One, two, three...

Is CF Controllable? A Matter of Life and Breath Blogger Challenge

2011-07-29T15:05:00.000-07:00

I can't believe it's been more than two years since I last blogged. I knew it had been awhile, but two years is far too long so let me first say thank you to Piper for extending this challenge; it motivated me, in combination with a few other things, to pick up this old rag again. Secondly, there were instructions to encourage my own readers to get in on the action by posting the following instructions (I'm posting them first, because I'm strange like that):

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

And with that, on to the writing...

Is CF controllable? What a tough question. As with most questions, the answer, at least for me, is 'kinda.' On one hand, if we do nothing to control the illness, eventually it will get the best of us. On the other hand, if we do every possible thing to control the illness, eventually it will get the best of us. There are breathing treatments, airway clearance methods, digestive enzymes, vitamin and nutritional supplements, antibiotics, and even exercise at our disposal, all of which contribute in some way to controlling the disease, but even if we are perfect and do all of these things exactly right, CF will still progress, we will still get sicker over time, and eventually, we will die. And of course, nobody is perfect.

For me, as with many things in life, it is all about finding the balance. I know I cannot do everything exactly right all of the time. If I beat myself up for missing an albuterol treatment, is that going to make me want to do it right the next day? Maybe. Is it going to make me feel bad about myself? Probably. And at this point, though I still struggle to remind myself of this, I don't have the time or the energy left to feel that bad about myself for one relatively minor infraction. Some might argue that, if I don't have the energy, well, that is even more reason to strive for the best compliance possible. I can't argue with that; all I can do is try my hardest to care for myself in the best way possible. And for me, that means allowing these minor infractions to pass with a 'tomorrow is a new day' attitude.

Having said that, I do still struggle with feeling judged. I feel it mostly from the medical community - the doctors and respiratory therapists and nutritionists at my CF clinic, especially. Whenever my lung function is down, the RT asks me, "have you been doing all your airway clearance?" as if a decrease in lung function must somehow be my fault. If I lose weight, I'm lectured about eating more and lately, since my weight has been so amazingly high, I am given the third degree about how much exercise I'm doing. It truly feels as if, no matter how "compliant" I am, there is always something I could be doing more of, doing better, working harder at. I rarely, if ever, receive a pat on the back or a "good job." It used to make me feel bad about myself, but now, it just kind of angers me and makes me feel as though these people really have no idea how much time, effort, and energy goes into just taking care of myself. They dole out all the treatments and prescriptions and lectures, so surely they must have some concept, so why do continually make me feel as if I will never be good enough in their eyes? Feeling this way is actually partly responsible for the way in which I treat myself; I forgive myself now, or at least I try to, because I know nobody else is going to give that to me.

What I have been struggling with more lately is the progression. Why do some people progress faster than others? Why have I seemed to stay relatively stable for the better part of 12 years? I was listed for transplant prematurely, I know that now. At the time, I was going through another rough patch, one from which neither I nor the doctors thought I would recover, but like so many rough patches I've hit in the past, I actually did bounce back. But why? Why am I so "okay" when my compliance in the past has been so sketchy, when even now, I struggle to exercise or eat healthy meals? And why is my 21-year old friend gone? There is no question that my health has declined; that while my FEV1 stays relatively stable, the frequency of my infections has increased and my ability to do "normal" things like work outside the home or go out dancing all night has decreased tremendously. But all this really tells me is that numbers aren't everything and I learned that long ago; it doesn't really answer the painful question burning inside of me - that question about why one person hangs in there while another is taken way too young.

This post is more about questions than answers. Really, it's just ramblings from a confused mind. But I think that ultimately, as I said before, all any of us can do is use the tools available to us to the best of our ability, love ourselves, forgive ourselves, and try to extend the same love and forgiveness to everyone we encounter. Though there is much that can be controlled in CF, and in life, there is yet even more that is somehow left to chance, that is unexplainable or not easily understood. It would serve us all to be mindful of this, the unknown, when making judgments about others, or even ourselves.

In Home Supportive Services

2009-02-11T14:12:00.000-08:00

It’s no secret that the economy is tanking. We hear about the national affects almost daily. It’s not surprising then, that most if not all individual states are suffering as well. Here in California, state workers are facing a nearly 10% pay reduction (which, honestly, is not so bad), and the Governor seems to be daily coming up with new ways to balance the budget. It was recently reported that one such proposal involves cutting funding to the state’s In Home Supportive Services program (IHSS).

IHSS in California has become the national model for providing care and services to the elderly and disabled, keeping them in their own homes and living independent lives. IHSS pays a “salary” to home-care workers, who in turn provide needed services to eligible recipients. Examples are cooking, cleaning, grocery shopping, etc. These workers are not medical professionals; they do not administer medications, monitor vitals, or anything of the sort. They simply help people stay in their own homes when they are healthy enough to not need hospitalization, but too sick to scrub their bathtub on a weekly basis.

The IHSS program, much like home-IVs for us, saves tons of money. It is plainly obvious to most of us how expensive it is to be hospitalized. Yet, many of our insurance companies refuse to authorize home IVs, instead forcing us to spend a full 2 weeks in the hospital. My previous insurance company, as an example, would have me go to a nursing home before allowing home IVs. True story. Can you imagine being 29 years old and having to live in a nursing home for 2 weeks?!

IHSS pays workers in California an average of $10 an hour. Sure, that’s more than minimum wage, but it is by no means excessive. I’m not sure what my point really is here. I think it just sucks that programs like this that are made to save money AND allow people to keep some shred of dignity as they grow older and sicker, are the first ones to face cuts. Even more than that, the public outcry that the entire program should be wiped out is beyond troubling.

People seem to think IHSS is riddled with fraud. Like any social program, I’m sure there IS some fraud going on. One example I’ve read time and time again, is that family members, who already provide care to their ailing parents, are eligible to receive IHSS payments. If they’re eligible by the program’s rules though, how is that fraud? To be sure, many people have to quit their regular jobs to take on the care of a frail relative. $10 an hour to help with family expenses seems reasonable to me, if it means keeping that many more people out of nursing homes, hospitals, and emergency rooms. Keep in mind, too, that there is a cap on how many hours an IHSS worker can be paid for; it’s not $10 an hour, round-the-clock (even though many relatives who care for family members DO work round-the-clock).

And on a personal level, as I myself get sicker and lose more and more ability to care for myself and my home, I have to wonder – will I be able to afford to hire a maid on SSDI payments alone?

On the other hand, where do we draw the line between responsible care for our fellow citizens and plain old hand-outs? So many people feel it is a right as a human being to have health care (I must admit, I fall into this camp). But as we struggle to balance budgets amidst a crashing economy, how much money can we really expect our governments (federal and state) to dole out? If my mom or my aunt or my sister-in-law can come over to my house once every couple of weeks and help me tidy it up, shouldn’t they do that for free, out of the goodness of their own hearts and out of a moral and ethical responsibility to care for one another as family? Where does individual personal responsibility fall when we’re talking about social programs such as IHSS?

There is a need for programs such as IHSS, for people who really do not have family or friends that are willing or able to assist them. But the very existence of such a program creates a sense of entitlement for people who ARE able to help their relatives. There is no question that caring for an elderly or disabled relative takes a toll. The question is, how much of a toll, and is it enough to warrant financial gain (however unsubstantial)?

As always, the answer is a little bit yes and a little bit no.

K's Picture Game

2009-01-31T15:18:00.001-08:00

okay, so i'm not going to tag anyone, but since i was tagged, i'm going to do this.

this silly pic is one in a series that i took back when i was courting rhi, although i'm not sure she ever saw this particular one. that day i tried on several outfits trying to show her my many styles.

not sure i swooned her that day, but somewhere i must have done SOMEthing right!!! maybe if she had actually seen this one, things might have turned out a LOT differently. hahahaha!!

Picture Game

2009-01-25T19:09:00.000-08:00

I got tagged to play the picture game, but I've delayed posting mine. Truth be told, I couldn't post the third picture in the third folder on my desktop. However, the 3rd pic in the 3rd folder on my laptop is acceptable. Here it is:

This is a pic I took of my couch when I was going to try to sell it on Craigslist. That was probably a year ago, and I've still got it, lol.

Okay, I'm tagging 3 people to do the same - post the third picture in the third folder, explain it, and tag 3 more people,

1. Tara
2. Layne
3. Kev

Can't wait to see what you guys produce! Have fun!! :P

The Sun Always Shines on TV

2009-01-24T22:07:00.000-08:00

It’s been awhile since my last entry. I’m almost embarrassed to admit that Christmas wasn’t quite the disaster I’d envisioned. But not so embarrassed that I can’t swallow my pride long enough to admit I was wrong about my dad and step-mom.

After I stressed and cried and wallowed in self-pity, I worked up enough courage to email a more realistic assessment of my IV status and ability for activity (or lack thereof); never mind the fact that it took me about 6 attempts to come up with something to say that wouldn’t be offensive, but would still accurately convey the message I needed to send.

At any rate, my dad and step-mom were more than understanding, took all the pressure off, and made both K and I feel pretty damn welcome. Of course, everyone loved K, which eliminated a lot of the self-imposed pressure I was putting on the whole event. All in all, I’m glad we went and I’m glad we had fun, too. Fun was a nice bonus and one I certainly wasn’t expecting.

It was great having K here for his entire winter break – almost a whole month together, YAY!! But it felt really crappy when I dropped him off at the airport. Seems like each time we have to leave each other, it gets more and more difficult.

I have really been struggling lately with some of the aspects of being a partner to a CFer. You all know he’s a lot healthier than I am, with much higher lung function and a considerably less grueling neb/vest schedule. Because of this, I’ve really taken his health status for granted. Logically I know that no matter what any of us do to take care of ourselves, we will still have exacerbations and we will ultimately decline. I know all this in my head and firsthand, as I’ve experienced it myself. But when it comes to K, fuck it’s hard to see him get sick.

I feel so helpless and frustrated when it seems like he could be doing more to take care of himself, but he just won’t. I think HE takes his health for granted on some level, too. I don’t want to be that annoying, nagging girlfriend because, shit, I know how that feels. I’ve been on the receiving end of that kind of nagging and all it does is make me LESS likely to do what I should be doing. But how do I convey to him how it makes me feel when he refuses to do more, to increase his airway clearance or try a different med? I know I shouldn’t take it personally, that it’s not about me, but I feel like I’m not worth enough to him to do whatever it takes to be here with me for as long as possible.

Maybe I feel this way because that is how I feel about him. The reason I want to be diligent and do any and everything I can to stay healthy, is because I want as much time with him as possible. Why doesn’t he feel the same way?

I find myself caught in this internal debate – knowing full well what it’s like to not have the energy to do that extra vest session, even though you know it’s probably what you need the most. I know what it’s like to get sick, to pass the point of no return where you know you’re headed for IVs, and once you’re at that point, it feels pretty futile to try and do anything extra to prevent being locked up. Because I know and understand all this, I expected myself to be better equipped to be a partner for K than any “healthy” person. Yet, there are many things I don’t understand about the way he approaches his health. We’ve talked about it before; he’s explained his reasoning to me. But it’s difficult for me to understand, even as he explains it, when I see him losing ground.

I’m dreading the day, for him and me both, when lung function doesn’t bounce back; I know it’s coming, and it hangs over me like two dark clouds.

Bah Humbug

2008-12-15T15:58:00.000-08:00

Every year, since I was 19, I have always wished I’d get really sick for Christmas and end up in the hospital. That is how stressful this time of year is for me. With divorce all the way up to the great-grandparents, on both sides of my family, piecing myself out to everyone who just has to see me gets more and more difficult each year. It used to be that I could handle going from house to house, family to family, hitting a couple each day from the 23rd all the way through the new year. But as the years go by, my body just can’t handle it.

I have tried to explain to my family that I just can’t see everyone, every time, every year. But each year I find myself up against the same battle: “well, if you go to your grandma’s on the 25th, couldn’t you just spend the night and drive out here on the 26th?” And if I say no, I’m the bitch who doesn’t care about seeing her uncle.

This year was the first year in a long time that I was actually looking forward to the holidays. I had been feeling so healthy, I actually thought I could take on the house-to-house-3 hour drive here-3 hour drive there holiday fun (sense the sarcasm). The one year I didn’t want to be sick and hide from everyone and guess what? I GOT SICK!! I thought it lucky that my doc agreed to let me do home IVs – no hospital, whoo-hoo! My thinking was, if I don’t get locked up, I can at least still do SOME of the things I’d planned this holiday season. Well it turns out, IVs make it all worse. I’d rather be in lockup.

Plans this year included spending Christmas with my father, something I haven’t done in years. My step-mother sent me an email asking me for my IV schedule so they could plan the day(s). I obliged, only to find an email response today asking, “so we have to be home by 3 for you to do IVs? That kind of limits what we can do. Can you do it in the car?” I just want to cry. Even if I didn’t have IVs to do at 3 (which I even said I could be flexible about and push until 4, but noooo, not good enough), I’d still have to do a friggin’ breathing treatment at some point. Do they really think I can leave the house at 9 am and walk all around San Francisco for 8 hours, with no treatments in between? Shit, I couldn’t even do that healthy, let alone when I’m fucking sick enough to need IV antibiotics.

I can’t even get myself out of bed to go to work, and I have to make cookies and buy presents and get where I promised I’d be, all with a smile on my face and an “I can do it” attitude, otherwise I’m perceived as giving up or having a bad attitude. And now apparently, I have to sit alone in a car for an hour, on the side of the road in San Francisco, hanging my IV bag from the oh shit handle while the rest of my family ice skates 6 blocks away. All I really want to do is stay home, sleep, and forget I even have a family for a little while.

There’s always next year, I guess.

Award Foo

2008-12-05T11:45:00.000-08:00

I got nominated, TWICE! Thanks to Shannon and Amy for the blogger nods. It is now my turn to nominate 5 of MY favorite bloggers (although, I really love reading ALL the blogs, so this is kind of difficult!) In the interest of sharing the love, I'm not going to throw this back to Shannon and Amy (even though they KNOW I think their blogs rock). Here are my nominees:

Tara - Always a positive outlook and a funny story or two about the twinnies to cheer me up!

Ellie - A blog I have only just begun to delve into, but can already tell there is deep insight there, and what can I say? It just speaks to me. (Sorry, no link - this is a private one.)

Melanie - A blog I check daily, without fail, because she is a dear, dear friend, an amazingly intelligent, insightful writer, and I love her. (No link here either, sorry folks).

Jennifer - Another blog that cheers me up, especially now that it's so decked out for the Holidays!!

My Sweet K - You all know I'm madly in love with this guy - but more than that, he is just brilliant and his writing never fails to draw me deeper into him with every word. (Again, sorry for not linking - his is a work in progress, not yet ready for launching.)

Okay nominees, here are your rules:
1. Post the award on your blog
2. Link me for giving it to you
3. Link the originating post nominating you here (is anyone really doing this?)
4. Pass the award on to 5 more deserving people
5. Post these rules for your recipients

2008-12-04T21:59:00.000-08:00

Writer’s block. And the realization that where there’s a will, there isn’t always a way. And the feeling that whatever I might say will reveal too much and yet not really say anything much at all.

To Release or To Hold

2008-10-23T12:00:00.001-07:00

I have always valued people, if for nothing else, than at least for the common link we all share as sentient beings. I have worked very hard, for as long as I can remember, to try to put myself in someone else’s shoes. I have done this for every person: those that hurt me, those that anger me, even those that ignore me. As far back as my memory will allow me to travel, I have pushed away the negative feelings, shoved them somewhere deep into my psyche – dismissed my own pain because someone else’s struggle has somehow been more important to me than my own.

I have strived for perfection, always quick to openly acknowledge my flaws, question my intelligence or interpretation, share my regrets, believing that the very ability and willingness to see these flaws is, in itself, a virtue that brings me closer to perfection. But we all know there is no such thing as perfection.

There is great value in trying to see a situation through someone else’s eyes. There is great value in being willing to see your own role, your own responsibility in relationships gone bad. What I am only just beginning to learn, however, is that the value in these capabilities is only as good as the willingness of the other to embrace these same values. When only one person steps up, eats $hit, and admits to a mistake, the relationship will inevitably continue to deteriorate.

I have been the one to step up and eat $hit my entire adult life, wholeheartedly believing that doing so was the right thing to do for the sake of the relationship. I’m not simply speaking of love relationships either – friendships, community, society as a whole – salvaging all possible relationships has always been more important to me than salvaging myself. Two are better than one, after all. What this really boils down to is fear – fear of being hated, of being alone, of being seen as less than perfect.

But I have only begun to see this. I have only just begun to realize that sometimes it’s okay to speak my true feelings; sometimes it’s okay, necessary in fact, to ask for an apology; and sometimes it’s okay to get mad and let go of that anger. I have not discovered this by myself; it has only been through the safety and security of my relationship with k that I have been able to explore some of these emotions; our relationship has provided the foundation for me that was always missing before, and, while I will never let go of my need to empathize with my fellow human beings, k has showed me that if I continue to empathize at the expense of my own feelings, I will never truly embrace another person for who they are; I will always be waiting for reciprocation, and the very fact that I so quickly offer to take responsibility for the failings of my relationships takes away any opportunity for the reciprocation I so desperately need.

So I am learning to release. And sometimes the best way to learn is to do it wrong. The previous writings on this blog have been part of this learning process for me. As I struggle to let go of so many years of repressing my own hurt to save another from that very pain, I have been less than kind. I cannot apologize for the feelings I have or for my need to express them. But I can apologize for the mistakes I have made in the way I have chosen to express them. I know I will fall down many more times in this process; I will hurt people I never meant to hurt, and I will be misunderstood, and I will eat $hit a few more times than I probably should. But such is the process of growing up.

It has been difficult to share these things today – it shatters my own delusions about myself and forces me out from behind the brick wall of avoidance. But as I said, I am learning to release…

None

2008-09-28T13:02:00.001-07:00

Someone I didn’t know, but who went to my clinic, died on Wednesday. She was only 24.

f cf

2008-09-24T22:36:00.000-07:00

With compliance comes defiance – with every bit of progress I make, I feel more and more pissed off, as if each percentage point of FEV1 earned serves only to remind me of how hard I had to work to get there, and of how very little difference it has really made. I know I will still get sicker; the disease will still progress; the lung function will still ultimately decline.

Because of this very futility, it becomes necessary to celebrate the small things. And so I celebrate: 9% increase, whoo-hoo! And I accept all the pats on the back, the “praise God”s, the various exclamations of joy and presumptions of miracles – in fact, I seek out these responses; they build me up and make me feel as though my sacrifices have somehow been worth it. And these small gains – this so-called progress – helps to instill in others that mysterious whatever it is, that is so often called hope, but can just as easily be called denial.

I am simultaneously overjoyed with happiness and overwhelmed with sadness when I see my numbers go up. I am motivated to keep working hard, keep being “compliant”; I am given renewed hope that maybe some lung damage really CAN be reversed, as I sink further into the denial of the reality of my life.

For the better part of my days, weeks, months, years…I put on a happy face. I try to be optimistic and look forward to the future that I just can’t NOT believe in. I make plans, I set goals, and I still worry about being responsible with my credit.

But you must understand, no matter how optimistic one seems on the surface, there is almost always more going on underneath. There is a constant tug-of-war in my mind, a dueling struggle between the two me’s I so desperately want to be.

I want to be positive in the face of adversity. I want to inspire and motivate. I want to welcome each new day as though it were a gift, and really mean it when I say that living in this body really isn’t so bad – when I say things like “it’s all relative” and “everyone has to deal with some adversity in their lives, this is just mine.” I want to impress people with a wonderful outlook and hopeful, bubbly spirit…

And I want to say “fuck cf” – what the hell is the point? Why am I wasting time catering to this disease? I want to be selfish and say whatever I think, whenever I think it. I want to scream and yell and let myself feel – really feel – the emotions that I so often silence. But nobody is impressed with the person who falls to the ground in agony after being beaten repeatedly; no, there is nothing heroic about that. You don’t see cancer victims on Oprah – you see cancer survivors.

Is there a way to reconcile these two lives, this duel existence?

When the words “fuck cf” no longer come from a place of despair and hopelessness, but from some deep, dark, alien drive to fight back, to rage with a defiance so fierce it cannot be deterred; when what inspires and motivates is no longer superficial fluff and empty words spoken with a smile, but a proud and honest refusal to downplay the realities of this disease; only then will that arbitrary line in the sand begin to blur. The duality will continue, but perhaps two me’s will learn to work as one.

Is this what embracing cf is all about?

fuck cf

Dearest ER Nurse

2008-09-08T16:21:00.000-07:00

Dearest ER Nurse,

I do not mean to be a difficult patient, or insult your ability in any way, but I’ve been managing a chronic illness for nearly 20 years. I’ve had IVs, too many to count, PICC lines-a plenty, lab draws more times than imaginable. I know my veins and they don’t like needles. They slink to the side to avoid those needles or sink deep within, trying to hide from that sharp metal rod aiming for them. In the rare and unlikely event that the needle actually makes contact, my vein will tolerate whatever you are injecting or taking from it for mere minutes – then it will blow, infiltrate, become unusable. And there is really only one vein that begrudgingly participates in this charade. Yes, I’ve been dealing with this for 20 years. I think I know my body a little bit better than you. So no, you may not ‘just try’ for a vein. I will not leave this hospital, my arms black and blue from your failed attempts. My arms will not be sacrificed to spare your fragile ego. And while we’re on the subject, CF is genetic, you idiot – I’ve had it my whole life; it’s something I was born with – so please stop asking me when I ‘caught’ it.

Very kindly yours,
That patient behind curtain 2

Empty

2008-08-25T22:26:00.000-07:00

It’s cold here
Dark, lonely, empty…

Memories of warmth only go so far
How long before they fade?
Will they too, leave me?

The picture says a thousand words
It will not let me forget
It will keep me warm while I wait

While I wait
Can I wait?

It’s cold here

For Kevin

2008-08-23T14:10:00.000-07:00

3-16-08...

As I sat down and began strapping myself in, connecting myself to the tubes, I looked up and smiled. Strips of light streamed through the slats created by my half-opened blinds, as they illuminated the space around him. Like a spirit, surrounded by light, he smiled back at me.

I powered up the machine and allowed it to take over, shaking and massaging my chest, aggressively trying to coax the thick fluid from my lungs. These treatments had ruled my life for so long; they had become routine, almost easy. But they would never be easy. I knew I would always be the last one ready to leave the house, the one holding everybody up, the one to be passed over and forgotten when invitations were mailed. These treatments would keep me ugly; rushing to be included, never having time to ‘pretty’ myself…this was my life.

Until he arrived.

I paused the vibration to cough and, as I did, my mouth filled with the impenetrable goo created by my body’s betrayal. I spit into a cup, forgetting I had a guest. It wasn’t until I heard the familiar hum of the air compressor next to me that I remembered I was supposed to be hiding my cough, my goo, my cf. But as he sat next to me, inhaling the same mist I so often inhaled, I realized he knew all about my goo. He had it too.

When my 20 minutes were up, I disconnected my tubes and watched as he began to strap himself in. It was his turn now.

So there we sat, inhaling our poison, sharing this moment of complete completeness. I inhaled deeply. With my breath’s release, every tension, every worry, every sorrow slowly left my body. The mist from our nebs, brilliant like a soft cloud in the morning sun, filled the space between us. As our eyes met through the ethereal haze, it was then that I knew I would never be alone again.