Thursday, December 9, 2010

doctor said he's comin' but you gotta pay him cash

Part of this was written about a month ago, the rest edited and added upon today.

La clinica.

Today was a strange visit. It was like a test, only they didn't know it. But after my hospital fiasco last month, I sorta wanted to know where I stand in the we-really-do-care-about-you line. To me, I want a doc who actually gives a fuck about me. I know there is a line that a lot of docs try not to cross so that they can see their patients in a mecial and treatbale way without letting personal opinion get in the way. But I think new medicine is hopefully trying to get past that and really see the patient as a person. So I have trouble going to docs who don't seem to give a shit. My rheumatolgist doesn't remember my name when she walks into the room whereas my ENT personally calls me to see how I'm doing. Who do I trust more? Sure, the rheum might be a genious, but she doesn't act like she cares. I guess I am a sucker for heart over brains.

anyway, so I've FINALLY met my out-of-pocket for the year (please pay for the hospital, thanks). So I switched my visit to today from Jan. That gives me, barring illness (~fingers crossed~), until March when I need to be seen again. We are literally drowning in medical bills, so the longer I can push things off, the better.


(I don't say anyhoo ever in real life, but for some reason I seem to like to use it in writing. I wonder is this means that underneath, I really am the kind of person who would say anyhoo? I imagine that kind of person to be like Marty McFly. So I'm an inner Marty McFly),

my purpose today was to talk about my bowels (FUN!) and ask about what actually happens in my clinic when I go in for a tune up. I have managed - somehow - to avoid the 'traditional' CF tune up for 33 years. I was pondering today just how I managed to do that and I think I was a master avoider and liar. This makes it hard now that I am actually coming clean with how I truly feel. I feel like such a complainer and that people think I've deleoped hypochndria, but the truth is I've almost always felt this way, I just denied it and kept quiet.

Onward ho

So, there was a nursing student with my intake nurse and I totally crawled out of my shell and asked her, while my blood pressure was being taken (155/80 and then 135 over something - WTF is up with that? - I wonder if I was that out of breath coming up from outside that my heart was still racing?? oy) if she had any questions for me. and she did! and we talked about CF for a good 15 minutes (which is a lot in a med office, dontcha think?). She asked about the severity of my disease. I explained to her that while I am relatively healthy for my age, that my genetic make up is really no different than most the other patients she'd seen. I told her that as far as my version of CF and being "mild" goes that I think there is just a line from birth to death that a Cf patient takes (or anyone, hell) and we just all plot at different points on that line at different times.

Comparing my disease at 33 to someones elses at the same age is like apples and oranges. Instead, compare where we are - no matter our age - in the progression of the disease. It seems Cf can be sneaky, holding one person at bay with 25% lung function for years while another winds up vented and dead with a higher lung function in a quicker time.

She asked me what one thing I would want people to know in the medical field and I told her that I wanted people to hear what I was saying and to believe that I know my body. Also, the point of my visit was to establish that I truly need a good doctor/nurse - patient relationshsip established. With everyone farming people out to specialists for every ailment, you see a doc maybe for 10 minutes a year depending on the problem (like my dermatologist).

This is why I push my CF clinic to care for everything they can and will, be it my joints, intenstines - whatever. It's all related to that damn gene anyway, right? I mean, I don't want a pap from my CF doc, that would be awful, but I would like to be able to talk sex or birth control or incontinence without an immediate "let's get you into a specialist!"

It was a fruitful conversation and I felt good not just nodding pleasantly and wishing she'd move on, as is my tendency.

As for my doc. I'm working on him, but after being back in town for about 13 years and seeing him for that entire time, I have come to decide I like him. I hope we can carry our reltaionship out for the duration of my care, be that ending in death or TX (this does assume that he works as long as I live and I don't outlive his retirment. But that's not something to dwell on now, is it?).

But I was peeved that I didn' get much (any) hospital attention. I find myself becoming sort of a medical diva. Well, maybe I'm totally not a diva, but I am willing to be a lot more demanding than I ever was before. I can't let myself get swept under the rug. I don't think docs purposefully do this, there's just too many patients and too little time.

A doc here in town was thinking of opening a naturalist kind of medical center, incorporating herbal remedies, nutrition, acupuncture, yoga etc. with Western medicine. It was going to be a women's clinic. Of course all those natural extras would be out-of-pocket except for those lucky ones whose insurance covered something like that. That in turn greatly reduced the type of patient who would be able to afford such services. I was invited to a forum to discuss what this new women's center would look like, what services it might offer, and what wasimportant to the patient.

I kept lamenting insurance woes and how I fel they needed to fight insurances to try to cover some of these services such as acupuncture because otherwise it creates the inability for such a clinic to truly offer that kind of care to the masses. The concept presented by the staff was that this would be something new and exciting and the patient would be top dog. Without making it available to any who needs it, it just seemed to me like any other money making venture. It becomes elitist. This isn't necessarily bad save for the fact that none of the women present were overly wealthy or could outright afford for these services with any regularity.

The biggest suggestion all the women had on this panel was that they wanted a personal connection to their doctor. Many of them were there because they were patients of the doctor who wanted to open the clinic and were quite fond of him. The thing that irked me was if he was as great as they all put on, why wasn't be present at his own community panel? 'Cause the only person there was the manager or PR person, or whoever she was, hired to help get this thing up off the ground.

Where the hell was this great doctor everyone loved and who was so concerned with our opinions on his new medical spa or whatever? To me that stuck out like a sore thumb.

My goal for 2011 was to write more and be happier. This post may not adequately reflect my happy demeanor.

because blogs with photos are more fun:

Mi hijo last summer

Miss M in the hat I crocheted for her for the winter

proof that I'm happy. really.

Tuesday, November 30, 2010

cleaning up shop - archives

I changed my blog roll around taking off the craft blogs and adding some CF ones. Now it is mostly all Cfers of there, so take a peek.

Also, I am going to copy some of my blogs from my mommy blog, "Cool Wool Baby" to this one and then delete that one. I never post on it, but I have a hard time letting go of stuff, thus, the merge. So I will savea bunch of those posts by just archiving them into one post here. Read if you care (or dare) or just pass it on by, just for my own records, mostly. :)

go down easy baby, go down slow

Miss M did not nurse last night. I guess she just forgot, or was too tired, or just thought it wasn't worth her time. I feel like my boobs hurt today, but of course they don't. I had a hard time not wanting to remind her to have her bubbies last night - but this way is better, this sort of mother-led child-led combo. I know I edged her here, but she was the one who chose not to nurse last night and that makes me feel better, really the only tears we had in this entire journey over nursing were the three bad nights when i took away the night nursing, besides that, this kid has pretty much had all the bubbie she's wanted. She never really fussed as I reduced the other feeding which always told me that she didn't really "need" them. We'll see what happens tonight. I can't believe we could really be close to being done?!

I'm just so proud of us. Especially in the second year when society got harder on us, family tsked tsked and made light of my choices (She'll never stop nursing! You'll get baboon breasts! so on and so forth), and I even had a bit more trouble with not sleeping and feeling tied down when I was wanting to be free. But really - 28 months is not a very long amount of time - shorter than most car leases and look what she has gained: a very secure sense of her place with me, wonderful immunties that I have seen get her out of some nasty little colds and just the good ole thwarting of social norms that I love to evoke.

So, she might want to nurse tonight, she might not - maybe next week. I'll let her. I know now we are at the end of the line here. I say a sad, fond farewell to my super powers and my centerfold breasts and magical womanly ability. What a sad and liberating thing, for both of us.

you put your right foor in you put your right foot out

My son has a little boy on his football team who has no feet. He wears prosthesis (prostheses?)that attach to his shins and go into his shoes. Because of this, he isn't very fast and really isn't that great of a football player - understandably. When the kids have to run, he is always the last one.

Often, a few boys will go back for him and run in with him - and when he finishes, the team - and some of the parents - will clap. I remember this from when I was a swimmer as well. If some poor girl...perhaps she was handicapped in some way, sometimes she was just a reeeaaaly slow swimmer...if that girl was very far behind in a race, the spectators would clap her into her finish and cheer like mad when she touched the wall. I always used to give thanks that I was never that girl. And I wondered how this boy felt about the attention.

As a person who thwarted all CF-related attention, I actually felt sorry for him for that, not for his loss of feet, but for the fact that maybe, just maybe, he'd like people to forget he hasn't any feet. To just be treated like a normal, albeit slow, boy. So I didn't clap. I relaize that I can't project my own fears and desires as a Cf patient onto a little Indian boy with no feet, maybe he soaks up the attention and will go on to become a spokesman for the footless, but I do think I can empathize in a way that maybe not all of the clappers can.

Natural birth in a hospital?

I don't think I've ever posted our daughter's birth story - but a comment from my last post (about "The Business of Being Born")made me think I should. Kimberly poses the question - is it possible to have a completely natural birth in a hospital. My answer is a guarded yes. Yes, I did it. How? My delivering my baby 13 minutes after I walked in the door. If you're crowning in the triage room, there is no time for monitors and IVs and the like.

So here is the story of Marlee Sol:

I started losing my plug on Wednesday and Thursday. I wasn't too concerned, as I knew that could happen a while before labor begins. Thursday evening I started getting some cramping and told my husband to keep his phone on when he went to class. I had dinner with my mother and drank a tiny cosmopolitain, thinking that the vodka might ease the cramping and deter labor. It seemed to work, as I went home feeling not much of anything and slept through the night.

Friday October 6, 2006

6:45: My husband's alarm went off and I woke up thinking that I had cramps again. More mucous plug came out. Again I told hubby to keep his phone nearby. He went off to work and I waited for my mom to bring my son home - he spent Thursday night with her. I thought maybe my water broke, as I had some trickles coming down my legs, but I wasn't sure. I called dh (dear husband) back and told him I thought maybe today was the day.

7:20: my mom and ds (dear son) showed up. I told my mom to be on alert that she might have to pick up ds from school, but I didn't tell him anything because I did not want him to be worried all day at school. My cramping was getting worse, but I was still unsure whether I was truly in labor.

8:05: drove ds to school. Now I was sure I was in labor. I almost felt like I needed to pull over as it was really hard to concentrate on driving. I called dh and told him he better come home.

8:30-9:00: in the shower. contractions were getting bad enough that I had to sit down. Dh got home and started loading the car. I didn't want to go. I was forced to hands and knees with each contraction. They were 3 min apart and I could no longer think while having them. It took dh forever to get me to the car. I couldn't walk during the contractions and I was exhausted between them. Dh was getting panciky.

9:10 - driving. I was silent and ocntracting hard. Bumps pissed me off.

9:20 parking lot of ER - I couldn't walk from car. I wanted to get on hands and knees in parking lot - dh wouldn't let me. A stranger brought me a wheel chair but I couldn't sit.

9:32 - walked into L&D - fell to hands and knees in reception area. Nurses came to get me. I barley made it to triage. They wanted to check me for dilation but I couldn't get off my hands and knees. Finally said, "If you want to check, do it like this." I remember thinking that if I wasn't dilated at least to 8 I was going to have to have an epidural, natural birth begone! - I was in that moment that the Bradley Method calls "self doubt" - but she checked and said the head was right there.

9:40 - wheeled in bed from triage to delivery room while still on hnads and knees. I was asked to crawl from one bed to the other but before I could, I had to most animal instinct to push. I started gorwling and pushing. Some one told me not to push. I remember thinking that was an idiotic thing to say, as I HAD to push - and I did. Gave a push in triage bed, crawled to the delivery bed and continued pushing. The head was there (oh, ring of fire, how you burned my body!) and there was the cord around her neck. I was told to turn over so the doc could cut the cord before delivery - I refused and was forced by a nurse to my back. This was the only "unnatural" part of the entire thing, as it made no sense to me to push my baby out on my back. Dh reports me saying, "This is stupid, it doesn't make sense." I also heared a nurse ask the doctor if she wanted to do an episiotomy, to which I remember replying, "Just let it rip." Three more pushes - no tears or ripping.(hooray - just some mild labial abrasions) and...

9:48 baby is out - and it's a GIRL!!!

Mr. Angrypants learns to hustle

My boy is playing football. What a testosterone driven sport. As I watch his practices, the air trills with whistles and deep, booming voices making quips like, "You run like a girl!" or "Maybe you need to go home and take some Geritol," or my personal favorite and all-time standby, "HUSTLE!"

The boy, however, seems to just blossom under all this muscle. He runs as hard as he can the entire time, always trying to be the best. In any other sports he's participated in, this always seemed a little embarrassing to me - in football, it's required.

Though I often feel a bit out of place, I also realize that I was raised by a dad who had a bit of the football mentality and so I do get sort of caught up in the "discipline" and competition of it all. Though more often than not, I still have to remind my little fullback to pay attention to his coaches. For a boy who doesn't always follow directions very well, this should be a challenge as the coaches try to stake out plays with the boys.

Meanwhile, we are practicing right next door to one of the angriest men I have ever seen. His fence borders our playing field and is clearly defined with a sign that reads PLEASE STAY OFF FENCE. No problem as far as I am concerned, though small boys need to be reminded of this a few times - or Mr. Angrypants can come out with his Mr.Angry-pants German Shepherd and yell at them. And while I admit, between young boys hanging all over your fence every week and having to listen to "HUSTLE" being called out every few minutes as 500 POP Warnder football players inavde the field next to your home every week, one might become a bit irate. But the scene I witnessed when this man noticed that a parent's car was covering a bit of his driveway was unbelievable. The man got into his own car and within millimeters was going to back into this other person's car, all the while laying on his horn. After the infringing car had been moved, he got out of his car and proceeded to stare at all the parents who had turned to watch this fiasco. As a teacher and a mom, I know when someone wants attention for bad behavior and that is EXACTLY what Mr. Angrypants wanted - hey look at me, I am a big, bad, mean man with a mean dog and I'll eat you up. I turned away. He then got on his lean mean Harley machine and rolled out amid very loud revving pipes. oy. What a nerd.

The thing I don't get, is, with a field full of football dads - at what point is this guy just going to get his ass kicked? I mean come on, you're risking a lot acting like such a meathead when you are suppounded by other meatheads. Le sigh. We shall see what happens. I really want to study this guy though, but not until I bring my husband with me to practice, being a bit of a hothead himself.

stream of consciousness

I took my son to his first La Leche League meeting today. He was great. I love that he didn't bat an eye at any of the breastfeeding moms and at one point whispered to me, "Mom, do they solve problemes here?" Not to mention that another kid showed up with a mohawk - purple, no less - and so my boy knew he was amongst friends.

The baby is getting her top teeth. She is getting so big. I could almost be tempted to have another one. Almost, I said, but not quite. I am still mourning my loss of freedom a bit. Most of the time I am resigned to the fact that I never go anywhere without at least one, though often 3 children, though every now and then I really, really want to just be alone. And then when I am alone I just want to go home to check on the kids. It is a viscious cycle. I miss going out with my girlfriends as well. My husband doesn't seem to mind my never ending presence at home though...or maybe that's because half the time he isn't even here?

Enough complaining.

Obviously I have no one thing to comment upon today. I think the recent heat has melted part of my brain.

We are going to my husband's grandparents' 70th wedding anniversary celebration this weekend. Seventy years together. I need an array of adjectives to desbribe what I think of that! If we celebrate our 70th anniversary it will happen when my husband is 100 years old. Not likely. Imagine 70 years with someone - anyone - many people aren't even with their own children for that long. Seventy years. I can't even wrap my mind around that.

Hair! Long flowing Hair!

My son has a mohawk. He has been bugging me to let him have one for over a year now. I was hesitant to let him have one last year simply because Angelina Jolie's kid had one and so it seemed all the trendy moms were letting their kids have one too, and I prefer to be a bit ahead (who am I fooling? usually behind) on the trends rather than I sheep in the midst of I said no. But he persisted and I figured what the hell, and took his dad's beard trimmer to his head. We reshaped it with proper hair clippers a few days later, and I think he looks pretty cute. Everyone has an opinion about it though.

I know when I was a kid my parents weren't very adventurous with allowing me to have my own look (sorry mom, it's true) and everytime I tried something new it was met with such huge, often negative, reactions that it wasn't worth the embarrassment. So, more often than not, I chose not to inform my parents of my choices in appearance until after they were done (or not at all): double piercing my own ears in 6th grade; shaving the side of my hair off and dying it brown in 7th grade; wearing the see-through Madonna tank top to the roller rink in 8th grade; red hair in 10th, tattoo in 11th. I want my child to be open with me about what he likes and what he wants to look like. I think it is a good indicator of who he is, and I like sharing in his metamorphisis with him.

I find it fascinating that he wanted a mohawk for all that mohawks socially seem to represent: rebellion, anarchy, punk rock, redneck neonazis (yikes!). But I wonder what it represents to him? I know that it was after visiting Spencer's in the mall where the clerk was a young man with a huge green spiked mohawk that my boy really started bugging me for his own hawk, and I wonder what entranced him about that boy? Probably something in the same way Madonna fascinated me at his age (and my poor father trying to explain whay he didn't like it when I sang "Like a Virgin" as I ran around the house). There is something in the rebellion, the representation of something "older" and "cooler" that is so alluring. I feel a sense of pride in his bravery as well for all the things I was too afraid to do myself.

This same boy wanted his ear pierced and I said no. I guess I do have some limits. I am not against having his ear pierced, but I think that it should be something he should be older to do. Of course, at some point, he may come haome after having done it himslef with a sewing needle and a potato in someone's garage, and if he does, I vow to compliment him on his work rather than frantically googling webMD for information about tetanus or making him take it out.

I promise to weather the embarrassment of his new looks well, and try to never make him feel foolish for his choices. I hope this encourages his independence and leadership skills and allows him to develop his tastes fully.

And what can I say? It isn't so bad being the mom of the coolest looking Mohican on the block.

Meanwhile, this is what the baby is working on:

Jonah and the Whale

My husband and I have a heated and ongoing debate about the theory of evolution versus creationism. He believes, verbatim, what the bible says - that God created Adam and Eve in the Garden of Eden and they were the first people. I sway a bit more scientifically towards the theory of evolution. He gets very angry and insists he did not stem from a monkey. We go around and around about this.

Yesterday our boys were watching a documentary about cavemen (Neanderthals, to be precise). One boy told the other that those were his ancestors - I chimed in that cave men were both of their ancestors (critics: yes, I know that homo sapiens did not evolve from Neanderthals). In walked hubby, saying, "They might be your ancestors, but they aren't mine." Now, it seems to me, that even if you believe in creationism and the whole Adam and Eve dealy-o, wouldn't they have technically been cave people as well? I mean I don't think the bible reports God created Adam a McDonald's and a Lamborghini. I think I recall something about leaves covering nakedness and hunting for food - but, heathen that I am, I may be wrong.

So the conversation then evolved (pun intended) about the "truth" of the bible. My husband was angry that I was trying to disprove the bible in front of the boys. I argued I was only proving that the bible is not always meant to be taken literally. The bible provides lessons that we are to learn from. I equated it to my son with the story of the boy who cried wolf. We learn a lesson from that story while knowing that it is indeed just a story.

So I asked the kids and the husband about the story of Noah and the Ark. How could Noah have taken all the animals two by two onto the ark? Wouldn’t the lions have eaten the antelope and the coyotes the bunnies? Why didn't Noah get asphyxiated by a boa constrictor? How did they all fit - was the Ark that big? Both boys seemed to contemplate this. My husband asked me whether it says in the bible that Noah actually took ALL the animals. Which led me to another point - either Noah had to have taken all the animals that are alive today, or, some species must have EVOLVED into other species? Nevertheless, I took it upon myself to look up this particular passage in el bibulo (Genesis 6-8) and happened to read that Noah did all this when he was 600 years old (critics: I know that you can interpret 600 years-old many ways, but bear with me here). This revelation only added fuel to the fire: an already ludicris story made even more so by the geriatricness of its hero.

It seems to me that in allowing my children a chance to think, logically, about religion does them no harm. While I know it can be a hairy subject, and that most of my family does not agree with the way that I perceive and go about teaching religion to my children, I think I do a disservice if I offer up religion without thought.

Adam and Eve is a creation story. Many cultures have them. The ancient Maya thought the world was created on the back of a crocodile. The theory of evolution is also a creation story, though one with a bit more data behind it. Should my children only be subjected to the Christian creation myth as truth? Or should they be allowed to peruse many creation myths to compare and contrast and rally against as they develop their own thought patterns?

Apparently however, according to my husband (and various others, I am sure), if you don't believe in Noah, you are going to HELL. That's a nice concept to teach kids, isn't it? Billy, if you don't eat all your peas, you could go to hell. Sarah, did you lie about making your bed this morning? Hell is awaiting you, young lady. What is hell anyway? Oh wait, I know, a burning hot sulphuric place where a guy in a red suit dances around with a pitchfork. Yes, this is definitely a good thing to teach kids. We won't let them watch Cartoon Network, but we will teach them about hell.

For the record, I don't believe in hell, and though my husband thinks that's where I might end up, I have to disagree. I don't believe that God (you know, when HE sent the pages of the bible floating down from heaven a few years back) intended THE BIBLE to be the last word. It's more of a guide - as is the Koran, Torah, Bhagavad-Gita. We take what we need, we live life in the "right" way (do unto others is repeated in most religions - karma, reincarnation, etc), and we are thankful for what we have everyday. If living by these rules and teaching them to my kids is wrong, well then, I guess I am doomed from the start.

Finally, I end with some words from Marx. While I don't agree with Marx fully, I do think there is some food for thought here:

Man makes religion, religion does not make man. Religion is indeed man's self-consciousness and self-awareness so long as he has not found himself or has already lost himself again. But, man is no abstract being squatting outside the world. Man is the world of man -- state, society. This state and this society produce religion, which is an inverted consciousness of the world, because they are an inverted world. Religion is the general theory of this world, its encyclopaedic compendium, its logic in popular form, its spiritual point d'honneur, it enthusiasm, its moral sanction, its solemn complement, and its universal basis of consolation and justification. It is the fantastic realization of the human essence since the human essence has not acquired any true reality. The struggle against religion is, therefore, indirectly the struggle against that world whose spiritual aroma is religion.

Religious suffering is, at one and the same time, the expression of real suffering and a protest against real suffering. Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.

You can't chase the ice cream man during summer school

Recently my son was concerned that he was going to have to go to summer school. Though a teacher by trade, I don't particularly believe in summer school. While it may have its time and place, and for some students may be the difference between success and failure, I think overall, summer school just sets children up for school burnout. So I told my son, that while I was pretty sure he wouldn't qualify to go to summer school anyway, if he did, he wasn't going to go.

He immediately went back to school to report to his teacher that his mom said he didn't have to go to summer school. na na na na boo boo.

The teacher questioned me about this at his parent-teacher conference. She said that he didn't qualify for summer school (which we already knew), but that if he had, he would "have to go." I politely smiled and said no, in fact, he would not have had to go. I went on to explain that I don't really think summer school is a good idea. Summer is a time to catch up on other activities - activities in my mind that are very bit as important as scholastics: getting dirty, playing in the rain, Little League games and swim meets, chasing down the ice cream man, performing first aid on a bike-accident-scraped-knee, staying up late and sleeping in, pick-up games of basketball with the neighbor kids, sleep-overs, beach picnics, catching fireflies, counting mosquito bites, sleeping in tents in the backyard and roasting marshmallows. Summer is for enjoying being a kid without worrying about homework and tests and bastardized - oops, I mean STANDARDIZED TESTING.

I realized as my son listened to my short diatribe against summer school that he was getting another lesson here as well. He was getting a lesson in non-compliance. When do we do what we are told and when do we buck the system? This is a hard call. It's much easier to teach our children to go with the flow and not make waves. They stay out of trouble this way (usually), and tend to be labeled "well-behaved." But how do we teach our children to stand up for themselves, stand up for what is right and make judgments about what is important? I have to thank my father for teaching me that you don’t always have to do what “the system” tells you to do. It has enabled me to stand up for myself many times. I want my son to learn this as well, but it is a sensitive lesson to learn.

I want my son to grasp that I think learning is important, but that we can learn in many different ways. What I won’t yet tell him, but believe to be true, is that schooling isn’t necessarily the only (or the best) way for learning to occur. I just don't necessarily think sitting in a desk seven hours a day and regurgitating information is all that helpful. I feel that our school system is based more than not on this model. Somewhere we aren't teaching children to think for themselves. Yes, I think school teaches children to think - but not independently of the system. We just teach kids how to go with the grains.

I don't want my son to learn that you can defy all authority or always fight the system, but I do want him to realize that we have to take many factors into account when we make decisions, and sometimes making a stir is for the greater good of the cause. Summer school would not bode well for any of us in this family, and I highly doubt I will ever send him. At least not unless I feel it is for his greater good or if it is his choice to go rather than a bureaucratic mandate.

I know this same little boy wished his mother would have stepped in when he got sent to detention the other day at school for talking too much in class. Where was his mother’s system bucking then? Wasn’t she supposed to come down to school and give his teacher the what-for for sending her little cub to the wolves den? His lesson in non-compliance was extended: if the bureaucratic mandate makes sense, mother bear stays in her den.

I think my boy knows that I will step up and fight for him no matter the consequences when fighting is the right thing to do. I hope he is learning by example how to pick battles and when to stay quiet. Staying quiet isn't a feat I have completely mastered, but I'm working on it.

now I lay me down to sleep

Where is the time to write? There is none now that we have a mobile baby. She rolls, she flips, she scooches. The house is no longer safe from baby. Our bed is no longer safe for her either.

I co-slept (or shared-sleep, as the new term seems to be)with both of my kids, much to many family members tsk tsks: "It's not safe." "You'll never get them out of your bed." So on and so forth. None of which are true, of course. I find it very hard to understand how a mom can carry her baby in her body for 9 months and then put that child in another room to sleep?! It seems to backward. Definitely not my thing. In fact, even at seven, I still sleep with my bedroom door open and my son's as well so that I can feel more "aware" of what goes on in the night. I also still check to make sure he is breathing each night before I go to bed. Old habits die hard I suppose.

So our darling babe has quite a nest within the confines of our king sized bed. We sleep smooshed right up next to one another and save an occasional krick in the neck, it's working out quite well. That is, it was, until she became

I deemed the seven-year-old unsafe to be in my bed when he was older than his sister. I think he was closer to 9 or 10 months when he transitioned to a crib. He was also drinking bottles at that time, so there was less need for mom in the night. The baby is only five months, so to a crib she'll not go - there is no way I am getting out of bed the two or three (or four or five or six) times a night that she wants to nurse. But we are at a loss of how to keep her safe in the bed if we aren't in it. As yet, I don't think she quite has it in her to roll over one of us in the night without us knowing.

Summer is approaching, and I yearn for the ability to put the baby to sleep and then sit outside with a cocktail and enjoy an hour or two of a warm summer's eve. ALONE. So we may make a transition to napping in a crib and maybe laying down to sleep in a crib, and then being brought into mom and dad's bed later. Maybe. I am not looking forward to this. I remember all to well my son's big, round, confused eyes the first time I layed him to sleep in his crib. Though I stayed with him until he fell asleep, I could sense his confusion. I don't think it was fear, but definite anxiety. Sometimes thinking about it feels more than I can bear to go through again.

So maybe baby will never leave our bed and all those familial soothsayers will have the last word on the cosleeping debate afterall. Somehow I doubt it though. When we're both ready, we'll make the transition to crib and then "big girl" bed like most every other child we know. Until then, I go to bed when baby goes to bed. And that's okay with me.

New Light

I have to grocery shop at least once a week. There must be food here for my husband and son to pack for their lunches. If there isn't, my husband must eat fast food, and, even worse, my son must eat SCHOOL LUNCH. Since we don't want either of these atrocities to occur, the baby and I must foray into our friendly neighborhood supermarket.

Most of the time, I strap the baby into our mei tei Asian style baby carrier for our shopping trip. The reason for this is two fold: first, it allows us to snuggle. Tummy to tummy is such a pleasing way to carry the baby. It keeps her very content while we are in the store and more often than not even lulls her to sleep. The second reason is that I am a bit fo a germ-a-phobe, and I have found that if the baby is in the mei tei, people are far less to try to touch her. It is interesting how most people don't mind intruding on a baby's personal space, but are far less apt to intrude on the mother's. Oh, mother bear.

That being said, during out last shopping extravaganza, I left the baby in the baby bucket. It was biting cold outside and she was bundled up warmly. She had also fallen asleep. And, I felt lazy. So I hauled the carseat from the car and plopped it into the shopping cart. The movement of the shopping cart rocked the car seat gently and the baby stayed asleep for a bit.

Our first stop was the delicatessin. Deli meat is a necessity in our lunch-packing home. The woman behind the counter cooed and sighed over the baby as she cut our meats and cheeses. Once she had completed my order, she came out from the counter, and, grasping the baby by the hand, began baby-talking to her. At first I was taken aback. I could just see the listeria oozing from her gloved hand. But she was so happy when the baby smiled at her, I just had to laugh. "We've got to show Jean!" she exclaimed, rolling my cart off towards the bakery. Having no choice, I followed behind. "Je-ean," she called to the young woman behind the counter. "She has all boys, " she then whispered to me knowingly. Jean came around and kissy faced the baby a few times, before gently admonishing her friend to go back to work and leave the customers alone.

No sooner did we hit the cereal aisle then I noticed an older man nudge his wife our direction. They beamed as we walked past. Two more women approached the cart to have a look at my baby. "I've been eyeing that baby for a while!" one of them exclaimed as she peered over her glasses and made goofy faces and kisses at my daughter. Both were simply filled with joy at seeing a baby. And, kind soul that she is, my babe obliged each of her courters with smiles and babbles. Every person who walked up to visit with my little one left beaming. She'd made them each feel so special, as if they were the only one in the world that she'd bestowed such a delightful smile upon. What a wonderful feeling it was.

That shopping trip took much longer than our usual jaunts, but as I left the store, I felt warm. I had brought a tiny little ray of sunshine to a few people just by allowing my baby to greet the world. Babies make people so happy.

A few days later I took her to see her first production of the Vagina Monologues. Again we were greeted with delight. "Thank you for bringing a baby!" one woman cried.

It is so affirming to see that there is still beauty in this world, and it is found in even the smallest creatures. That joy can be created in the strangest ways and oddest places. Who would have thought that a quick trip to the supermarket or the theater would result in creating moments of happiness for so many people?

I can only hope that this child of mine continues to inspire such joy in those around her. She has brought a whole new light into our lives, one that I will strive to continue to share.

the nonattached parent

Buddhism tells us that attachment causes suffering - the cure for which is nonattachment. Undoubtedly, this is easier said than done. How on earth can one practice nonattachment as a mother?

I have thought long and hard about this. Each and everytime my children have been hurt, physically or emotionally, I think to myself, "Now see, this wouldn't be so bad if I wasn't so attached to them."

Ironically, the method of parenting that I seem to align myself with the most calls itself Attachment Parenting, so there is a definite conflict of interest here. While I am not a Buddhist, I am certainly interested in the philospohies that Buddhism teaches, and I think the fact of the matter is, attachment does cause suffering.

Recently the father of a friend of ours died. I debated long and hard about taking my son to the wake. I believe that death is a part of the cycle of life, and I don't think that children should be sheltered from understanding that. Though my son does not know death first hand, he knows that he is missing and aunt, an uncle, a cousin, and a grandma because of it. He asks a lot of questions about death, many of which I just cannot answer. I worried that if I took him to the wake and could not answer his questions, I might be doing more harm than good. While I would love to tell him, "you die and go up to heaven and see everyone you love and it's just great," I don't believe that. I'm not quite sure what I believe about death or what comes after that, but I know that sugar coating it for children seems wrong. Death is raw and it hurts. Over the summer, my son said these words: the angry smell of death. I told him to be a writer. But it's true...death is not pretty.

What do you think happens when you die?" I asked him.
"God will raise you up," he replied.
"Where do you go?" I continued.
"Um, to heaven - that's what it's called where you go."
"What do you do there?"
"I don't know, I have never been to heaven." I had to smile at his answer.
"Do you think it's a place?" I persisted.
"No, that's impossible," was his answer. "And you don't wear shirts there!" he added as he ambled out of the room to finish eating his pretzels.

Death has not been kind to our family. We have lost a lot of young people in serious accidents: boating, cars, and a fire. We have also lost to cancer. If my son is confused about death, he probably got it from me. I know that I get a bit neurotic thinking, and worrying, about death. I am not afraid of dying. I am afraid of living after someone I love dies. And I am morbidly afraid of losing one of my children. I used to imagine that if anything happened to my son, I would simply crawl into bed and stay there for the rest of my life. Now that I also have a daughter, I realize that probably, life would go on. It would have to.

It makes me wonder how do these Buddhists do it? Are those who achieve enlightenment the childless ones? How on earth can one form a relationship based on nonattachment with their children? Truly, it would make the cycle of life easier to bear, but what would it do in the mean time?

I pray each day for the safety and health of my babies. And I admit, I worry far too much about their safety. While I don't keep them in a bubble, I certainly wish from time to time that I could. I cannot practice nonattachment, even in it's sketchiest forms, when it comes to my kids. I am completely enamored with them and losing them is a crippling and unbearable thought.

Though I have started to realize that each day, I do become a bit unattached. Every day, they grow away from me and into themselves. Even the baby, who needs me to do nearly everything for her, has begun to be able to pick up her own toys. If I rethink my original quandry, I debate: maybe this is what nonattachment parenting is...letting go. It doesn't mean not loving, not forming strong bonds of attachment, but only being able to break those bonds little by little. It means setting free.

It also probably means I should stop pestering the kids into letting me go with them when they leave for college.

Come Back Little Boy

I have lost my little boy to the world of men.

For so many years, he was just my little guy. "My best boy." I would pick him up from daycare and he would barrel toward me yelling "Mommeeeee!" and throw himself into my arms with gusto. I was allowed to cover his face with kisses and hold his hand all the way to the car. We were the best of pals. He liked what I liked, ate what I ate, listened to what I listened to. Two peas in a pod.

I like to blame the change on first grade. Or his dad. But somewhere along the way, he started to develop his own interests. It started with kissing me in public. The first time he shied away from me, I chased his face around with puckered lips, not realizing that the shun was purposeful. I blamed it on the baby. After 7 years iof being an only child, I was now pregnant with his little sister. He must be angry with me - that's why he won't hug or kiss me or hold my hand in public. Yet when the baby came, he loved her almost as much as I did, but still he didn't want to kiss me if anyone else could see.

Then he started listening to Johnny Cash. I can't say I didn't help fuel this interest - what mother isn't proud of her little alternason listening to the man in black? But through the music I realized he was starting to define his identity and he was aligning with men! Johnny Cash was a man's man - man music. Goodbye Raffi. Suddenly he was running around the house singing, "My name is Sue. How do you do? Now you're gonna die!"

The worst was yet to come. For his birthday I bought him a nerf football. Sure, he had had many footballs before: people love to buy little boys balls of some sort or another, but this orange and gray ball seemed to fit into his hands with ease. We discovered, he had "an arm." He could throw at least as far, if not farther, than his eleven year old step brother. And, the real clincher: he's a leftie. More than one man has watched in awe as my little boy lobbed one off with his left hand.

I may never pinpoint the exact moment it happened - this loss of my boy into the murky, dangerous world of men, but one particular day comes to mind. Many months pregnant, I decided to nap on the couch while the boy watched "Yu Gi Oh!" And during that half hour snooze, a man wand must have waved over our house, as when I awoke, he was switching back in forth from a Bears game to a Vikings game mumbling to himself, "I can't believe they interceptioned it! Did you see him juke that guy?" I rubbed my eyes in disbelief. "Where is my son?" I asked. "I'm right here, mom....oh man, they need to run the freaking ball!" he cried placing his hands over his eyes. It was then, I began to feel that he was lost.

He was torn during the Superbowl. Dad is an avid Bears fan, Grandpa (Pa Pa) a Colts fan. "I still like the Bears first, Colts second, Patriots third and Chargers fourth" he announced to me last night after the Colt's victory. He and Dad then sadly commiserated in his bedroom for a few moments over the Bears defeat.

This morning, a day off of school due to arctic temperatures, I awake to the sounds of his NFL game on the PlayStation.

"You have thrity minutes of time to play that," I announce groggily. Glancing down at him I take in how his new large front teeth give him such an impish look, and the librarian chain I made him start wearing on his glasses (he loses them all the time!) is all askew. I smile at how oblivious he is to it's dorkiness. I know my little boy is still in there, but I also see the man he will become wrestling within as he tries to align himself with the men in his life and imitate their ways.

"Yo, Mom! Get me a beer, will ya?" he calls out, then burtsts into a fit of giggles at his own hilarity.

Come back, come back, little boy, I think. Then I remember how he made me sit right next to him during the game last night, pulled blankets around the both of us, and even saved my spot for me, though no one else was here.

A Mother's Guilt

Thoughts on motherhood?

Alas, where to begin? Motherhood is such an all encompassing endeavor...but I think I can easily start with guilt. A mother's guilt. What mother doesn't feel riddled from guilt from time to time - or all the time, as the case may be? As I type this, I can list a multitude of things that could cause me to feel crippled with guilt right now. My baby is lying on the floor under her flashing lights mobile instead of strapped to me in her mei tei. Guilt. She is fussing and I keep saying, "Just a minute, honey!" Guilt. My son is at his grandfather's house watching god-only -knows on television instead of here with me, sticking to his new Feingold diet. Guilt. It never ends, this guilt. I can have a perfectly wonderful day with my children - I can do everything that I believe is "right," and still feel bad.

For example. My son has been grounded for the last few days because, in a flash of anger, he threw his pop tart at the wall during breaskfast. "I just overreacted!" he pleaded. Nevertheless, I decided to hit him where it hurts and denied him the privelage of spending the night with his Nana. But, of course, I felt guilty about this, so I took him to dinner that night. We went to a great cafe with yummy vegetarian sandwiches, because he likes the bean sprouts on them. We sat and ate and chatted. I breastfed the baby while we played a round of Crazy Eights, and then we came home, bathed, did homework, and read a few books before bed. What a wonderful evening.

But then. Then I decided to check on him before going to tucking myself into bed with the baby and my husband. This is a mistake I have made over and over and over during the seven years I have been his mother. Looking at your sleeping child is the epitome of guilt inducing actions.

I pull the blankets back up around him, his legs sprawled out, the fine blonde hairs laying flat against his slightly damp skin, wet from ferverent dreams I suppose. A few hours earlier as I had tucked him in, I pulled these same blankets up, promising they would protect him from whatever lurks in the night. "This blanket was handmade by Grandma with love, so nothing bad can penetrate it. And this blanket was Dad's when he was a boy, so it has had years of protection under its belt." I smooth back his hair, wipe his brow and stare with wonder that this huge boy was once the same size as his four moth old baby sister in the ther room. I feel guilty for every cross word, for every time I was irritable...for not being a perfect mother all the time.

"I love you little boy," I whisper each and every night into his ear, with hopes that these words and that feeling will become so ingrained in his subconscious that never a day will he doubt how I feel about him. So that even in my moments of anger, when I cuss and grit my teeth and say things I don't mean, he will know deep inside that he is the love of my life.

I switch off the hall light and climb into bed, taking the baby from my husband, smiling down as her bright eyes stare back at me. I sigh and roll to my side hoping tonight she might nurse to sleep, so that I don't have to feel guilty when I don't want to walk her up and down the hall until she drifts off...though knowing that inevitbaly, anything these children want and need from me I will give them, all the while always worrying that it wasn't enough.

Whew. If you actually read that, you are crazy and I owe you a drink. ;)

after copying all that I see I could have exported it to my hard dive. sigh. oh well.

Friday, November 26, 2010

if you haven't got a penny, a hay-penny will do, if you haven't got a hay-penny then God bless you

Thanksgiving is probably the most laid back holiday we celebrate. Most holidays (esp. the religious ones) we spend with my dad and that side of the family. My dad's side is pretty religious and so Christmas and Easter are very important to them. As well, my dad has a pool and a large house on a lot of land with lots of space to have parties on holidays like the 4th of July, so we often end up there.

Celebrations at my dad's are always very formal (well not the 4th of July pool parites, but my dad is a little uptight and a lot OCD, so even laid back pool parties haev a lot of 'rules') - real silver dinnerware, dining at the dining room table, wine in goblets. This is very nice and I appreciate that my children get to grow up being exposed to that sort of stuff. I have no fear that they would not be able to assimilate into even the posh-est of parites as adults. But sometimes it's just too much. I want cheap beer and paper plates, throw-away napkins and plastic cups. I want the TV on while I eat.

At home, for every day purposes, we're an amalgam of both the above scenarios. We eat dinner together every night (try to anyway), we eat off of my very cool Goodwill plates, and we do use cloth napkins (cuz I'm green like that). We only have the TV on for special occasions (my kids think it the best treat of all to eat dinner in the living room and watch TV!). I want them to grow up knowing that mealtime as a family is a time to be together, not to zone out to the TV and devour your food without a thought in the world, to be aware of the food and company themselves. I want them to have good table manners, but I also want them to value the fact that spending time together as a family, no matter the setting, is more important than always knowing which plate is your bread plate, that the purpose of the holidays isn't just a show of cooking skills and dinnerware, but that even the quaintest of settings can equal the most meaningful and wonderful times of togetherness. That's what it's all about, after all, just being together for no other purpose than being together.

So Thanksgiving with my brother-in-law and his family is a nice, laid back affair. We eat off paper plates and watch football. We drink beer. The food is a mix of good ole homemade and store bought. It's so enjoyable. The kids get to run around. My BIL has some goats, ducks and a horse, so the kids get to play with the animals and no one frets about them getting dirty before (or after dinner). We just chill out, relax, maybe play a board game. It makes me so happy that my kids get to see both sides of how a holiday can be spent. While I appreciate the stringent adherence to tradition and etiquette that we find at my father's, all the pomp and glitter, I really love the laid back, no shoes, cold beer relaxation of the other side too.

and, because every blog is more amusing with pictures:

Saturday, November 20, 2010

'til the shadows and the lights were one

For your amusement, now that I can actually sort of laugh about the fiasco of my hospital encounter, I present to you before and after:

I took this after my first shot of dilaudid. It was IM in the buttocks - not so fun, but it worked quickly and i felt better. I thought, "oh ho ho, pain meds are working, won't it be fun to document this hospital stay in photos parce que c'est la vie cystique, n'est pas?" (sorry for my francophone friends if my French is bad. it's been une longue temps) However, I was pretty much incapiaitated with pain 45 minutes after this as the pain increased and the meds did less and less to help (or perhaps they would have helped if I wasn't waiting for hours between doses.) Here is a little secret: when something depresses my CNS, my left eye gets slightly smaller than the right. I have tons of pictures that show this and even brought it up to my eye doc who wanted me to see a neurologist. I declined, but now, every pic of me you see, you'll know if I was secretly hitting the hooch or taking granny's pain killers.

I took this about 6 hours later, after I was admitted and had my wonderful PCA pump. It was set on continuous dosing, which is why you see the button wrapped up. it only occurred to me after they took it away that I might have been able to hit that button for a little extra oomph. Oh well, it did it's job.

And that, mes amies, is a set of the ugliest pics of me you may ever see. I envy those of you who take such cute hospital pictures. I hope my next stay is planned so I can at least have a little lip gloss on hand, rather than the sweaty, dying cowboy took I was sporting.

Thursday, November 18, 2010

better out than in, I always say

magnesium citrate. yuk.

and thus has been my first overnight, non childbirth related hospital stay.

a hot mess.

Most of my faithful readers will have seen on cf2 that I came in with severe abdominal pain. Honestly, the worst pain I have ever felt in my life. I ended up in the ER because I was unable to walk into my clinic (that's how bad, I could't walk).

ERs are definitely really efficient places. I liked how they gave me a shot of dilaudid which wore off after 45 minutes but left me writhing in pain for 2 hours. that was fun. I honestly thought I was going to die yesterday - either from the pain, or that they'd decide to do exploratory surgery and kill me, or my stomach would crack open and spill all the contents out into my body cavity.

I survived. Now today, I feel pretty good (might be the pain meds talking). My clinic NP came down and talked to the nurse who then put a call into my doc for me. Finally. I have asked every person in this place to consul twith the CF people. Hopefully, (fingers crossed) I will be out of here ASAP. Well, after I drink this nasty shit and then shit it all back out. I was going to decline this last test, but I figure I need to get the crap (pun intended) taken care of so that the admitting will release me.

I have had no treatmetns in 48 hours now, so I am a coughing, junky mess. I want to go home. I miss my kids. I miss my real doctor...bah.

so that's my fun story. Wanderlosts hospital vacation. I'm not sure i could do this for weeks like some of us have to. well, I could, if I had my doc who could write orders such as NO LABS at 4 AM and such as that. I feel this is practice for when my time comes that I do have to be admitted for an exacerbation and I need ot get my mind around coping with that.

Yesterday I was in so much pain I would have agreed to anything (almost agreed to an NG tube - that's how bad I felt!). Today, feeling much perkier, I want nothing more than to go home. I'm just not that great of a patient. i don't like being told to do things without a reason or consult (with me). Maybe I need to learn to let things go more, but for now I am on a mission to go home. So with that, I head to the potty to learn to let go!

Tuesday, November 9, 2010

come over to the window my little darling, I'd like to try to read your palm

I'm feeling verbose today.

I find blogging so much easier than writing my thesis, which is now going on one year. Some of that is my fault. Well, most of it. 6 months was spent waiting for my director to read my proposal and set up a meeting with my committee, but since May, when that meeting was, has been my own apathy. I've set a new goal: my completed first draft will be done by December. I have about 40 pages written and in many ways it could be finished, I just need some serious editing.

My point is, everytime I sit down to work on writing it, I freeze up. I keep expecting to pour out honed essays, works of great insight and beauty! I rarely work on a blog for more than the time it takes me to write it and reread it (and as you can see by my many typos, even that doesn't always happen). Yet when I read back in my blog I find I really like some of the things I've written. So I keep stealing them for my thesis.

I've realized here in CF-land that since we all read one another's blogs, there are often concurrent themes and events that need addressing. I was wondering if, because we know that we are reading one another's journaling, we don't feel the obligation to make some sort of commentary on said events. I hope that doesn't come across the wrong, I don't mean it in a keeping-up-with-the-Joneses kind of way, just that this community is tight enough that when something of significance occurs, it touches us each deeply and blogging is one of the ways we reach out to one another to talk about it. And, let's be real, because we all want to release our own thoughts and conceptions into the blogophere. This has both positive and negative ramifications, of course.

Sometimes I write something like what I wrote above and I think it had great insight. Then I reread and it and think WELL, NO DUH.

Anyway, I had this great little note written out about blogging and the internet. I can't fnd it of course - one of those cocktail napkin epiphanies that all writers seem to be able to lose rather than use. It was something along the lines of how our blogs have become another outlet for our self-narrative (and in our case, for our illness narratives...hello thesis!). In a way, our self-narratives were written for us at conception as far as CF goes. Because of that commanility, we now have to carve out an identity separate from our disease and from one another within that disease as a means of self preservation - hence our blogs. Most our blogs have the overlying theme of life with CF, but they are all tinged with our individual reflections of self undefined by CF.


I am going to watch "Sex in the City 2."

Monday, October 18, 2010

the worms crawl in the worms crawl out the worms play pinnochle on your snout

Here is what my days have looked like lately:

take kids to school - come home and get kid I babysit for - vest/meds/etc - some odd chore - pick up kid from school - hang out, grade papers for class I teach, make dinner, run around - pick up kid from basketball and drive to FB - get home, make dinner feed kid - get kid one in bed feed kid 2 who is now home from FB -homeowrk, bathe etc kid2 - leave for class I am teaching - get home - go to bed

What is missing from that fun filled day? Why, it is my evening treatment. Yes, that's right. In the name of all that is domestic I have foresaken my evening treatment and thus will probably get very sick very soon.

The truth of the matter is I just can't handle these long days. I've never been a high energy type of person. I have always required a lot of rest. So the thought of staying up until midnight doing treatments has been more than I can bear. My husband is working out of town and so I am doing everything alone. Needless to say, I have been close to tears from pure exhaustion more than once.

I know, I know, I am probably supposed to suck it up. I aksed for this life, right? I signed my kid up for two sports at the same time, I am the lazy bones who opts not to stay up and clean out her lungs thus risking infection. I get it. But I am tired and therefore complaing about being tired makes me feel better.

The good news is Football ended yesterday with a slaughtering of my son's team (38-0 - ouch) and b-ball ends in 2 weeks and then, friends, I do nothing. woot.

In other news, my dear friend Cowtown recommended a book to me called Stiff: The Curious Lives of Human Cadavers by Mary Roach. Within the book, Roach visits a human decay facility in Tennessee where foresnic scientists study the decay process of the human body. Roach writes, "Let us return to the decay scenario. The liquid that is leaking from the enzyme-ravaged cells is now making its way through the body. Soon enough it makes contact with the body's bacteria colonies: the ground troops of puterfaction. The bacteria were living in the body as well, in the intestinal tract, in the lungs, on the skin - the places that came in contact with the outside will happen in times of plenty, the [bacteria] population swells. Some of the bacteria migrate to the far frontiers of the body, traveling by sea, afloat in the same liquid that keeps them nourished. Soon bacertia are everywhere"(66).

So I am reading this and all I can imagine is my dead body decaying into a green puddle of mucoid slime. Because, really, wouldn't the Cf body decay with a slightly different set of circumstances? Like, wouldn't our high salt content perhaps slow the process down if it weren't hindered by the other worldy bacteria content in our lungs? I have half a mind to let someone find out after I croak. The book is an interesting read though maybe not for the faint.

Final thougt. My port scare hurts. Like a burn. Yesterday I accidentally scratched it and about fell over. ouch. Is this normal, who the hell knows? Nothing is normal in la vie cystique.

Monday, September 27, 2010

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.

Thursday, September 16, 2010

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!

Saturday, September 4, 2010

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.


port, one week post

mon visage - see the zipper hair thing?


Friday, August 27, 2010

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.

Thursday, August 26, 2010

'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.


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.

Wednesday, August 11, 2010

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?

Saturday, August 7, 2010

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?"

Thursday, June 24, 2010

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.