- I am a 31-year-old sister, daughter, friend, law school graduate, CFer, student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient, lover AND fighter, and dog owner living in NYC's beautiful West Village. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with 10,000,000 other remarkable people, share my disease with 70,000 other beautiful souls, and share my apartment with one really fat mutt with a kick-butt personality. We make it work.
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Monday, December 29, 2008
I've made a couple of decisions lately that are probably either a lot more or a lot less major than I'm making them out to be, if that makes any sense at all. The first is that working full time, at a more than full time job where I'm pretty much expected to be available for 24/7 work (whether or not that is actually asked of me), is just not going to cut it anymore. I still want to work a full schedule, but I think I need to ask to do 10-hour-plus days 4 times a week with a full day off in the middle instead of 5 10-hour-plus-days with the possibility of working all weekend, which is the current schedule. Don't get me wrong, my work is awesome about giving me the time off I need and respecting my boundaries. But junior associates at major NYC law firms are expected to bill ridiculous numbers of hours during the year. Three times already I have had assignments, often lasting a month or more, where I have been asked to work 12 hours a day, 7 days a week. It's part of the job description really, and it's why we get such great salaries and so much flexibility with our time when we're not super busy. But it doesn't work for me - I need a much more regular schedule - so I am going to talk to my job about setting something up at some pro-rata amount of my salary with fixed hours every day and no real expectation that I will be available beyond that. I just have to do it - I have to have the time to take care of my health and do all the "little things" like going to the gym that are quite frankly NOT OPTIONAL for me at this point. In two years I may have already been transplanted or I might still be inactive on the list, but either way I do NOT want to look back and question whether I could have made a smarter choice with work (without giving up my career, mind you) and maybe helped my body.
The other decision goes hand-in-hand with the above: I am going to get a portable O2 concentrator. My sats just aren't great anymore, they dip into the upper 80s sometimes even when I'm not super sick, and my heartrate sometimes goes up to 120-130 just at rest. Not okay, not what I want, and so I'm going to do something about it. I think I've been really resistant to O2 b/c it is such an outward, visible sign of illness. People see a 27-year-old wearing an O2 canula in her nose and they just get freaked out. It's not a cough that I can shrug off as "a cold" or "asthma" or even "allergies", it's not the same as my walking slowly (which some of my friends seem to attribute more to a laid-back attitude than to my health); O2 is a clear and unmistakable sign that something is very wrong with this picture. And I'm not going to lie, that makes me really nervous. I mean, what's the point of getting up in the morning, putting on a smart new outfit and a cute coat, doing up my hair and makeup to look professional and sleek, and then ruining the whole get-up with some ugly piece of plastic? It sounds absurd to me, and a part of me feels like once I step into that world of public O2 something will change forever. Melodramatic, I know, but it's still real.
The thing is, there's this other huge part of me who wants to be healthy. This is the smart half of me, the part that managed to get through a double major in undergrad and an Ivy League law school. I want to be healthy b/c I care about the quality of my life, and I know deep down that I will be able to do the things I love for longer if my heart and lungs are as strong as I can possibly make them. For me, right now, that means making a compromise and giving my poor, overworked body a break. I can still do things like work all day and go out with friends and walk my dog, but sometime in there I need to have a little help so that I can keep going. I can still live alone in my own apartment and maintain my independence, but I have to be willing to admit when I really do need help. This is why the rest and the portable O2 are linked in my mind - they are both compromises and adjustments I need to make in order to PRESERVE the life that I have worked so hard to achieve. At least, that's the way I look at it to help maintain my sanity.
I'm lucky b/c I don't need to go zero-to-60 here anytime soon. The O2 is something my doctor and I both feel I need to have available, but not something I need to be dependent on 24/7. I just want the option of a portable concentrator so I can take it into the office if I need to be on it for a few hours each day. I have my own office with a door I can close and lock - I already do nebs and IVs in there, so what's the difference really? But I'm not going to be rushing out and wearing O2 to dinners with friends. That may be in my future, sure, but I'll cross that bridge when I get to it. And the work schedule is something I have time to negotiate. I plan to bring it up in my January review and get the ball rolling, but I'm lucky not to be in desperate need of a change right this second.
For now, things are good and the air is (thankfully) much more "real" here than it felt up in Denver. I'm hopeful that if anything good can come out of some of the stuff I've been dealing with lately it's the realization that change doesn't always have to be earth-shattering. Even scary things like O2 canulas might actually have a place in real life.
But if anyone knows how to make that tubing just a little more stylish, please let me know ;)
Wednesday, December 24, 2008
On another note, home in Denver for the holidays and totally forgot about that little b*tch called altitude. I was without O2 for the first couple of days/nights here b/c I flew in on a weekend and we couldn't get things set up until Monday. I knew my sats were in the upper 80s or so but I figured it would have to be okay for a day or so. Bad idea number one, for sure. By the time I got the stuff on Monday I was dipping into the high 70s every so often, which was definitely scary for me. So, needless to say, since getting the O2 I've been living on the stuff. I also developed a pretty nasty fever and had to see the my old pediatric doctor today, but the good news on that front is that so far he thinks it's pretty much viral. We started a prednisone burst and Cipro just to keep things at bay until I can get back to NYC and make a plan with my doc now. It's great to have such great medical teams in both cities, but kinda sucks that I needed to waste a couple of my days home feeling miserable from fevers and low O2.
The point of all of this isn't just to warn any Denver-bound cystics to remember their O2 (although that is really good advice, btw), but to point out this: it's Christmas Eve, I just ate my first real meal in two days (fueled in part by the prednisone, no doubt), and I am right now sitting with my mother, father, sister, grandmother, godmother, my puppy, and my parents' two beautiful dogs downstairs in their cozy family room, sipping cocoa and enjoying carmel corn as we all watch "Out of Africa." The table upstairs is set, and my awesome sister was sweet enough to go to the mall for me this afternoon with my list and credit card, so my last minute gifts are under the tree. I even felt well enough this evening to help peel the potatoes and carrots for tomorrow's Christmas dinner and to have a glass of champagne with the family. Tonight we will all trundle down in my parents' house (which luckily has bedrooms and bathrooms to spare) and tomorrow, although I will still have this nasty rotten disease, I will also have some very supportive family, a selection of helpful drugs, and a liberating 50 feet of tubing on my O2 concentrator to help me through it. Thank you God, thank you Life, thank you Universe.
What occured to me this year is the fact that as I get sicker, these kinds of days, nights, and moments mean a lot more to me. I sat tonight, surrounded by family and loved ones, and for one moment I thought: well, if this night is what I have left, then this is what I will savor, this is what I will take with me wherever I end up, and, most importantly, this night is what I will leave behind. And all the fevers and the oxygen and whatever other little dirty tricks CF has up its sleeve won't change tonight. Merry Christmas everyone.
Wednesday, December 17, 2008
I’m about to say something depressing. Be warned. This is not something I would even let myself think, much less say, on most days. It is definitely not the type of thing I would mention to my support system or my friends or any of the other wonderful people who work so hard to keep me healthy (both physically and mentally) every day of my life. This might not be the type of thing that parents of younger CFers want to read, or anyone for that matter, and so I want to give everyone the chance to get out now, before things get heavy. This is raw CF, pure and simple, and it isn’t pretty.
I honestly think my body is giving up.
No, wait, before anyone misreads that, I think my body as it stands now is starting to fail. I have NOT given up hope that things might be better in the future, I just honestly do not think my body is going to fully heal in its current state. This doesn’t mean that I think I’m a goner tomorrow, or in 6 months, or even in 6 years. It just means that I think my body has come as far as it can in actually fighting off this raging sea that is CF and that what I’m facing now is just a last-ditch effort to keep the flood down low enough to stay above water.
I feel as though mediocrity, even “bad”, has become my normal.
Today, for example, I wheezed my way through work. It hurt to stand, it hurt to breathe, and please don’t even ask about walking. I sat at my desk trying desperately not to need to go to the bathroom, just to avoid the pain associated with a short trek down the hallway. Don’t ask me why I feel this way, especially since I just got off IVs about a week ago. I think part of it, at least, is viral – a simple cold spiraled out of control in the way these things do for cystics – but I also feel legitimately like the past year has been a lesson in accepting defeat.
My health has become a comedy of errors.
I got some bad/weird medical news today, which is probably fueling some of this post. No, not CFRD-related, because I actually used the time between the two hours to see another doctor who conveniently works in the same building (gotta love the hospital network system). Anyway, I won’t go into details, and it’s probably going to turn out to be nothing, but the point is that when he told me a possibility that might have pierced my world a year ago, I can honestly say I felt very little. Actually, it was more than that: I felt slightly amused. Not really “funny” style amused, but more just roll your eyes style amused. My first thought was "wow, I can't tell anyone this, because it's just too crazy to even believe. People would start to think I was actually going insane." And then I did kind of chuckle, because with all the hubbabaloo out there about "cystic posers", I'm begining to think that most of us have stories that would make all of theirs sound downright believable.
I’m not beaten down, but I am in a corner.
Please don’t read this post as anything more than it is: the nighttime musings of a slightly overworked cystic. I’m tired, and I just wish more than anything that myself and everyone else who has this disease could catch a short break from the drama. I mean, in what playbook of life does it say that transplants and collapsed lungs and oxygen therapy should be de rigueur? THESE ARE HUGE DEALS! They are life-altering phenomena, and yet for me and some other people I know, they’re not. They’re run of the mill, casual topics for a lunchtime chat, nothing to get all that worked up about. It’s all so absurd when you take a step back from it: how much we put up with on a daily basis without even thinking it’s anything but ordinary.
I promise next time I write won’t be this much of a downer. To be honest, I’m already feeling like this post might come back to bite me in the ass – an embarrassing reminder of the things that sometimes run through my head when I’m really down and out. But it’s all real, it’s the skeleton in my closet, and that skeleton right now is wondering how she came to be as far gone as she is.
Tuesday, December 16, 2008
That's right, I'm taking a two-hour blood glucose test!
Try to contain your jealousy. Please.
For the uninitiated, let me list just a couple of the awesome perks I will be enjoying at 9 am tomorrow morning:
1) A free 5:30 am wake-up call so that I can get my nebs and vest done and get ready for work and take my puppy out before I need to jump in a cab to the upper east side of Manhattan.
2) A not-so-free cab ride through the snow-covered streets of Manhattan to said upper east side (bonus prize: morning traffic!).
3) One breakfast-free morning so I can take "fasting" levels.
4) One fasting level blood draw.
5) Another freebie: this time in the shape of a lightly carbonated, highly syrupy "glucose drink" which is best described as Pepsi after it's been left out and opened for two days, fortified with extra sugar. This will likely be warm.
6) Two hours of chill time in the waiting room. Again, hospital center is on the upper east side and my office is way down on Wall St., so no chance of doing anything productive.
7) Another blood draw!
8) Another not-so-free cab ride, followed by several hours at the office trying to make-up for the time I'll miss during the test.
9) A chance to compete for the ultimate grand prize: CFRD! Just about the best Christmas gift a girl could ask for. Hey, diamonds are for wimps.
Okay, I'm done being a sarcastic b*tch (for the time being, at least). Honestly, I don't so much mind the test. We've been trying to get one done FOREVER and I keep going on prednisone, which messes with blood sugar levels, so I haven't been able to get it in. I'm much more concerned about that last part, because I just REALLY don't want to have anything come back weird with this test. It's been kind of a rough year health-wise and I could use some good news on this one. (And for those wondering what I mean by CFRD, check out more information here.)
So here's hoping it's relatively painless and (most important) that the results come back absolutely normal. You know, so that I can get back to the important things in life...like bitching about blood draws.
Tuesday, December 9, 2008
2) I am officially IV free as of last night. I actually finished the meds on Sunday night but the home healthcare nurse couldn't come to deaccess me until Monday. Sheesh. One of the annoyng things about an arm port is that it is tough to do any of the maintence work (flushing, accessing, deaccessing, etc) yourself. At least it is for me, especially since it's in my upper arm. Basically if it requires more than one hand to do in a sanitary and safe manner, I can't do it. But at least I can plug my own meds in, etc. And I'm free after 4 weeks!
3) Another awesome suggestion from a fellow cystic (props to Amy for this one): I am now recording my O2 levels throughout the day to see if I need O2 at all for activity. This is based on my realization that my sats haven't bounced back as well as they normally do from my last infection. So if anyone out there has any O2-related advice (and I've already gotten a lot from some great sources on CF2), please share.
4) More and more I am realizing just how much CF sucks. I consider myself a positive, proactive person, but the progression of this disease is getting a little overwhelming for me. I try to take it one day at a time, do what I have to do and then move on to the better parts of life, but when I'm really honest with myself I have to admit it's difficult. Lately I have just been carving out a very specific place for CF in my life because I find that if I give myself 10 minutes every night to relax with a cup of hot tea or a glass of wine and really let myself *feel* this disease, then I can go to work and hang out with friends and do all the other things I love to do without dwelling on my CF. Some nights I don't need the time, but I try to take it anyway and use it for something positive, like visualization of my PFT goals or just thinking about all the awesome things I plan to do post-tx. Make sense? Probably not, it's a very personal thing I guess. Everyone deals with things in their own way - for me I am learning that even though I already give CF so much of my time, that time is mostly practical things like treatments, and I need a little something extra on top of that to process the emotional side of it all. And then if CF starts to overwhelm me at work or somewhere less conducive to those emotions, I can sort of sideline that emotion for a few hours knowing that I am not pushing it away, I'm just waiting until I can give it the attention it deserves. At the end of my 10 minutes I pick myself up, shake it off, and get on with my life. It might not be the answer forever, but right now it works.
My puppy is crying. He seriously thinks that the maybe 20 minutes an evening when I'm home and not paying tons of attention to him is total torture.
Thursday, December 4, 2008
Anyway, the point of all this is that as of yesterday the number of drugs in my medicine chest officially went up to a million and one. I added Pulmicort -- the neb version -- which is apparently a corticosteroid similar to prednisone. (See previous posts for my thoughts on prednisone and all its awesomeness.) So now I'm on yet another version of this thing, but I get to neb it this time. It's basically round two, only now it involves more time and takes up more space on my counter. Lovely.
The thing is, I tried it this morning and discovered that, especially when taken right after albuterol, this drug makes me totally shakey and jittery, and it lasts for quite a while after I've finish the neb. Seriously, I was trying to write and finding it difficult because my hands were shaking. It actually bordered on funny: there I was in the law firm and while my brain was perfectly focused I felt like my body was all over the place. I was delibrately trying to steady myself just to keep from spilling my coffee. And yes, I am in fact dumb enough to drink caffeine while already on a steroid rush. Suffice it to say that I think I'll cut the coffee out of tomorrow's routine.
By the way, gotta love the internet. I decided to look up "pulmicort side effects" and found an asthma message board of some kind where mothers were writing in to tell about how their kids had started wetting the bed and chewing their toenails (TOEnails, mind you) since starting on this drug. Hmmm. Maybe I should be thankful I'm just feeling a little ADDish.
I shouldn't complain -- I'm actually pretty excited to see if this helps me keep down my rate of infections and exacerbations. I respond so well to prednisone, despite the side effects, that I'm always really relieved when my doc tells me to go on it again. So this will maybe be a longer term solution, and that would definitely make it all worth it. I just wonder, has anyone else out there tried this drug? And did you find that you had a lot of side effects or shakiness? I'm kind of curious to see if this is going to affect my appetite or my sleep patterns like prednisone does. I never get roid rage or anything (knock on wood), but I definitely do eat a lot on steroids.
Happy drugging everyone.
Tuesday, December 2, 2008
Anyway, the other news is that I get to continue the IVs for another week at least. Next week I will meet with my doctor to see where we are and what to do next. That's not so bad though. Something about this last infection hit me hard and it's taken me a long time to turn the corner into feeling well again, whereas I normally start to feel better within days of starting IV abx. So I agree that it's better to play it safe and really knock this thing out right now. And like I said in my last post, the practical little day-to-day parts of CF I can handle. The IVs and the treatments and the pills...after 27 years, you get pretty darn good at just sucking it up and doing what needs to be done. It's just that I do all those treatments and meds to help me feel good and live my life, so when I'm doing it all and still can't seem to find my footing, well, that gets pretty lame pretty fast. So thanks to everyone who sent me encouraging messages, kind words, and good healing vibes! I definitely feel honored to have stumbled into such a tight-knit CF community.
Speaking of which, I was totally thrilled beyond words to receive a special blog award from one of my CF "Cysters" (who also happens to be an awesome post-tx inspiration). Thanks Heidi! Heidi was nominated for the award by yet another post-tx (times two!) superwoman, Christy. I'm so honored that she then decided to pass it on to me.
1) Amy: What can I say besides this girl is awesome? Not only is she totally fearless about taking frankly terrifying elevator rides up to the Top of the Fog, but she's also hardcore enough to write honestly about the horrors of the CF barrel chest. And that just rocks my world.
2) Steph: I was sooo excited to come across this blog b/c I feel like she and I share so much in terms of experience. More than that though, it's rare that someone is willing to really open up to the world about scary things like transplant evaluations and the decision about whether to get listed (yikes) -- even rarer to do so with such grace and even a sense of humor.
3) Shannon: Her blog has the coolest name ever. She also writes more eloquently than anyone else I know about the struggles of coming to terms with CF as an adult. I'm not a huge comment
4) Tina: Simply put, the bravest and most honest blog I have ever read. And written by the wife of a CFer willing to put it all out there throughout her husband's illness, transpant eval, surgery, and now recovery (yay!).
5) Lisa: Continuing on the "kickass wives of cystics" theme - Lisa definitely meets all the criteria. I love how frank she is about sharing what it's like to be a partner of someone with CF. I also love that she worte an entire novel in the month of November!
There are so many other awesome CF blogs (and just blogs by cystics) out there, but the rules say pick 5. So here are the rules for the winners so that we can keep spreading the love:
1. Post the award on your blog
2. Link me for giving it to you
3. Link the originating post nominating you here
4. Pass the award on to 5 more deserving people
5. Post these rules for your recipients