'd like to think I have a few good years left in me. It made me wonder though, I complain that my husband doesn't really understand or care to learn about Cf all that much, so what exactly he is thinking?! (too bad he can't good life insurance on me - ha!) (and, in his defense, his mom died when he was 21 and he said he was just thinking about his own situation when he spoke, which is probably true, but still, what a foot in the mouth!)

Finally. Parents. I decided to back out of discussions on the forum, but i wanted to talk about what I think about CF parents. I have two of them, you know. and they did for me the best they could.

As a kid though, i really did not want them involved in my CF care. In fact, at age 12 I stopped letting my mother come in with me on clinic appointments and by 16 she stopped coming with me at all. I know she did not know how to handle Cf, but I appreciate that she trusted in me to take care of myself. Despite some major deviations from that path (may my mother never know!), I think I've done OK.

Still. I think CF parents are a wonderful resource, a caring group of individuals, certainly our adovocates and biggest fundraisers....but, as with any other life experience, no matter how they love us, they CAN NOT KNOW LIFE WITH CF AS WE DO. This doesn't reduce their experience as paretns or their role in the CF culture, it only separates parents and patients. This is not a bad thing. I would rather be a CFer than a Cf parent any day, as I know the way I feel for my kids, and I would never want to see thenm suffer with a disease such as this.

Nevertheless, it irks me that my mom or someone else's mom or dad or sibling or whatever, would ever dare to insinuate that they can know life with this disease or even begin to feel my pain. My uncle stated it beautifully (he has Cf and is 13 years post TX) when he was in town over Thanksgiving and told my mother, "You don't hurt for her CF the way she does." So true. Yes, I feel pain when my children are hurt, but their experience is not my own. My mother feels guilty I have Cf, she feels sad my life might be shortened, she worries when I am sick...but Cf is mine and mine alone. I appreciate that she tries to understand that.

sleep with one eye open

1) We had to put our dog to sleep today. She had cancer. It was actually my husband's dog from before me, and to be honest, I didn't like her all that well - but it was still sad. RIP, Payton.

2) I know I am not the only person who sometimes HATES vesting and nebs - holla if you hear me!

3) Tomorrow is my boy's last day of school - which will make me the mother of a FOURTH GRADER. How did this happpen. Praise Jah, I am still here to see it.

4) It also means I am going to get to start sleeping in

5) Nasocort makes everything smell like vomit, but my ENT said my sinuses look great. Took long enough, shoooot.

6) It's depressing when these rejections come in from these journals.

7) Have you seen that commercial for Burger KIng that is all "I like square butts and I cannot lie?" HORRID SHIT ON THE TELLY

8) Exercize? What's that?

9) What is the sound of one hand clapping?

10) Do you own one of those P.O.W./M.I.A. shirts?

I am a vampire I am a vampire I have lost my fangs

This post probably won't go anywhere as I don't have a whole lot of interest to actually say.

My sinus are (sort of) getting better, but what I think it boils down to is that I need an antibiotic. My doc hasn't agreed with me yet, but I am working on him. I could bypass him and get one from my stepmom instead, but I like him so I want to work with him and not alienate his judgement. But, I go back thursday and I'm pretty sure I am gonna at leasttalk him into some cipro. The pain is just a plain old sinus headache now though, not the horrid pain I was feeling before, so I guess that's good.

I'm embarrassed to say I've been busy reading lately and not hanging out online so much. Reading you say, why, what a great past time (pass time?)! but the thing is, I have been reading the Twilight series (ducks head in embarrassment). I think what I need in my life is simply a teenaged vampire to spice things right up. Sigh. Maybe I just need to be 17 again, first love...

nah.

I have not swam in over a month now. I think I will go back to it tomorrow, but my motivation is nil. I ran a mile (don't be fooled, I ran/walked) last week, but that was my first exercize foray since surgery. I HAVE to get back into the swing of things, I was doing so well with my regime. I didn't lose a pound, but I felt good. I've been trying to count calories and stuff to drop a few (my grandma even commented on me gaining weight. bah), but being a CFer I have NEVER watched what I ate and so it is really hard to be disciplined about NOT eating. I even bought some hoodia. (that's embarrassing to admit too!)

I'm ready for summer.

ogres have layers

ENT again yesterday. He said he has never had a patient have so much pain. So glad I get to be the one. But he said the left sife of my head looks great, nice and clear - but the right side...well, he could not even see in there until he pulled out a HUGE mucous plug and then he sucked a whole bunch more icky hard green crap put. He really thinks my pain is related simply to congested sinuses and his theory ia that I have a thin crusty layer of mucous over the tissue that is keeping it from healing properly from the surgery and that continued suction and washing should help. I'm not that optimistic though and I pushed that I can call Monday if I have no improvement and get another scan. That being said, I tentatively want to say I actually do feel a little better today. KNOCK ON WOOD PUHLEAZ.

I am sooooo effing tired of this.

I've decided to change my attitude though. I need to really believe there is an end to this as my whole mental framework has been poor lately. While I fully understand how chronic pain can suck you down, I also think I have been able to watch myself in a sort of removed way and I can see how my own attitude has been part of the problem as well, so I am really trying to stay happy and not let this get me down.

I also need to wean off the narcotics. I don't think they have helped the situation either. I mean, they help the pain, but not my lethargy and bad attitude.

So. off to do something fun and enlightning today.

Fare thee well, ogre.

(sorry, we're watching Shrek for the 10000th time)

Life right now is a bit of a medical cluster fuck.

I lost my secondary insurance because my husband made too much money last year. This means that the Colisitn I was just prescribed is going to cost us $400 a month -which clearly means that I am not oging to be using it anymore.

The ENT wants to do balloon sinuplasty on my head. and fix my septum. His cost alone is $13,000 - from that, I gather, the whole deal will cost us $2000 before insurance kicks in. That might not be that big of a deal off hand, but I have got to get a job and until I do we really are living pay check to paycheck with not another $50-$100 a month to be paying off a $2000 medical bill.

So, it all sucks.

And my family is all pressuring me, "you HAVE to do this surgery..." and it's like, no, I don't. I probably should, but I don't HAVE to do a goddamn thing.

So it looks like I'm back to teaching this fall, if I can get a job, so that I can get insurance. The school corp here has GREAT insurance, and if we have both then we'll be fine. But that is still 6 months from now...so I dunno. Plus, really, I was hoping ot be able to use this master's degree of mine to teach as an adjunct somewhere - but that won't give me insurance, so for now that is all on hold and it's back to the little snotheads.

I am pretty open about financial stuff, I mean, it's just money, and I see no real reason to hide when I have it or when I don't, though I know I have been making my family uncomfortable talking about not having any right now. The thing is, I think that money always seems to come and go in cycles, so while it' s slim pickings right now, it will come around again.

So right now I am pretty pissy with the whole effing thing, dealing with insurance and money and blady blady blah.


so, as I always say:
moneyisnotrealmoneyisnotrealmoneyisnotrealmoneyisnotrealmoneyisnotrealmoneyisnotrealmoneyisnotreal

cuz its all in my head and i think about it over and over again

As I predicted, I got my CT report in the mail before el doctor has called. It is so annoying. I am trying to read this thing and while I get the basics, most the medical jargon is beyond me - wikipedia can only do so much.

Basically:
cylindrical and saccular bronchiectasis - I don't really get this, but I understand bronchectasis
lung abnormalities greatest in upper lobes, minimal disease in lower lobes (this has been said on my xrays for as long as I can remember)

here is one that I don't understand: "there are some generous sized bronchiolar artery collaterals noted in the mediastinum posterior to the distal trachea"

on to the sinuses. Sinusitis with a deviated septum and no polyps. I've never had polyps so this is not a big surprize either. Basically what I think the guys is saying is I have got some fucking INFECTED ass sinuses (not sure, but that is what it sounds like - everything is "opacicity this and opacicity that.")

So any MDs out there wanna help me dissect this further, be my guest.

As for the diviated septum. I'm not sure about that - some say surgery. I am not too into that idea but if it would reduce sinus infections, I might be talked into it. I am thinking we are looking at IVs at least.

You guys that read this boring blog are the best. I promise once my head stops hurting to write something mor exciting than wah wah wah Cf sucks - though, who could ask for a better audience??

no thank you please it only makes me sneeze and then it makes it hard to find the door

So now 2 weeks later I think I finally have some relief from my headache. It is not gone, but it is better (KNOCK ON WOOD MO' FO') - I honestly think it might have been the azithromycin. I stopped taking it and the headache went away and then I took it again and it was back and then I stopped again. The only reason I think this is because for years I used to complain that Augmentin gave me a headache and everyone blew me off - and then the last time I took it - wah lah, horrid hives all over - so I always figured the headache was like a milder allergic reaction. The headache I have had these past 2 weeks was not the same kind of headache, but I can't completely disregard the corrleation.

I had my CT on Thursday though - have not heard back about it of course, but they did my sinuses and chest (chest just for a baseline as I have not had an xray in like 5 years and never a CT). I had a mild allergic reaction to the contrast dye - I could not stop sneezing. I sneezed like 50 times in a row and freaked out the techs! But i was fine after that.

All of a sudden it seems like my body is just rebelling against these meds, I swear. I could tolerate everything before and now it seems so many things don't sit well with me.

Anyway, it is nice to be feeling a bit better at long last and I hope this headache stays the fuck away.

Any bets on how long it takes my clinic to get back to me on the CT stuff? My bet says I get the report at my house before they call me.