now i've got the needle and I can breathe but I can't bleed

I had to have my port flushed last week. I asked the NP at my clinic to set up the flush as a flush/learning appt so that I can flush from now on at home. I'm not particulary scared of needles, I have poked myself before for an array of reasons, the two main were hormone injections when I was trying to have my daughter and the time back when 7% hts wasn't premixed yet and I dropped the huge gauged mixing syringe and it went straight into my leg right up to the hilt. I didn't fall over and faint from that, so I think I got the port thing.

Anyway, as is the case with my experience in the medical field, the nurses look at me like I'm CRAZY when I say I will be doing my flushes at home. Apparently they have never had anyone do that. I don't get it, but oh well. I assure them I know plenty of people who do this, there are even videos online.

I also only have an hour until I have to pick my daughter up at school.

So you know you wait forever on pharmacy (not to mention how long intake took - THIS is why I want to do this at home, I don't have time to be waiting around on other people's schedules every month).

Finally the nurse comes in with the port dressing chage kit thing and the saline ahd heplock and we both put on masks and gloves and she has me do the cleaning with the sponge thing. I like that tool, it reminds me of the things that hold the soap in them with a sponge at the end so you can clean the dishes. I digress - I realized that with the mask on, I can no longer see the port. I can see it just fine without that mask, but the mask skews my view and on top of that, when I look down I end up fogging up my glasses.

We decide to take the kit into the bathroom so I can use the mirror. She hands me the needle, which is bigger and scarier than I expect (but I'm tough, yo, I take it in stride) and says, "find the sweet spot and pop it in." Well, I used lidocaine before I came in and can't feel anything but the hardness of the port, so I aim for the middle and poke. The nurse hooks up the saline, but the port won't flush. The nurse fiddles around with it a bit (um, ouch!) and then decides we have to start over. Brand new kit and everything (which totally irks me as a waste, but whatever). She says, "I am just not comfortable with you doing this at home and since you are on a time crunch, I will do it for you now and you can come back next month and we will try the teaching again."

Really, that annoys me because I just missed the spot (I thought), it wasn't all that hard. Anyway, she comes back with the new kit, pops that bad boy in and guess what? It won't flush! Wasn't just me, sucka! Anyway though, I have to leave. So we decided I will get my daughter from school and then come back so that she can try again.

When I get back, I sit in a chair this time. She pops the needle in and the port flushes right away, so our guess is the first time might have been a positional thing from me looking down or standing up or whatever. I do, reluctantly, agree to come back next month for another walk through, but I really feel better knowing I hadn't totally effed up the port flush.

So, nothing is ever easy here in medical land and now my port is kind of sore, not intolerably, but the vest is uncomfortable again.

I do have a cold though, so there is some silver lining that if I have to go on IVs I am all set. Not that I want IVs, mind you. or not that having a cold doesn't suck. But you know...look at the bright side. ha.

I loved you like a long lost brother

My baby brother was married last weekend (the above photo is a few years old though).

It is hard to believe he is a 29 year old married man, I still see him as this little blonde twerp running around trying to hit me with his He-Man sword.



We traveled to San Diego on Wed. to make a bit of a vacation out of the whole thing. My kids traveled EXCELLENTLY - we are totally ready for our first over seas trip, I say. And rumor has it my other bro and sis-in-law might be moving to London for a year, so there is a distinct possibility that will be our first foray across the pond.

Anyway. the weather was a lot colder in CA than I'd expected. I'd planned on catching some waves but 60 degree water temps and a newly healing port don't make for a surfing queen. My boys braved the waves for a bit though, tougher than I, they are.

I did get a bit of shopping in and a very nice lunch with fellow CFer Cowtown - aka Kelly. We had a good laugh over the fact that we were both hacking away at our table. I love hanging out with other cystics. It's something I never did before the last few years and I feel I missed out on it as a kid. The commraderie in the just knowing the person with you shares your secret is really fulfilling, so I owe Kelly a big thanks for making the drive down to see me - despite a phone call from ym ten year old saying, "Mo-om, when are you coming back? This is a fmaily vacation, not a friend vacation!" oy. No rest for the mommas.

The wedding was a success. No one said, "I OBJECT!" The bride was gorgeous and my bro looked great. All the girls think he is a stud. I still see twerp-head when I look at him, but I am proud when ladies fawn about knowing he is my baby bro. Once when I was a cocktail waitress in a Mexican joint, we did a Christmas gift exchange and the girl who i got as my giftee asked if she could have my brother for C-mas.







My half sister was there also with her 6 kids. They live in NM and we don't see one another all too often, so that was a nice treat. My kids had a great time with their cousins. Marlee kept calling them her "new cousins."

My mom also turned 60 when we were there. I talked to my son about how important that was, and that both my grandparents were there to witness it. I tried to get him to imagine what it would feel like to see your child turn 60. He said, "I want you to be at my sixtieth birthday!" It was a bittersweet moment, as I would like nothing more.






I didn't take my vest with me, I have yet to travel with that, and I paid for it a bit. During the ceremony I had to do the Darth Vader breathing so as not to cough thinking, "not now! not now!" Funny how glad I am to see that old boy when I haven't in a while. AND, I can now use both shoulder straps when I vest. It took about 3 weeks for that small pleasure (due to nuevo port).

Now we are back to the grind: school, work, etc. I am soo ready for another vacation!

the monster mash, it was a graveyard smash

So, we're one week into el port-o and I have to say I don't love it. I know I will when I need to use it. But for the love of pete, I can't imgine having a needle stuck in it! It still really hurts. I had myself convinced that my daughter had knocked it loose yesterday as she likes to come barreling into me. I wasn't looking and the pain of contact when she hit my chest brought me to my knees with a hearty eff word. oy.

I am a bridesmaid in my brother's wedding next Sat. and my dress sits right BELOW the port. C'est la vie cystique, I guess. I hope it starts to look prettier. Somewhere along the way this seemed like a good idea to get out of the way before we left. Now I ain't so sure. And while I have removed my own stitches, it looks as though the port is here to stay.

I think it needs a name.

In other fascinating news, I made my own zipper jewelry hair barrette which is super cute. I love seeing things I like and making them myself. truly rewarding.

I had some more intellectual stuff to say but the truth is my pain meds are kicking in and I no longer give a shit. Oh, I was going to say something about meds. Now, it might just be the crowd I run with, but people are just not shy about asking if they can have some of your pain meds. HEL-LO, I am in PAIN here. Clearly these people have never felt the "you are a junkie" vibe some medical practitioners - vowing to save your soul from addiction - give you when you call for narc refills. I know i have been guilty of this very thing in lives past. But I will never make that faux pas again. Off soap box.

Wee one wants to watch "Scooby Doo" so I must surrender el computadora to her whims. She is so cool though. She watched all of season one of "The Munsters" on netflix and wants to be a vampire mermaid for Halloween.

fotografias:

port, one week post


mon visage - see the zipper hair thing?


Mugshot

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?"