Saturday, November 22, 2008


I am officially sick of being sick. Today marks day number 9 since I started my IVs (day 5 since I started the CORRECT IVs though) and I have definitely hit my limit. I can totally handle staying on the drugs for three weeks, but I honestly can't take much more of this whole feeling like crap thing. Hear that lungs? It's getting really old.

Yesterday I finally bit the bullet and asked work for some real time off. Not my normal "I need a couple of days to check into the hospital and I'll be back the minute I'm discharged" routine, but honest to goodness time off for my body to heal. As in, the entire rest of the month. Asking for it was one of the hardest things I've ever had to do, lame as that sounds. Seriously, how spoiled am I that I count sitting down with the most understanding people in the world and asking for what is technically only about 5 days off (holiday doesn't count, obviously) as such a traumatic experience? It really was though. It's like the IVs: I can handle the practical parts of having CF -- I can do to all the doctor appointments and do the tests and gaze at the x-rays and even talk to people about being evaluated for lung transplant -- but I totally freeze up when this disease actually threatens to interfere with my LIFE. I know it sounds really trite, but I was lucky enough to find a job that I love with people that I really enjoy working with, and I hate hate hate feeling like I'm not pulling my weight or living up to their expectations.

I miss my job. I miss my friends. I hate getting on the phone with my family and hearing their voices so filled with concern and worry. I hate seeing my puppy forlornly curled up over by the door to my apt waiting for a walk that I just don't have the energy to give him. I hate feeling like such a complainer. More than anything I just hate CF.

I know that with time and rest these IVs will do their magic and I'll be back on my feet. I just hope that time comes sooner rather than later!

Sunday, November 16, 2008

Five Days Later

It's been kind of a difficult week, on and off IVs. That's right, I did say off IVs. I stopped them on Friday, after I started running fevers over 103 degrees from the Zosyn. So far I haven't been able to start them up again, which is frustrating. That means that since I lost Wednesday from waiting at the hospital, I've actually only had one full day of IV treatment, despite having missed 3 days of work and a whole weekend's worth of social life. I hate to sound grumpy, and honestly I don't feel horrible, but my O2 sats are still around 88-91 while awake without oxygen, which isn't too great. And I'm still coughy and exhausted. I don't really know what to do because I was really planning on and hoping to go back to work tomorrow, and now I have to reevaluate whether that's honestly possible. I thought I would have been on a full 5 days of IVs by now, and that would mean that I would feel rested and pretty healthy. Instead I feel kind of run down and frustrated.

Most cystics could probably write a novel about healthcare frustrations. Hospital stays (or lack thereof in some cases), drug reactions, homecare companies, insurance issues . . . you name it, and I'll bet there's a cystic out there with a story you wouldn't believe. In the grand scheme of things, a couple of days of missed IVs and a botched hospital admission probably don't rank too high on most people's list. Hell, they don't even rank that high on MY list, to be honest. It's really more of an inconvenience than anything.

But on the other hand, after how much many of us fight to stay healthy, "giving in" and admitting we need extra help (from hospitals, IVs, employers, and caretakers) is never easy. To
screw up your courage, bite the bullet, ask for the time off, face the questions and the worry, accept the offer of extra help from a friend or family member, pack your bag for the hospital, and then have it all go to pot right when you feel too weak and miserable to really take control of the situation . . . well, it sucks. Maybe some of the fault lies in the healthcare system or with the hospital administration, but in my case this time a lot of it was just bad luck and the joys of getting older with a progressive disease. I know I'm not the first CFer to develop an allergy to a drug that used to work great for her, I guess I can't be too angry about it, but right now it's still frustrating.

So there's my rant for this evening. On a more positive note, I finally received my new drugs today (still on tobra, replacing the zosyn with merrem). Hopefully within the next couple of days things will pick up dramatically, and here's to no more setbacks.

Wednesday, November 12, 2008

Home again, home again

Yeah, I'm home. I didn't end up going in at all, obviously. I got to the hospital at around 11 and checked in at the admissions desk. Then the waiting started. Like any good CFer, if I am one thing, it is patient in hospitals. Not A PATIENT, but just plain patient. Hospitals are all about the "hurry up and wait" mentality, and in my experience NOTHING is ever accomplished without at least 30 minutes in some unknown waiting room (or worse, in the hallway if infection is an issue). This seems to magically hold true even for tasks that in other situations would take less than 20 seconds: getting a box of juice from the fridge, perhaps, or making a quick copy of my insurance card. While at one point in my life I considered this a great mystery of life, worthy of scientific study and maybe even a well-phrased complaint at the customer service desk, I've since learned to just accept as truth the fact that things in a hospital run on "hospital time." I've also learned that while surely someone somewhere out there is to blame for this, it's probably not the harried woman sitting behind the admissions desk. It's also not my doctor. These small but important truths have helped to make the ideal waiting room patient. Show me a hard plastic chair in a poorly lit room with bad ventilation and I'll settle in for the long haul. At this point I think it's just in my genes.

So yeah, the waiting. I waited, and waited, and waited, and I was fine with that. Really. So then, at around 3:30 (after several hours of waiting room bingo) I finally learned that I was going to room 413. I was nodding my head and gathering my bags when the woman adds, nearly under her breath, "bed 2." Um, excuse me? This room isn't private? Which is when I learned that absolutely ALL private rooms in the hospital had previously been booked and that patients meeting strict isolation criteria were still have problems getting placed sans roommate. Apparently every single person living on this island decided to show up today at my hospital's doorstep and demand not just a room, but a private one. With a view of the river, if possible.

So I called my doctor. We talked it out. She explained that there was absolutely no danger to me, that she would never agree to allow me to be placed with anyone who posed a threat (something I wholeheartedly believe b/c she is the most amazing doctor I can imagine) and I countered that I just wasn't comfortable with the whole situation. No other options were available at the hospital, so we eventually reached the conclusion that I should just go home and do IVs from here. It's not ideal, b/c one of my drugs needs to be administered 4 times a day every 6 hours and I live alone, but in the end it was the only position we both felt okay about. And honestly, I am SO relieved. I actually had tears in my eyes during the whole ordeal, and I am not one to cry about these sorts of things. I was definitely overwhelmed, and I love my doctor even more for working with me.

I feel terrible for being "difficult." Even though I know this was the right choice for me and that ultimately I did what I feel was the safe thing, I still can't stand that I had to cause such a fuss to make it all happen. I hate not being a good patient, but I also know that sometimes that means more than just doing what you're told.

Tuesday, November 11, 2008

All my bags are packed, I'm ready to go...

So I check into the hospital tomorrow. I'm okay with it all, I guess, and it should be a short stay (my doc mentioned 3 to 5 days), but still...never fun to go on lockdown. Today I got tons of really comfy clothes and some new books for the stay. Hopefully I'll have internet while I'm in so I should be updating. If not, I'll post all about it as soon as I'm out.

The worst part is leaving my puppy. I tried to explain that when I get out I'll have lots of energy and be able to take him on really long walks, but I don't think he really gets it. Here's to wuick recoveries!

Friday, November 7, 2008

Beautiful words

As a cystic who has always considered herself an optimist, but who has recently struggled with a feeling of cynacism towards people who seem somehow overly optimistic or naive about CF, I found the following really wonderful to read. Written by the wife of a CFer, this post is touchingly optimistic and inspirational while still acknowledging the struggles and reality so many of us are facing. If you get a chance, I recommend reading, because she found the words I have been searching for without success for the past two years:

PS: the rest of the site is cool too!

Wednesday, November 5, 2008

Deep breaths...

I took someone very special to me out to dinner tonight for his birthday. We had been planning it for a while and I took him to a really cool authentic Japanese restaurant out here in NYC. You know, the kind of place where it takes a certain amount of courage to even order, but then you find yourself being pleasantly surprised? The food is awesome, and he loves Japanese so I thought it would be perfect.

Thought is the operative word there. I felt fine this afternoon...a little rundown but no big deal. Then I showered to get ready for dinner. Started coughing up tons of goopy junk. Gross. It got so bad I had to sit down in the shower to catch my breath. And it just kept coming and coming. My throat was on fire. I pulled myself out of the shower, made it to my bed, and proceded to spend the next 30 MINUTES just putting on jeans and a top. My hair was dripping wet, my dog was upset because something was so clearly bothering me, and I could not make it back to the bathroom without gasping. I tried to put on my O2 just to get ready and catch my breath, but honestly when I looked into the mirror and saw myself gasping, O2 canula on my face, wet hair hanging down, and now with less than 15 minutes before something I have been really looking forward to, well....I just sank down onto the bathroom floor in tears. Too much, too much. I feel like I can handle this disease most of the time, like I kind of have a grip on my own reality and have learned to excel while balancing my own needs and limitations. But seeing myself in that mirror was like looking at some sick stranger. I could not, for the life of me, connect myself with that gasping girl staring back at me.

I know most of you are waiting to hear about how I made the smart choice and curled up in bed, O2 safely on, to rest and relax my body. But I didn't. I picked myself off the floor, dried my hair, put on makeup, and went out to dinner anyway. And I tried desperately to seem okay, even at one point snapping at my wonderful companion when he asked if I was alright for the fifth time. I told him "How about I just tell you if I'm ever NOT alright, okay?" God, what a cruel thing to say to someone who was just trying to protect and help me. But I couldn't help it...all I could think about was that I had to push this CF aside, had to make it through this evening that I so wanted to make special.

Now that I'm back at home, I don't know that I regret going. I did what I did, and I'm sure in the long run going out and eating a good meal wasn't the worst thing I could do for myself. I even feel a little better now having moved some of the gunk around during the coughing. But I know something's not right, and I just hope that it's a one-time bad moment, brought on by too much excitement between halloween, the marathon, and the election. Maybe if I stay home tomorrow and really rest I'll feel better. Or maybe tomorrow I'll wake up feeling fine. CF is tricky like that.

What I do know is that tonight I was challenged by my disease. Challenged to confront my sick self and make a decision. And I made that decision, in the only way I knew how at the moment. But tomorrow, if challenged again, I hope that I'm strong enough to reach out and ask for help if I need it.

Monday, November 3, 2008

I Cough, Therefore I am?

Okay, I have CF. That means I cough. And I also have a life. That means I tend to leave my apartment and go out in public. So, logically, I am sometimes going to cough in public. It's certainly not my favorite thing to have happen, but it's life, and I deal with it. In the long run, there are a lot worse things than the occassional coughing fit, even if that fit does come in the office, or the supermarket, or even (horror of horrors) the elevator.

Unfortunately, some people seem to think that coughing in public gives automatic license for them to know every little detail of what's going on with my health. Don't get me wrong - I understand the impulse. I'm actually very sympathetic to the germaphobes, because I tend to be a little cautious about going near people who appear sick as well. But the difference is that I typically try to handle things discreetly, without bothering the cougher/sneezer/whatever, and certainly without calling any unnecessary attention to the situation. Most of the time I'll just quietly remove myself from the area around the possibly ill person, and if possible I'll do so in a way that looks natural and not offensive. Hey, it's just being polite as far as I'm concerned.

As an experienced cougher I am NOTHING if not polite about my public cough. I cover my mouth, if possible I cough into my shoulder, and I'll purposefully turn away from people around me if I can. But still, the looks and comments come flying. The other day a secretary at my law firm commented that "everyone on the hall is wondering what's going on in here" because of my coughing. She went on to jokingly accuse my co-worker of strangling me. Um...awkward. Other comments are more general, "nasty cough you've got there", "you should be at home in bed!", or my personal fave: "you know, if you stop smoking now that cough will probably go away. You're young enough!" Ouch. Nothing more annoying than being accused of a lung-destroying habit when you devote hours every day to keeping your lungs HEALTHY. But by far the worst comments are the ones that actually imply that I have no right to be out in public because of my cough. Without bothering to remove THEMSELVES from the situation, some people seem to think they have every right to pointedly instruct me that I need to stay away. I typically respond as politely as possible, but I'm not above shaming these folks with an equally pointed comment about CF being genetic and not contagious. Unfortunately with most of the rude ones, this information doesn't seem to make much of a difference.

There are all sorts of articles out there about how chronic coughers are seriously prone to depression. I believe it. On the other hand, I try to remember that the people who stare, or comment, or downright insult just because of my cough are really just expressing their surprise that someone who coughs like I do can still do everything they can. They're stunned to see me (or hear me) coughing in the office because they know that despite that cough I'll still make the meeting this afternoon, and that while my cough might come and go, my attitude stays pretty consistently amazing. They stare and they comment because they quite simply do not understand.

So yeah, I'm tooting my own horn, but I think it's appropriate for all cystics to look around every so often and realize how amazing it is that we do all we do. More and more I meet CFers who are working, or raising families, or running marathons, or just out living really awesome lives. And all this despite, or maybe even because of, the coughing.

Sunday, November 2, 2008

Marathon Sunday

So today was this little thing called the New York Marathon, which normally just means kind of a hassle since the whole upper half of the city is basically impossible to navigate. Not this year! My friend Molly and Spencer Williams were running the marathon for the CF Trust! So needless to sayI had to go cheer them on. After donating to their wonderful cause, I hauled myself up from TriBeCa all the way to the Upper East Side. We were planning to watch them go by at 65th and 1st Ave but unfortunately the route we took put us on the east side of the street. All their other friends were on the west side and there was no way to cross. But we did get to see them go by! We just didn't get to be in their little cheering section. They looked so awesome in their bright neon yellow CF Trust jerseys. The jersey said See Off CF under the CF Trust logo. It was very cute.

Once we saw them go by we decided to walk to the finish line. On the way there we passed the CF Trust official station, so I stopped to talk. The organizers told us that they had 75 people running for them! Wow. So between them and Team Boomer I'd say that the Cystics were well represented! We chatted with them for a while and heard all about how the trust has been fundraising. It's so neat to connect with people like that over a cause.

So then we walked all the way to the finish line, which was fine until about the midway point, when I started an all-out coughing fit. Lovely. I think this might have something to do with the fact that I was out until about 4 am on Friday party-hopping for Halloween. Whoops. Oh well, at least it helped emphasize to my friends why so many people were running for CF. As if they needed more convincing.

Got to the finish, watched my friends run by yet again, cheered wildly. Right as we were leaving a guy came to take our spot at the gate bordering the race route. He started spreading out an Irish flag and then I noticed a logo on it. It said Irish Cystic Fibrosis Association! Totally random. Anyway, so then I introduced myself and he said he was the fundraising chair for the foundation over there. He said that they had two CFers running for them (out of 15 spots) - a 28 year old woman and a young man who is 21 and just found out he has cepacia. I was super impressed. He mentioned that he was going to stop by the Team Boomer party tonight, which was also cool. We chatted for a few minutes and he was really amazing. After we left my friend turned to me and said that between my friends, the CF trust station, and the Irish guy it felt like the whole race was dominated by CF. Talk about spreading awareness. I felt so proud to have been a part of that sort of amazing energy for such a deserving cause.

Anyway, the best part is that a couple of my friends have decided to try and run next year for Team Boomer. They wanted to run anyways and being out there seeing all these awesome people working for CF convinced them that they would rather run for a cause they care about than just as an individual. I feel super lucky - how did I get so many fantastic friends? Seriously.

I love Sundays like this. Brunch with friends, a truly New York activity, and then such a wonderful show of support from so many people who really care about CF. Makes me feel like I'm not just a random burdensome friend who slows the group down. The way they were all cheering and chatting with the people from the different CF groups and then deciding to run for the cause made me realize that they don't want to just ignore my CF and they don't just think of it as an annoyance. They, and a whole lot of other people, are really invested in curing this disease, and they're proud of me and the active role I try to take in spreading awareness. Just made me feel so special for the day. And yeah, I know I'm gushing, but sitting here with my puppy and thinking back on the day, it's hard not to want to gush. I guess I'm just that lucky.

To all those who ran, have run in the past, or will run in the future - you are truly rockstars. Congrats and thank you!