it's outrageous and insane these crazy prices in PORT of Spain

Home from an uneventful port surgery. Uneventful as in everything went as planned, no snafus.

I had my surgery at the Allied Physician surgery center in town of which my step mom is a share owner and practices at frequently. She had recommended both the surgeon and anesthesiologist to me and was present in scrubs during my surgery. While I was in the waiting room before she arrived I had been watching one of the nurses, or nurses aides maybe, an older, heavy set lady who seemed none to happy to be there. She had called two patients back before me without much of smile or personality at all, she even seemed a little annoyed about it. I'd thought to myself that I hoped she wasn't my nurse. My step mom arrived shortly after and the I was called back by, lo and behold, grump lady. Except suddenly she wasn't grumpy anymore - quite chipper and soooo happy to see me. I told my step mom she was going to have to come with me to all my medical stuff. lol.

Anyway. From there I had a vanc drip hooked up and I opted to go ahead and get the general. I was told it was my choice, i could do the conscious sedation or twilight or whatever it was called or just go under and I decided I wanted to be aware of nothing. So I got a beautiful combo of versed and fentanyl (how pleasant that was!) and then I was out.

I woke very confused and was told that I kept asking where my daughter was and was afraid I had left her home alone.

I got a pediatric sized "smart port" which can be used for draws and contrast as well as meds, slightly above my right breast.

and that was all they wrote.

I have to say that post op fentanyl wasn't cutting it for me, which is wierd. they offered me demerol, but I declined that opting for more fent. After 150mg of fent and 10mg of percocet I felt pretty good. Tolerance, maybe? I dunno.

Now I am slightly tender. It hurts a bit to bend over or raise my arm up but just chilling out (or typing this) is OK. The worst is my throat. My throat is on fire and despite all the narcotics, I just can't shake it. I think throat pain is one of the worst types of pain and i have little tolerance for it. But...whatcha gonna do?

So, all in all things went well and despite my uncertainty in the wee hours of last night's morning I feel glad that i did this. The port is quite small and I think it will be pretty unnoticable. I look forward to the ease it should give me with meds. I think it will help my compliance with getting IVs when IVs are the best thing. At least that was my intention.

So, I present to you my ported up chest.

'cause the truth you might be running from is so small

I'm awake. Insomnia, I guess. Nerves more likley. My port surgery is in about eight hours and I really didn't think I was all that worried about it. And maybe I'm not, but it is just one more factor on an already mounting pile of issues that are causing me anxiety.

My husband has been laid off of work for a month - he was supposed to go back tomorrow, but now they tell himn Sept. 10. I have a house that I rent that I was trying to sell while the tenants stayed on for the duration of their lease and then month-to-month. But they decided to leave so I needed to find a new renter ASAP, because even when he is working, our income would be hard pressed to afford two mortgages. I did find a renter and my fingers are crossed she is a good choice. I hope I hope.

Anyway, then we have this mountain of medical bills that never seems to end. My kids both start at new schools this fall, my husband and I are working uber hard at our marriage and so here I am awake. I normally would pop an ambien and have a cocktail but I can't eat or drink anything and don't think an ambien is a good idea before sedation - though I really don't know if that would matter. I did eat one triscuit and a pepperocini. cheater. and I won't tell that I did - it's hard being this rebellious.

EDIT

I am finishing this post now because my computer went haywire last night and I did finally fall asleep about 4. I head to the surgery center at 10. SO I leave you with one last picture of my virgin chest.




boob shot. ha ha ha. I'm delerious with fatigue! Wish me luck.

wouldn't it be a shame if we were all the same

Dear "normal" world at large,

I've been toying with the idea of letting this blog be public. I mean, yes, it is already a public blog, anyone can read it (as proven by the statcounter index that tells me I seem to have lots of readers in India - WTF?). But most people don't know i keep this blog unless a) they have CF or know someone with CF and b) are a good enough friend that they have heard me talk about the CF life enough to find this and read it themselves and c) my mom, who read the whole thing after locating it and then promised never to read it again. sorry ma.

I have been blogging online since before blogging was called blogging. But always in these wierd niche communities: body modification, livejournal (which I still have but that badboy is under lock and key) and CF. Never anything I really put out there. You had to know me, know my niche, and then stumble across the blog.

So if I linked this to FB and made it as public as public can be in my world (250 Fb friends, 3 real ones), I would have to make a big confession:

I have cystic fibrosis.

There, I said it. So that means the cold you thought I had for the past thiry years, or my bad asthma, or the fact that i simply smoked way too much weed, all those things that made me cough until my face turded red, made me stop what I was doing, made me pee my pants when I laughed because that laugh turned to a cough - all that had an underlying reason: I have this wracked up set of lungs. and i was an A-1 expert at hiding that from you.

Yes, I know, some of you already knew this. You went to elementary school with me and my mom told your mom, or our stupid 6th grade teacher told the whole class when I went to the doctor once. or maybe we swam together and you knew from that. Or maybe that dumb kid who spread around the fact that I had "cerebral palsy" got to you. Whatever the reason, some of you knew.

some of you did not. and so you probably wondered but never asked. or maybe now you think back and say A HA! It all makes sense now.

But I tell you, if you didn't know, it is because I didn't want you to.

I allowed myself to be defined by anything BUT CF. You may have known me by many other labels but not by ths one. I don't want it to define me now, but I have come to accept that it is who I am. I don't want to hide anymore because I am no longer worried about what the world thinks of me.

I actually have come to create an identity for myself within my disease. It is who I am. An important person taught me that, the idea of self acceptance, and I've muddled over his words for a long time.

I don't want you to understand or feel sorry for me, and for god's sake don't tell me about your sister's cousin's boyfriend's nephew who died from it. I already know the statistics. I know what I am facing. I know the reality of the disease: the good, the bad and the ugly. I know it in a way you never will.

Please, feel free to ask questions, to educate yourself. But don't feel sorry for me. and don't tell me what I should and should not do. Don't take a balloon away from me and assume i can't blow it up, or carry something for me or tell me I probably shouldn't run in the heat. Don't freak out if someone lights a cigarette in my presence. I can take care of myself, I know my own limitations. I'm not invalid and while I know you care and mean well, it is demeaning to me for you to attempt to assume you know how to help me. If I need it, I will ask. I've lived the same life you have, just as fun, just as wild, and just as independent. and I keep living that life.

Once you get to know the CF crowd you can begin to understand that I am just a small sampling of the amazing people who live with this disease everyday. And some of us tell you about it and some of us don't. We choose not to because of mostly social reasons: stigmas, association as "other" or outcast, because being different is only accpetable if includes green hair and tattoos, not if it includes a shortened life span. Because your well meaning gestures are often embarrassing and bring attnetion to us when we least want it.

The best thing I ever did for myself was become ingrained in the Cf culture. I would have been so much happier to have shared my disease with you when I was younger if I had found connectiveness like i have it now. I would have cared less about what you thought and more about what was good for me.

It has taken me thirty three years to begin to get to the point of self acceptance, and it might take me another thirty to actually link this blog to something public.


In the meantime, I keep living and learning. and living. and living. you got that?

walk a mile in my shoes

Long over due for a post, c'est vrai.

so, here is the skinny. some Cf related, some not.

I had clinic back in July and that was uneventful. I think my FEV1 was in the upper 60s, so pretty much normal. I had a great colistin month in July where it actually seemed to be working. Some months it doesn't seem like it does much, but I felt pretty good in July. Now it is August 7th (my anniversay, no less - 6 years!) and I am already back to camo green wads. go figure.

I also had my consult for my port surgery (which really was sort of a waste of my time). My main concerns were placement and the fact that if my PICCS are not placed properly in my atrium (right?) I can ~feel~ them - this is hard to explain if you haven't felt a PICC from the inside, but it is a quite uncomfortable feeling. I've had to have them repositioned each time I've had them, so I didn't want to have to undergo port surgery twice if it wasn't place correctly the first time. But really, the doc was all like, "Ok, I'll leave it shallow, just remind me the day of the surgery." Okey doke doc.

He also told me to wear a tank top that day, a more "revealing" one to place the port in an area a little less conspicuous. I didn't have the balls to ask if he would make my incision in the shape of an S or a star or something, but I am going to, the day of the surgery. My step mom, who is also a surgeon, looked at me like I'd grown a third eye when I asked her if she would do that for a patient, so I am not holding out a lot of hope.

Also, the dude says he wants to use a general when I get it rather than twilight me. My step mom said that this doesn't mean a vent, but that I will have some doodad half way down my throat to hold my tongue in pace or some business. I am going to call the doc back and ask about all this. she thought maybe he was worried about my breathing during the surgery - but why a general would make this a BETTER option, I dunno. I want to reveal: hey, yo, doc, I am not a narc virgin, you can HOOK IT UP and I will be just fine. But I keep that bidnez to muhself.

Ok, then the other big thang in my life is disability.

I came to the conclusion that I cannot go back to teaching. at least not full time, and not children. My main reasons for this are:

1)I got sick a lot when I taught and my susceptibilities to abx are getting fewer and farer between and so I don't want to end up on IVS all the time and then having to juggle that with school and kids etc.

2) when I taught I didn't do treatments. I know there are plenty of people who can handle this, but I can't handle treatments, kids, housework and work work - something would give and we all know it would be a treatment.

3) I do qualify based on one of the three qualifications, so why the hell not try? The government says I am sick enough, so I thought I needed to get over it. with out the added stress of worrying about it all (money, esp)and trying to juggle odd jobs all the time (babysitting - not a health beacon job), I might be able to take even better care of my health.

But I did/do have some guilt as I know a lot of people a lot sicker who worked a lot longer under just as trying circumstances. and I have always prided myself on being a rather tough cookie, so some part of me thinks i am copping out or giving in.

and then, I had my first encounter with bias about it.

My son has a friend whose mother is trying to get disability. She was in an accident years ago and has a fused spine and some screws in her hips and stuff and so she is in a lot of pain daily. She has been waiting for a very long time for disability and is now working on getting a hearing.

I mentioned to her that I was hoping to get my case handled by the one of the advocacy groups available and told her about how things worked for CF patients as far as what was offered for help for us in getting disability.

She said, "you're so lucky. I'll trade you." uh huh. yeah. I have no doubt that her situation is miserable and there is no real "cure" for her pain; that it might seem unfair that I look relatively healthy and have groups available to help with my SSDI application - but it was a pretty insensitive thing to say. So I was like, "yeah, sure, any time you want a fatal lung disease with a life expectancy of 37.5, you let me know."

but then she went on about how she knew some people with CP who were "fine" and could work but didn't "just because they had cerebal palsy." holy fuck cat, come on. I realized a big thing.

If I go on disability I will probably have to tell people occasionally that I am disabled and therefore have to deal with this whole "you don't look sick" bologna, which I haven't gotten a lot of because I haven't been "sick" or aligned myself as a sick person. so I have to be prepared to reframe myself a little bit lest I get these kinds of comments. and that people will think I am milking the system or copping out or what have you.

I want to invite the non-Cf world to spend a day or three with me just to understand that I don't seem sick because I work hard not to. and even when I wasn't working hard to stay well, back before I was compliant, I was working doubley hard to hide my illness.

So today when I hacked up an olive from my lungs and panted up the basement stairs I wanted to call old girl up and say, "wanna trade now?"

We cradle together and fall down on our knees.

I interviewed my husband today for my thesis. I am not sure what I am going to use from the interview, but I thought some of his memories and viewpoints were very interesting and insightful. We've been a little estranged from one another for some time now, though we're working hard on getting it all right.

Marriage is not easy. I envy people who make it look to be so, though I sometimes wonder the level of their intimacy and honesty with one another when it does seem so effortless. I wonder sometimes if I'm just not getting it right, making things harder than they need to be.

Anyway, here are some high lights from the interview. I was trying to type as he spoke, so every now and again I could not keep up and ended up paraphrasing, but for the most part, these are our exact words. Some of my questions are left out though maybe they will seem obvious. I just could not type fast enough to add my own words in so I assumed I would remember what I asked.

Gregg interview 6–24–10

Do you remember when I told you I had CF?

I remember the weekend we went my brother’s at the lake and you told me. I remember I did not know what it was. Had no idea what it was.
Didn’t know anything about it until you started explaining it to me. (I don't remember telling him atthe lake, I remember teeling him on th ephone in the kitchen at the duplex I lived in at that time)

What did you think after I explained?

I didn’t really start thinking about it until you started on your machine and stuff

That was after Marlee was born

I know

You didn’t notice me coughing?

Yes, but I didn’t realize how far along. I just remember the stories of your dad getting you into swimming and sports as your treatment

What did you think when I coughed when we first met?

I thought you were laughing?

All those times?

No but at the onset of it

After getting the vest what did you think?

The things you had been talking about kinda, not hit home, but made it more “here it is” this is what it is and, "I have to do this as the treatment for what I have," you know, and it had to be a regime, you had to do it. I understood you had to do it.

Did it annoy you?

No not at all.

Did it scare you?

No I wouldn’t day that it scares me because I know you don’t have to be pushed to do it, if you had to be constantly reminded, that would make it more "do or die" but that is not your make-up. you know what you need to do and you don’t need to be necessarily pushed. Now running or any kinda exercize outside of that, it’s a little bit different, but I think you knew that all the years of not necessarily ignoring it, but not thinking it would not happen to you, reality set in for you too, you know, so you just kind of adopted it as a way of life.

Do you think differently when you hear me cough now than you did before?

Like eight years ago?
Your cough is different, you cough less at night.
We can’t wrestle around like we used to, we can’t grab-ass around

I feel like I can do more of that stuff now, because I actually do treatments now, but you don’t think so?

I agree you cough less. I used to be able to time it.
Well, I knew I know when you are going to stop coughing, I know when this is the last time she is going to have to clear it out and then she can relax because I can just tell by how you cough if you’re getting it up and out.
I’m not scared for you.

But I’m gonna die. nobody has "survived" CF or not died from it iunless, you know, they got hit by a car or had a transplant and it worked good like my uncle. But then you have Eva and Paul and all these other people over here

I’m not scared for you, I don’t feel , you know, it’s like that newspaper article I read about special needs kids like that little boy, I felt sorry for him because he will never have a functional life. you still have a functional life. I’ve never thought about your life being any different than it is today because I don’t want to think about that. it’s just not how I – you know, it’s not that it hasn’t crossed my mind, but that is not my everyday thinking. I know things will change for the worse, that thought is in my mind, but it’s not constantly rolling around in my head.
When you go on IVs, the first dose is all I think of, I get into the midset of: ok here we go, we have to get in the mindset and after that, it becaused normacly and I know what we have to do and what you expect from me. But I don’t worry about the next time you have to go on IVs.

I am just under the mindset of take it as it comes. I am better with reacting to something than preparing for something that is going to happen anyway.

Maybe at some point in this thing I am going to have to change the way I think about it, but I am not to that point yet. I am not at the point where I need to panic. there is a fine line between panic and concern and I am always concerned about how you are doing, but there is a fine line – like your mom, I mean, she means well, but I can’t think like that, it would drive me crazy. I couldn’t do my job and worry about the things that are going on. maybe I just don’t have the mental capacity to give as much attention as other people give to it and be able to handle all the other things that are going on, I don’t have the mental capacity…

I just prioritize and you are the most important.

I remember when I had to take Marlee and they were coming over with the vest…you were still nursing. she was little and you didn't want her here while you learned how to do it. I took her to the mall.

you did? the mall? I don't remember that.

I remember your first IVs, staying up until 2 in the morning the first night and you freaking out because we couldn’t get it started.

We had the pole

That was for the one, and the other one was the ball which you could carry around, but the one for the most part you sat in the kitchen and did it. and I remember all the hoses and shit.

Anyway, as I feel with this entire blog, this is probably more for my own fascination than anyone elses, but when he said he used to be able to time my coughing in knew when I would be done, for whatever reason that meant a lot to me, let me know he really has been present in all this, albeit silently quite often, but still, here.

win big, mama's fallen angel

Thesis work. I am posting for my own records, but also I'd love feedback. I need a draft by Aug and I am trying to get a good 20+ pages to my director before next week.

It wasn’t until sixth grade, my hair crimped, a black guns-n-roses t-shirt, when I reluctantly followed my mother for the last year to M Elementary school to meet my new teacher, that I remember becoming aware of what this meant. What CF meant for me. I smiled nicely at the teacher, checked the class lists to make sure my BFF Lo was in my class. But I felt something different in that meeting and so later that night I snuck the “A Child in your Classroom has Cystic Fibrosis” pamphlet from between the Salem menthol 100s and bottle of my enzymes in my mother's purse and crept into my room. I had never read that pamphelt or much else about Cf before that time
“CF is a genetic disease. It is the most common life-shortening disease among caucasions; people with CF are living longer than ever often into adulthood (age 18 and older). Thick sticky mucous builds up in the lungs leading to recurrent lung infections. Malabsorptions leads to poor growth, stomach cramping, and frequent, loose, foul smelling stools. Other complications such as liver problems, diabetes, and reproductive system effects can occur.”

How could I look at myself: a girl people often remarked as lovely and assimilate words like sticky mucous, foul stools? It wasn't those things. I was those things. I had all the issues listed, but I didn't want anyone to know. To associate me with those words.

Some little part of me died that day. The ignorant part. Maybe the girlie butterfly part, if I had ever had one (I was, after all, a girl with crimped hair in a guns-n-roses t-shirt). I’d already had a rebellious streak. I was already irritated with the doctors who said I should not have a cat, who said I might start my period later than my pers, the constant flu shots and breathing tests. The social workers who meant well but who spoke in such a maple sugar sweetness that I simply wanted to bite them.

But that moment, reading that pamphlet, I felt the hope of a normal life being sucked away from me and in that vacuum I grew talons from my hands rays of red sprouted from my eyes. CF would not take me. I would not be thick and sticky and foul. It wasn’t a war I was waging, it was an absolute obliteration of all expectations. It would be a disinigration of every word every written about Cf in relation to me. I would not be what they said. I would need nothing. CF was an earwig and I was a shoe. If I'd idolized the rock goddess heroines of my MTV youth before, now I would become one. I would be shiny, golden, cherry red lips, a girl who was beautiful and desirable and wild and who in her three minute moments of MTV glory would never cough or shit or be anything other than perfect.

I became, at that moment,twelve year old girl with CF who didn’t have CF.


all writing on this blog is copyright of Shannon North

I can't dance, I can't sing

I'm not sure what is going on.

My daughter caught a cold from the baby we babysit about two weeks ago. I caught the cold from her - somehow three year olds are great at coughing in your face and sneezing on your food.

Anyway, we both ended up on antibiotics: amoxicillian for her, cipro for me. I am also on my colistin month. I asked for three weeks of cipro. I also asked for a referral to get a port. I have the cipro, buy nary a word about the referral, though my clinic NP did say she thought it was a "great idea."

As seems par for the course when I get sick, I can't seem to exhale easily. It's the darndest thing. Air comes in OK but on the way out it is this wheezing darth vader ujjayi breath. and I'm tired. sooo effing tired. I don't think I am desatting just based on what people who do desat say about it, and I have not typically had trouble with my 02 sats....but I have no idea what my FEV1 is right now. I'd venture to guess it is back in the 50s since stairs have become a trial again. Who the hell knows, it's not like I can be seen when I am sick, my care is all over the telephone.

I've only been on the cipro not quite a week, so I want to give that a chance. Also, I tolerate colistin rather well, but this wheeziness is very reminiscent of how I feel on TOBI and I wonder if my already irritated lungs aren't liking the colistin as well as they usually do. I seem to feel better BEFORE I do it rather than after. I don't know. I'm bummed.

It is so tiring to not feel good. I forget about this when I am doing OK. There must be something different about this bout of illness though because my husband has been nothing but nice and helpful. Maybe it is because I held his hand to my chest the other night so he could feel the crackling and vibrating in there, or maybe just that he can see me pause while doing a simple task like unloading groceries to catch my breath and cough and cough and cough until it looks like vessels will burst on my head and my face turns rasberry and yet NOTHING wants to come up. bah.

I've been self medicating to make it through the day but I wonder if that isn't doing more harm than good...? It works for now.