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Just FYI to anyone who reads this or cares, I have started a new blog at this address:
http://emily65roses.blogspot.com/ |
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This is inspired by Piper's blog post today, calling upon fellow CFers to discuss this issue.
http://amatteroflifeandbreath.blogspot.com/2011/07/blogger-challenge-personal-disease.html
I don't like CF being called "controllable". To me, controllable is like...diabetes. Insulin and careful monitoring and overall you can live a normal lifespan. With CF, you do all the meds and monitoring and it's still a crapshoot whether or not it will work. You just do it because the alternative is to not do shit, and that most certainly will not work. I similarly don't like CF being called mild, moderate, or severe. Virtually everyone with CF will go through all of these phases before it's over. This tends to create a false sense of security with some people (I find this is especially true of new parents of CF children). If it must be described using these terms, I would much prefer "currently mild". Because it WILL change.
I haven't exercised regularly since I had to quit my gym membership. Eventually, I intend to get my favorite cardio machine so I can exercise at home at my own pace on my own time. This is impossible currently due to finances. Do I still consider myself compliant? You fuckin' betcha. Daily I do the following: at least an hour on my Vest, 5 nebs, 2 nasal rinses, all the cleaning required for this equipment. I see my doctor no less frequently than every 3 months (and lately it's been more like once a month). I go on IVs roughly twice a year (sometimes more), I go inpatient when it's considered best. I do my port maintenance. I don't take as good care of myself with eating as I should, but this is also partially a financial issue. It's hard to get excited about eating when you have the same 2 options, day after day. I've been taking Marinol to try to be better about making sure I eat. When I told John today that the only thing I ate yesterday was some crackers and a donut, he looked surprised and concerned. He is currently trying to get Marinol refilled for me. No surprise, but apparently the state doesn't want to pay for it. Prior authorization blah blah.
It's really difficult for me to draw a line for compliance - something black and white where I can place compliant CFers on one side and non-compliant CFers on the other side. It's more a feeling for me. Sometimes it's harder than others to eat exactly as you should, exercise exactly as you should, rest exactly as you should, AND do all the meds/therapy too. But I can tell you which CFers I personally think are compliant vs which are not. It's more a case by case thing as far as I'm concerned. Real obvious cases are of course, easy. A CFer who smokes daily and doesn't do their meds clearly is not the most compliant patient ever.
Whatever center I end up choosing when it comes to tx will decide whether I'm worth the risk or not. If I'm super non-compliant, they won't bother to waste a new pair of lungs on me. As I stand currently, I'm pretty sure they wouldn't deny me based on my behavior. They may like to get me involved in pulmonary rehab before I get listed, but I am very careful with my meds.
Either way, I don't think judging any CFer does any good. Do we still do it? Of course. We're human, we judge. But does it serve any useful purpose? No. One of the CF girls I recently became acquainted with online smokes daily. Certainly I wish she wouldn't. But as long as she knows the consequences of the decisions she's making, she has every right to make them. Same as anyone else. It's hard for me to condemn another CFer, even if they make poor decisions. On the other hand, if a tx center denies someone lungs because they're not med-compliant, I can understand that decision.
Certainly being compliant will add years to your life. But it only goes so far when CF and pseudomonas decide to eat your lungs alive. One of the girls I used to be friends with was super compliant. She did all her meds, saw her doctor regularly, never smoked, she did tube feeds to keep up her weight, and she died when she was 17. What the fuck is that?
It's no excuse, and everyone has to accept what they're given and make the best of it, but let me put it this way... Imagine you put hours and hours of care every day into your health... to still have mediocre health at best. You'll have medicore health for pretty much your entire life, and you'll still only have half the lifespan of most people you know (if you're lucky). Even the most responsible person will have days where it doesn't seem worth it. And I, for one, can't blame them.Attitude:  anxious |
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I'm wondering if I'm very strange here. I often feel like there are CFers with much lower lung function than me who manage to do a lot more than me. I wonder if anyone else experiences this? Or maybe you feel like you have very low PFTs but manage to do a lot more than you would've thought you'd be able? I wonder if it's possible that some people just have a harder time with lower numbers than others?
I know it's in part because I've lost so much in such a short period of time. In August 2009, I was at 101%. Three weeks ago, I was at 69%. So in less than two years, I've lost more than 30%. Seems a little drastic to me, at least. Especially when I went something like 25 years straight being over 100% (with a few dips, but generally I was above 100% all the time).
I am also well aware that I try to do less as a conscious decision in order to preserve myself. In the 10 months I was in grad school (the busiest part of my adult life ever, 15 hour school day once a week as I commuted to NYC, and 21 hours a week at my internship), I was on abx 3 times, and inpatient twice. I went inpatient for the first time in almost 5 years that November. It was also my first case of pneumonia ever. I know right now I'm doing less than I could, as I'm not in school and I have no job. I am well aware of this. I'm just trying to work everything out so that I can work part time and have guaranteed insurance. That way I can do something with myself, but not overdo it trying to work full time.
I know each case of CF is different la la. Each person is different la la. I just sometimes read about the shit other CFers are doing and I'm like "omg I'm a lazy fuckwit".
Input, people? :/Attitude:  uncomfortable Sounds: Supermassive Black Hole ~ Muse |
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I wonder how often I lie to people about how I'm doing. In a variety of areas. I don't ever tell any person how I'm doing 100% honestly. I gleam over personal problems or health problems, or both. People that know me well tend to hear at least one or the other. I think the only person that hears both is Mike. And I don't even come out and tell him everything I'm feeling. I don't really do it consciously or with any purpose that I'm aware of.
I also wonder how much of my doing that is for the benefit whoever is asking, and how much of it is for me. I know at least part of it is for those around me, but mostly I'm pretty sure it's for me.... The weird thing is, I don't want to tell most people whatever is bothering me, but then I get lonely when I feel like I have no one I can talk to. Mind you, I know I have many people I could talk to, both "in real life" and online. I just usually don't want to. It's not even something I can really explain.
Could it be that I want people to think my life is going better than it actually is? I feel like that is probably a big part of it. But anyone who pays attention at all knows it is not going overall too spectacularly lately. Ha. So I don't know who it is I think I'm fooling. In addition to that, I don't know why it matters that I "fool" people into thinking things are just fine. Maybe I don't want people to worry about me? But that doesn't seem to fit. Of course I don't want people to worry but I don't think that's why I keep so much to myself. I truly can't quite pinpoint why it is I do this. I wish I knew. Mind you, I'm not looking for suggestions as to what might be causing it. Just wondering aloud. I doubt suggestions would help me come to find the answer anyway.
Good news for my brain is that I hadn't been writing in my personal journal regularly since December. Just an entry once every few months. I picked it up again and in the last 48 hours or so, I've written almost 30 pages. It's nice to have that outlet. I know everyone has the ability to keep a journal if they wish, but I can occupy myself writing to myself about the same old shit over and over for tens of pages at a time. It's helpful.
This could easily just be the late night and tired ramblings of a fool who can't quite sleep at 5:30 am. I'm often not quite sure where my brain is or what it's doing. Moving on, I'm going to attempt to sleep. Let's hope it works.
"Never opened myself this way. Life is ours, we live it our way. All these words I don't just say. And nothing else matters."Attitude:  listless Sounds: Nothing Else Matters ~ Apocalyptica |
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So I was in the hospital for a week, and I'm back home. Found out I'm allergic to two more meds. Doripenem caused hives, which means Meropenem is off the table too now. And those are on top of the Zosyn causing hives and a fever of 104.8. I hate counting meds out, that sucks. They'll probably have to desensitize me at some point because my shit is so resistant.
Still on IVs, though those end later this week. My main bummer now is that after I left the hospital, I got this really annoying wheeze. I have this shit in my lungs that's very much in the way that I also can't quite reach. It's driving me nuts. So I realized last night that I was doing two nebs differently in the hospital, and I figure maybe that's why the wheeze started after I left. So I am changing to the 7% hypertonic saline, and I'm adding an Albuterol neb (I've always had the inhaler). I'm bummed I have to add at least two more nebs a day, but there it is.
The only other news is only half news so far. My sinuses got awful in the hospital and they did a CT scan and found my sinuses are really super blocked. They sent ENTs in to see me and discovered more polyps in my nose. Last time I had nasal surgery I was 5, so I've gone a long time without it, which is good. But it looks like I'm going to have to have it again now. I have an ENT appointment a week from today, and he's going to discuss the plan with me. He may try other shit first, but it sounded to me from other docs like surgery was going to be the end result. Ah well.
I met the new CF doc and I like him a lot. Another very young, very nice cute guy. I had a bit of a talk with John while I was in. A year or two ago I asked John what his guess was on how long I had in this pair of windbags. Obviously no number in this is concrete, it's all a guessing game until it happens. But a year or two ago when I asked, John estimated I had another 10 years or so in this pair of lungs. I asked him while I was in this last time if my increasingly resistant bacteria changed that at all. John mentioned that I've been exacerbating more often, and they're harder to come back from. In August of 2009, my FEV1 was 101%. I am in the 70s or 80s consistently now. He was honest which I truly appreciate. He said that obviously there's no way to know, but did eventually say that I might not have quite as long as he originally guessed when confronted with the question. I told him I was going to sue him when it didn't work out exactly the way he guessed hahaha. He said it was a fair question, though. A little bit of a bummer, but I wasn't upset when John left because of how he handled the conversation. So that's good at least.Attitude:  hot Sounds: Family Guy on TV |
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In November I was 88%. Two weeks ago I was 73%, so I got a round of IVs. After the IVs, I was 72%. Fack. I also keep losing weight. Not good. John will be calling me next week, probably to go on more meds since the last round did jack shit. Hooray. Blah. My numbers are still very high and I know that, but it's scary when I consider that only a year and a half ago, I was at 101%. That and my SSI is still unresolved. I still have no job.
One of my fellow CFers is having a lot of trouble getting listed for lungs (to where it looks like it may not even happen, according to her docs), even though she desperately needs them.
One of the girls I talk to that had a lung tx less than 2 years ago is now legally blind. They're unsure if it's related or not, but fuck, give her a break.
There's a mom I talk to who has a lil one with CF. I forget how old, but she's in grade school. She's currently back in the hospital, on IVs and steroids and not having fun. And on top of that, her liver is causing very serious problems as well.
One of the woman I talk to, her husband died of CF a few months ago. I still see updates from her all the time about him. I can't even imagine how horrible that must be.
Several of the people I talk to are on a VERY LONG round of IVs (I'm talking 6-12 months at a time) because of a real bitch of a bacteria that seems to be popping up everywhere. Fuck you, MAC.
I'VE HAD QUITE ENOUGH OF ALL OF THIS FUCKING SHIT.Attitude:  stressed Sounds: Viva La Vida ~ Coldplay |
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So I'm still waiting to hear if the SSI / Medicaid situation is getting settled. I have a really big doubt it will get settled. Pretty sure I'll get denied and then I'm screwed. If that's the case, I have three physical options left:
1. Continue not to work.
2. Get a full time job with benefits and work as long as I possibly can.
3. Wait for Mike to get a full time job and legally marry him to get on his insurance.
1. Not really an option. I have debt and bills. I am bored out of my skull. I feel like such a useless piece of shit lump not doing anything with myself and it's really starting to get to me.
2. An option that I'd rather avoid. It'll easily cut chunks of time off my life. It'll land me in the hospital several times, and I may end up losing the job anyway. They can always find excuses to let someone go so that it doesn't look like they're firing you over a disability.
3. Not the best option either. I don't want to force Mike into marrying me for insurance. That's so not how I want my marriage to start. In addition, we can't afford a wedding now. And I know we can always do it later, but I'd like to have at least a small wedding when we get married. In the backyard or something.
I'm just tired of being bored and feeling like a gigantic waste of space. I hope something works out. I'm tired of being almost 27 and doing fucking nothing with myself. *sigh*Attitude:  discontent Sounds: My Love ~ Sia |
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Anyone who keeps track of my facebook knows how this went. But in short, he's doing fabulously. His mom updated me twice daily until Perks himself started calling, texting, and signing online with his new laptop. All his chest tubes are out. He's gaining weight. He's in pain, but doing so damn well. He'll be out of the hospital on Wednesday, when his round of IVs are done.
:)
Nothing much else to report. I'm okay. Just ended a round of Cipro that I don't think did too much. It seemed to move stuff around and help a bit while I was on it but approximately two days after the bottle ran out, I started getting blah again. Ah well.Attitude:  content Sounds: The Abyss on TV |
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My favorite Perks got his call for lungs this morning about two hours after we signed off to go to sleep!! lol
Here's hoping it goes through, and it goes through well!!!!!!
Edit at 4:00 pm: Surgery has been rescheduled, but it has also been confirmed. 8:00pm EST tonight. <3Attitude:  awake |
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Gah, I'm pissed off. Rhi and Skev might have to get a divorce because their combined income doesn't qualify them for state insurance. Which is such horseshit. They are equally as low-income and equally as disabled if they are married or divorced. What the FUCK difference does it make??? Aside from upsetting them and causing trouble?
One of the very few things I want in life is to get married. And if I had to avoid it or get a divorce after it was done in order to be insured, I would be fucking pissed off. It pisses me off FOR them.
Kara had a terrible day because she's trying to get a rx filled. She's been talking to these people every day for months and she told the guy today that her doctor's office never got the form they supposedly sent and the guy goes "that's not my problem". What the fuck, seriously.
I realize our problems are not everyone's problems. I do understand that. But WHAT THE FUCK? We still matter, for fuck's sake. I imagine a lot of people look at us, being such a small minority and just think "eh, just let them die off, who cares?" Maybe you don't, but we do. The people in our lives do. This kind of thing really pisses me the fuck off. BEING DISABLED DOES NOT MEAN WE DON'T FUCKING MATTER!!!
Okay I'm done. Bah.Attitude:  pissed off Sounds: Friends on TV |
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