Wednesday, June 28, 2006

Demon Clinic Round II

So my parents were somewhat indisposed come my next trip to Cleveland, so my Aunt Sue and her husband, my Uncle Rich, and their youngest daughter, Carrie, decided to take a road trip with me up to Cleveland, because they'd never been there and thought it would be fun. (Hah hah!) Carrie, especially, would enjoy it because of the Great Lakes Science Center and aquarium, since she loves animals, particularly ducks (or at least did at the point...not so sure about now). So armed with another lovely itinerary and a small suitcase for the overnight--we were actually going to stay in a real hotel this time, as opposed to the gloom-inducing guest house-- we headed up to Cleveland.

We made good time until we got to the city and discovered that inside Cleveland, or anywhere close to the clinic, there is not an abudance of Days Inns, or whatever. So we drove down Euclid Ave. in search of non-dodgy lodging. Let me tell you--Euclid Ave. is, essentially, 300 blocks of ghetto. I didn't even think that was possible until I saw it. And, of course, it was raining on and off. My aunt, uncle and I were not too thrilled to be in this kind of neighborhood, but Carrie didn't seem to mind, rolling down her window and chattering until my aunt firmly told her to roll up the window and keep it up. Carrie obeyed but I'm not sure if she knew why. :)

Eventually we ended up in a 'suburb' outside Cleveland, about 20, 25 minutes away from the clinic, where we found a Hampton Inn (with a pool for Carrie, eve better) and a Joe's Crab Shack, where we had dinner. The reset of the night was spent in the hotel, since the neighborhood was kind of shady, and we needed to get up early the next day, anyway.

We got out of the hotel quickly the next morning and had breakfast at a 'safe' McDonald's. :) Aunt Sue went with me to the clinic while Uncle Rich and Carrie explored Cleveland's cultural and scientific wonders.

I went through the normal test battery--CXR, blood draws, 6MW (6 Minute walk, for the uninitiated), and all that, including the PFT test that requires you to hold your breath for 10 second while they measure Co2 (I think) distribution through your lungs. The fact that I couldn't hold my breath for 10 seconds really irritated the tech, but the whole time I'm thinking if I could do that, I wouldn't be here! Hello! When we did the 6MW, if my stats dropped even slightly, they wanted to hook me to oxygen. I mean, these people are just chicken littles "R" Us, let me tell you.

I met with a different doctor, who could not believe that I wasn't on home oxygen, given my numbers. He asked me a bunch of questions to see if I needed it, like "do you get dizzy? Lightheaded? Blackouts?" etc., etc. After I answers "no" to all these questions, you could tell he thought I was making it up, or something. So he started talking about home O2 therapy, and I'm thinking heh, heh, whatever. Unless God to me to do it, I wasn't gonna. These guys weren't my docs yet.

Fortunately they let me go, with another appointment in 3 months (they wanted to start seeing me more "often", oh the joy!), and we managed to get home without incident. Until the clinic called a few days later...

Absolutely Crazy...

That would be an adept description of the summer after I graduated from college. Sure, I had a good amount of 'down time,' since my job working for Bush-Cheney didn't really have steady hours, just lots of hours when required. :) I worked several campaign events that summer, including a rally with 15,000 people in Cincinnati, where the Secret Service asked me to watch a certain section of people to ensure they didn't cause any problems and make sure that no one messed with the huge flag someone had put up near one end of the hockey rink where the President was speaking. I have no earthly idea why the Secret Service thought I'd be a good person to watch a section, given that if anyone tried to cause trouble, I probably wouldn't've been able to stop them, since I weighed about 100 pounds. But wahtever. I still got to hear G.W. and got in without having to wrestle for tickets. Indoor events were a lot better than outdoor events because the elements were much more controlled. Later that summer I worked an event in Cambridge on a basebal field, which sounds OK until you factor in that it had poured in Ohio for a day and a half, was still raining as Rob, Branden, some other CRs and me headed down I-70 to the event, and rained harder then not-so-hard as we checked people's IDs and tickets for about three hours, again in the rain. And people couldn't bring unmbrellas into the stadium! It kept up like that until about 1:00, but by then the field was a muddy mess, anyway. What a zoo. At least I had a rain coat; Rob didn't, and had to fashion something out of a trash bag. Branden, of course, had full rain gear, so he was the best prepared of any of us. But like I said, campaign events were fun and you got to learn a lot of behind-the-scenes stuff. The sheer number of people who attended these rallies, and brought their kids and dogs or whatever, always amazed me.

Back on the homefront, I sort of took over as "Mom" when my mom developed some medical problems that summer. I cooked, cleaned, took Mel to band camp, and did the grocery shopping, while Dad finally figured out the mystery of the washer and dryer and crafted an index card of instructions, which he taped to the washer front. On top of all this, I had another appointment at the Demon Clinic in June...

Monday, June 19, 2006

College buddies

So I did this for my high school pals so I will do it for my college buddies...if you're not interested, feel free to skip. :) But I've got to give them something.

In no particular order:


--Rob: You know, I don't even remember how/when we met, but I'm sure it was a CR thing. Later on we were in Student Government (SG) together, and he was speaker our senior year. One of Branden's three roomies. Currently in law school and will make one heck of a lawyer. The one who famously said I didn't count as a girl because I hung out with guys all the time. :) Usually in the thick of our debates. Lots of good CPAC memories, as well as the NYC Trip (and almost leaving Chris at some obscure PA rest stop)

--Alex: or Tor-ner-oooo, as I usually call him. Part of the huge Tornero clan. President of CRs for two years (I think) and the brainchild behind such great CR moments as the PETA (People Eating Tasty Animals) cookout and the John Kerry Flip-Flop Pancake breakfast. Likes to have loud, long religious debates avec moi. He and I took a road trip to Dayton once to take part in a VPOTUS event, which was fun, except for when he broke my sunglasses and we argued over the music. :) Currently working on Sec. Blackwell's gubernatorial campaign.

--Richelle: Remember exactly when I met her--Survey of Brit Lit 1 with Dr. Summers. She hadn't hit her couture stage yet (which she is still in), and had looong hair, wore hardly any make-up, and wore nice skirts and blouses. That all changed very quickly. :) So many good times- NYC 2004 (shopping!), CPAC my junior year, shopping expiditions at Easton and our seasonal dinner parties. EGs. :)

--Branden: already covered in great detail.

--Liz: Now a doctor with the Navy (and in officers' training right now), she was the reason I changed my major from Education to Poli Sci. Awesome, incredibly smart, and pretty to boot. Married to Grant and lives in VA near a beach! (I'm so jealous)

--The Other CRs: Way too many to list, but here are some: Shane, Chris, Andy, Davidson, Candi (who gave me shelter in the honors house after the CPAC 2004 snowstorm!), Sarah, Leah, and all the others. Lots of fun times!

--Steve: While technically a libertarian, Steve is another of Branden's roomies and is a lot of fun, if you don't mind arguing. :) Very intelligent but hardly ever (in his mind) wrong, he can argue about just about anything forever. Great Ayn Rand lover. NYC 2004 trip and multiple CPACs. Unfortunate incident with bedroom door handle... Did ROTC in college, plans to go to law school.

--Janetta: Also in Women's Chorus with me. Awesome girl, my best SAI friend. Had a lot of fun in choir and SAI. She's in Chicago studying Art therapy.

--Kathryn: Also a best SAI friend. We're in the alumnae chapter together now, which is lots of fun. Both of us love Wicked ! (How can you not? Come on!)

There was a lot of overlap--a lot of CRs were in SG, and vice versa (we had an CR SG takeover my senior year...sooo much fun!)

Branden's last roommate, Chris, is now a grad student at WSU. A history major, he was in SG with us but not CRs (even though I suspect he holds Republican tendencies, although we're not totally sure). Host of teh SG bonfire at his place in Groveport, which usually lead to: 1) rock throwing 2) s'mores 3) bottle rockets in the field behind his house 4) one of the guys setting something on fire that really shouldn't have been.

Saturday, June 17, 2006

So now what?

So after a rather, um, tumultuous start to my senior year, I settled in for the second half...the last semester I would ever be in school. Kind of amazing, if you think about it (which I really didn't). I had started to work on the President's re-election campaign with Students for Bush, which was a lot of fun- we did a volunteer sign-up at the March Madness games in Columbus, which was a lot of fun, even though it was really, really cold. :) Classes went well, even if I was taking evil, horrible, class-I-will-never-use Political Research Methods.

January brought the CPAC trip, which was a lot of fun, as usual, except for getting lost on the way to D.C. and the absolutely freezing weather conditions. We saw W. in a motorcade, which was fun, and we got to tour the White House (didn't see the First Dogs, though, which was kind of a bummer). The green room was definitely my favorite, even though I expected the Secret Service folk who worked those rooms to be a wee bit more knowledgeable about the rooms themselves. And the East Room is a lot smaller than it looks on TV. I just kept thinking of Dolley Madison hanging her wash in there. Or Trisha Nixon's wedding. :)

The rest of the year just flew by. I had my twenty-second birthday in April, and graduation was May 7, 2004, at the Cap Center (which was finished my sophomore year). My mom's parents came down (my dad's dad died when he was in college and his mother had died my sophomore year of college) and we had brunch at school, which was nice. Grandma and Pa had been there a few times before, for Christmas Festival and stuff like that. The ceremony itself was nice, even if the speeches were a bit dull, and I had honor cords for SAI and for Sigma Tau Delta, the national English honorary. Tiff was there, too, and Branden and I took lots of pictures afterwards before my family headed to brunch at Bon Vie, on of my favorite restaurants up at Easton.

It was a beautiful day, and I was so thrilled to have graduated on time. That was my underlying goal ever since my sophomore year, and I had done it. :) I was very, very proud and was ready to move on, even though I loved college and all my friends. I would miss the social aspects of it tremendously. But with the campaign ahead of us, I knew there were still good times to be had.

Thursday, June 15, 2006

The Evil Clinic and the Number People

I'mprobably going to commit medical blasphemy in this post by deriding the Cleveland Clinic, but so be it. They are not my kind of people and I am so glad that I didn't end up getting my tx there. But anyway, the details.

Like we know, my docs at Children's wanted to me go to Cleveland and be evaluated just so I was on their radar screen and we could get the process moving. Not a bad idea. They had me meet with a specific doc, Constance something, I forget her name (come on, I only met her once. Give me a break.) Since the testing began in the wee hours of the morning, we went up to Cleveland the night before, armed with a thick itinerary and several maps.

We stayed at the Cleveland Clinic Guesthouse, sort of a Ronald McDonald house for older people, but not nearly as fun. The place was sort of a run-down hotel thing...the lobby was nice, although it was crowded with wheelchairs and the clientele looked a little worse for wear. The absolute worst part had to be the rooms. The hallways were dark and depressing, and the rooms were actually sort of mini-suites, with a tiny kitchen and stuff like that, since the idea is you stay in these rooms for awhile. But they weren't much bigger than your average hotel room, and not nearly as nice as a suite at, say, the Hilton. Dark and drab and very 1960s. So I wasn't too thrilled, especially when I thought of spending three months in this room, since that's about how long you need to be closely monitored after tx. Oh. The. Joy. But for one night, I could deal with it.

We woke up about 6:00 the next morning and drove over to the clinic, which involved Dad becoming acquainted with the wonders of Cleveland's changable lane directions...wasn't that fun! Nothing says 'good morning' like having oncoming traffic heading straight for you. :) The other odd thing is that the clinic appears to only have one public entrance, so me and my mom ended up wandering around for quite awhile in the misty November morning trying to find out how to get in to this place.

Once we got in, I was subjected to the normal battery of CXR, blood draws, and, of course, CT with contrast, which was a lot of fun because by now my veins were essentially shot, and 'adult' hospitals don't do so well sticking me. But we managed (thank God!) to find access, even though it happened as about 6 or 7 guys over 50 watched the tech try to get the vein. The clinic has never, ever heard of privacy...I even ended up in some flimsy hospital gown thing while I waited for the CT scan, which is totally unnecessary. You can change right before and it doesn't take that long. Sheesh.

After all this, we went to eat before heading over to the Krile Building for the actual appointment with the tx docs. I was, as usual, the youngest in the room. We met with the tx coordinator, who told us about transportation to the clinic when the tx happened (since we lived 3 hours away -right on the cusp of 'too far' - we may have had to use a helicopter if the weather was bad. Cool!), and the finance people, of course!

Once in the clinic I did the usual PFTs, a 6 minute walk, and then some other PFTs that are beyond the normal FEV1s, like holding your breath for 10 seconds and the lovely 'box'. I also met with the social worker to make sure that I was psychological able to handle having a tx and that I had a good 'support team' in place for afterwards. And they tried to get an ABG (artieral blood gas)....woohoo that was fun! It involves finding an artery, which is located below your veins, where your pulse is. Well I have a weak pulse and tiny veins, so you can imagine how much fun this was. And the tech was not the nice ones at Children's...he was sort of a 'um, why can't I stick you?' and getting mad at me because I had bad veins! Well, sheesh. After two tries he thankfully gave up.

Finally my parents were allowed in and we met the doc. She was nice, and as she flipped through my chart she confirmed what Dr. M had said- I wasn't ready for a tx yet but it was a good idea to start seeing them. I would come back in June for another appointment and follow-up.

All in all, this appt. wasn't too bad, but I could already tell they were 'number people'--aka, not interested in what I could actually do, but what the numbers told them I could do. My own personal experience wasn't very important to them. That would become more irritating at the next visit, but for now I was just glad that the first experience with Cleveland was over.

Tuesday, June 13, 2006

Senior year

With the exception of the evil roommate fiasco, Senior year was actually going pretty well, with the other exception of stats, which I hated, but I needed to take a math class and everyone kept telling me "Stats in good for politics. "

"You'll need it on campaigns," my advisor told me.

"On campaigns, we hire the number crunchers. They're called pollsters," I said dryly. Like I've said, I am not a math girl in any way, shape or form.

I was also taking Mythology with Dr. Summers, my favorite English prof, who had also taught me Shakespeare (where richelle and I joined a group in acting out Act i, Scene ii of the Tempest - I was Miranda) ; Brit Lit 1, where we read Beowulf in Anglo-Saxton and tried our tongues at Chaucer's Middle English ("In Apryle when the showers shoote); Modern Drama, where I got to read part of Eliza in Pygmalion and Nora in A Doll's House , and Intro to Lit, my first English Lit course, where I had to read Joyce's Portrait of teh Artist as a Young Man (after having read it - and hated it - in AP English), the Oedipous triogy (again), Hamlet (of course) and poetry. On top of Mythology, which I loved, I also had Senior Seminar for English with Dr. Dyck, which mostly focused on literary criticism. At the end of the semester, to the background noise of Gregory Peck in To Kill A Mockingbird , I churned out my 15 page paper on feminism in Mansfield Park (How could I not do something on Jane?!). I finished about 2 a.m. and did well on it. It remains one of my favorite papers.

On top of all this, I was the Public Relations Director for the OCRF (Ohio College Republican Federation), where we had planned a Fall Leadership Retreat in September and were busy planning our annual convention to take place in early April at Miami University, as well as the annual CPAC trip in January. Branden was the secretary of the OCRF, so we spent a lot of time at Republican Party HQ on Fifth St. downtown, running copies and trying to get the anicent, decrepit computer to actually work . I was also chair of the Campus Ministries Student Govnerment Subcommittee, President of Catholic Students' Organization, V-P of Membership (In charge of Rush) for Sigma Alpha Iota and of course active in Capital CRs. There was some burning the candle at both ends but it was so much fun, even with the massive thesis and stats (which I passed, thank God!)

But all wasn't good November my parents and I went to Cleveland for the first time...and that was fun....

Thursday, June 08, 2006

How do you say "crazy, out-of-control, self-centered narcissist?" Like this...

OK, so maybe she wasn't really a narcissist. But my new roommate, who I'd known since my freshman year, was nothing like a nice, understanding, or even freaking normal person. For the sake of privacy I'm just going to call her 'S', although anyone who knew me in college will probably ascertain who I'm talking about.

My senior year I moved into the off-campus apartments that Capital offered to their upperclass students. They were nice, two-story townhouses, with a basement, closet-sized kitchen, great room, one bath and two bedrooms. I shared the larger of the two rooms with 'S', while our other roomies had the second.

I knew that S was something of a control freak, but I had no idea how badly until I moved in with her. The littlest things set her off--dishes left in the sink for an hour after dinner, a brush left on the coffee table, a toothbrush on the sink ledge instead of put away. Yeah, these things can be annoying but that's what happens when you live with three other girls.

She also had an enormous talent for sleeping. I was taking 18 credit hours, including my Senior Seminar for English where I had to write my thesis, and she had T and Ths off with a very light MWF schedule. I was also very involved in campus life, so I was busy as all hell and didn't often get home until 10 or 11 (very, very normal for a college student). She would be in bed by 9 or 10 and wouldn't get up again until 9:30 or later the next morning. I mean, she slept like a cat- a very light sleeping cat. Myself, I can sleep through WW III. The days she had class, I knew she was up, but I kept sleeping. I don't let it bug me.

You may be wondering why all of this is necessary. In the words of Reese Witherspoon in Legally Blonde, "I have a point. I promise." Part of moving in to the apt. meant taking the portable aerosol machine and the Vest with me. They're sort of part and parcel with living with me. S knew that, even though she may not have been aware of what, precisely, it all entailed, no matter how much I tried to prep my new roommates for my stuff. I never just dumped it on anyone. On the days when I had a 9:30 class, I did the Vest quickly and as quietly as possible, definitely eschewing the 30 minutes I was supposed to do it for and did it to be as quick as possible. Was that the best thing for me? No. But you know...

So I didn't think there were any problems (well, at least related to that. There were issues but I digress). Not until one night when I came home about 9:00 and had the stuffing ripped out of me.

First off, S was a very, um 'visible' woman. You could always tell when something was bugging her. But the problem was she would never talk about it and get it out there. I'm Italian--we're big believers in just getting it out there. But S wasn't one of those people. She just lets it boil and boil and boil until woohoo!

I gotta tell you, I have never seen anyone this mad. She was actually vibrating, trembling, shaking, whatever--she was that angry. I think maybe I'd get that angry if someone killed my brother, or my parents or something. Not because I interrupted her at a meeting and my machines were loud in the morning!

This went on for a few minutes until I finally found my voice and said, "well, I have to do them in the morning before class. I do it as quickly, as quietly, and as late as possible so I don't bother you. But it has to be done." She didn't have anything to say to this but just stormed upstairs.

Now I was pretty freaked by this point. I have never, ever in my life had someone yell at me like that . This was pretty much unadulterated fury for something I could not control. I'm sorry I have to do PT to keep me alive. I'm sorry if that interferes with your precious 12 freakin' hours of sleep. But you know, if it's a choice between staying alive and making you, self-declared Queen of the World, happy, then I pick staying alive.

In tears, and shaking myself, I ran over to Branden's. Poor guy-- he'd never seen me like this and didn't know quite what to do with me. I sat on the couch, sobbing, and his other roommates- Rob, Chris, Steve, and Andy from next door - appeared eventually. When they heard what had happened, all of them in a lovely show of loyalty volunteered to go over and show her what for, but I managed to restrain them (something I do regret). I called my dad, who also wanted to kick her butt, but that didn't work either. If S only knew how much wrath she could've incurred....(and still could. In talking about the college years just this week when this story came up, Rob was still disturbed by it. I love my guy friends :)).

I went back to the apt. a few hours later. KJ, another roommate, was still up, as was Nicky and her fiance. Their advice? Just lay low, apologize and don't say anything.

Now I was a bit peeved at that. I was certainly not in the wrong. She was acting like a child, a selfish, spoiled child, and I wasn't supposed to do anything? Um, hell no. That's not cool. "Aren't we just aiding and encouraging this behavior by staying quiet?"

They nodded. "Yeah. But what can we do?"

"Um, not do it?" I suggested. They looked at me like I was nuts.

Nicky was spending the night with Jeff, so I stayed in KJ's room that night, not wanting to disturb the Princess again. KJ's advice was to move the machines to the family room, which was OK if the sound didn't echo (which it did, and our room was right about the family room, anyway) and she still find things to be pissed about. And it was my room, too, damn it. She didn't seem to care about my sleep when she and the others were up until 2 on Sat. night, blaring music and getting wasted while I was trying to sleep in order to get up for 10:30 Mass the next day. So, hmmm.

Fortunately, I moved out over mid-term break and didn't have to deal with Medusa anymore. But it just amazed me how inconsiderate and downright rude some people could be. Here I am, about to visit Cleveland for be evaluated for a double-lung transplant, and her compassion/understanding/simple level of accommodation stops squarely at her own level of personal comfort. Heaven forbid she think of someone else!!

Wow, this was a bit of a rant. But you know, it needed to happen. I had never been so blown out of the water by simple rudeness in my entire life. But she wasn't the only one. KJ did it, too, when I mentioned over the summer that I was going to have to have a port placed at some point because my veins were just shot--after 11 years of IV treatments, etc., there weren't a whole lot of other options except to have a semi-permanent, under-the-skin port placed in my upper chest, under my collarbone (aka, the clavicle). I told her this in case I ever had to do IVs at the apartment and I didn't want to freak anyone out. Her reaction? A wrinkled-up face and an "ew!" Again, not the most compassionate response.

Fortunately, these comments didn't happen all that often. Most of my friends were great about it, and actually showed concern or interest or whatever at the whole tx idea. Steve was always good for a lot of questions. :) I was fortunate to have a lot of good friends throughout this whole process, but the people that were rude/ dumb/insensitive, whatever, really got my goat.

Sunday, June 04, 2006

Summer of changes

That summer was a pretty wild one, as far as summers in my life go. I was interning in Congressman Hobson's Lancaster Office, which I really enjoyed, and learned a lot. Both Richelle and Branden were working there with me, so it was fun and the staff, which included Milia's mom, was really fun.

My relationship with Mark, on the other hand, was not going so well. I had talked to both Tiff and Milia about it, extensively, and looked to them for advice. We were fighting a lot, and nothing seemed to jive the way it had when we first met. Things we had agreed on suddenly were strong points of contention. One day, while at the Congressman's, I decided that I was going to end it. Our phone call that night certainly ran the gamut of emotions, but after about 2 1/2 hours of talking we did break it off.

The first thing I did was call tiff and Milia so we could commiserate with ho-hos, Monopoly, and Strawberry Daiquiris in Tiff's basement. Friends at the best, let me tell you. :) I'm not going to dwell on all the psychological things that were going on, because this isn't the place for it, but it was a very odd next few weeks.

In July I went back to D.C. with Branden and some of our CR buddies for the National Convention, where I went to my first black-tie dinner at the D.C. Hyatt (well I think it was a Hyatt) and heard Karl Rove tell us tales of his CR days with Lee Atwater, which were pretty awesome. Sitting down at the table reminded me of the dinner scene in Titanic , and it wasn't until Branden and I gave everyone a dinner setting primer that we sat down. It was a great convention (parts of it ended up on Fox News), and the Ohio CR Federation won the Best State Organization award, which was pretty awesome. I was also asked by our state chairman to be the OCRF's PR Director for the 2003-2004 year, which really excited me, so of course I accepted. It was so hot in D.C. this time, but we did manage to get in a night walk around the city and see all the monuments, which was really cool. I really fell in love with D.C. this trip, since it was so nice in the summer. We had to get up early for sessions every day, so we would eat breakfast in the hotel or at Cosi and watch the morning commute and see the people rushing around on the sidewalk-- we felt very cosmopolitan. :) Anyway, it was a lot of fun, and a great way to kick off an Election Year.

I had also decided to try living in Capital's off-campus (some off-campus... like one block from campus!) townhouses that year with two of my sorority sisters and another girl I knew. We all moved in August 20, with Branden and his roommates Steve, Rob and Chris living catty-corner from us, and Andy and our other CR buddies living next door. It looked like senior year was off to a good start.


"How is it that even though I have been prepared everyday, I am not prepared ?" --Suzanne Massie, Journey

That's pretty much how I felt when Dr. Patel or Dr. McCoy (I forget which, they both had the conversation with me!) talked to me about transplant being a real option -- rapidly becoming the only option. The reasoning was pretty simple: even though I functioned relatively well for someone with 30-40% lung function, I was quickly becoming prone to insipid infections that were also quite advantageous, ready to strike whenever my system was the least bit compromised. See, the thing is, we never really got rid of the nocardia after the ICU stint--it just sort of went dormant, like Kileuea in Hawaii. But at any time it could erupt again, like it had now. We knew to test for it, and we knew how to treat it, but eventually it wasn't going to work and we were going to run out of options. So instead of talking about transplant once we had reached the slow, steady descent, we had to talk about it now so that I could get worked up (which takes awhile) and listed so that when the time came we could move fast and have everything prepared.

Now I was highly, highly resistant to the idea at first, on a variety of levels. They were (in no particular order):

--Um, I'm still functioning really well. What's a transplant going to enable me to do, fly? I can do everything I want to do, when I want to do it, despite these occasional stays in the "resort." That's just part of life, right? Right.

--I don't want surgery! CF is not a high-surgery disease, and at this point, I hadn't even had sinus surgery, which a lot of CF kids get done. So I was pretty terrified of the whole idea of having my major internal organs replaced, not to mention I got totally grossed out at the mere thought of what the surgery would entail. Um, ew.

--The whole rigid drug regiment didn't really float my boat. The nice thing about CF is that you have a "regimen" but it's pretty adaptable. You have to do PT and aerosols twice (or three times) a day, but it's when you want. I could do it at midnight or 1 a.m., which I did, more often than not, after coming home from late meetings and staying after them to talk with my college buddies. The idea of "you must take these drugs at a specific time or else" didn't really jive with me.

I never said these were great reasons, but they're why I was resistant. Plus, there's the whole mental road block. No one likes to think that their options are running out and that transplant--essentially waiting for someone else to die, so you can live-- is their only option. It's really sobering. It's like step 256,096 on the CF trail, and I felt like we were way back on like step 2,540. We were supposed to have a lot more time, and options--right?? Apparently not. But no one was saying we had to do it today. Dr. M knew that it took me a long time to warm up to radical ideas, and this was pretty radical.

I was discharged after finals (of course!) and spent the Christmas break at home, gearing up for the second semester, where I would take more classes and make up the others (fortunately the only things I really had to do were the finals, since I was there for most of the semester this time). That January, I also went with College Republicans from around Ohio to CPAC (Conservative Political Action Conference) in Arlington, VA. It was an awesome time--we got to hear the Vice-President speak and I met Ann Coulter, who's sort of a conservative idol of mine (my friend Liz says I remind her of Ann, which I take as a very high compliment). It was only the second time I'd ever been in D.C., and it was a lot of fun. Richelle and I went shopping in Georgetown and I got to attend Mass at the Basilica in D.C., which was awesome (although, due to it being January and dark when Mass let out, and the Cathedral's Metro stop being in a sort of shady area, I convinced Branden --a die-hard Methodist-- to go with me and make sure I didn't get mugged).

Traveling with CF stuff could be a pain, but the biggest problem was, believe it or not, the pills. I have a really, really sensitive stomach, and I can only take pills with certain things. I cannot take them with regular water. So I had to make sure I had flavored water, or soda, or whatever with me all the time. I also had to make sure I had enough pills in case we got stranded, it being winter in D.C. (and we took a charter bus in). The machine I could deal with; i had a portable aerosol machine, and most of my roommates didn't ask questions when I hooked it. The problem there was keeping the DNAse (an inhaled drug that 'cut up' the extra DNA in the mucus so that it was thinner and easier to clear) refrigerated. Hotel ice buckets only did so much. So I never knew if it was "good" or not...but oh well. I took it anyway. You just tried to do the best you could when you traveled...

I finished my junior year without much more drama, turned 21 with a par-tay at my house, and prepared for my senior year, which was going to be nuts because I would have to take 18 credits (full load) each semester to graduate on time. But I was so gung-ho on it, it didn't really phase me.

Telethon wrap

The telethon went really well...I'm not sure how much money the hospital raised, but right before my medal presentation they were up to over $3 million, so that's pretty good (at least I think so). I'm not sure what they're goal was, but I like that.

The presentation went well. I was in a group with about 6 kids, mostly boys, except for an 18 mo. old girl from the Heart Center, who was really cute. There were two brothers behind me, one about 4 and the older looked to be about 8 or 9, who were also really cute. You want to see good-looking, adorable kids? Watch this show. :) We were waiting in the lobby of the education center before we went into the auditorium, where the broadcast was, and it was fun to see all the little kids running around. I was definitely the oldest, or tied for oldest with a boy I saw, but I wasn't sure how old he was. Mel took pictures so we'll probably have those up soon, once I get them on the Mac. I also saw one end of the domino transplant, the little boy (Jacob? Joseph? Something like that), and his parents, who were being interviewed by 10 TV's Heather Pick (who just loves these kids, you can tell). He kept trying to take an apple away from his older brother, which I thought was adorable. He looks fantastic, and the whole family looks really happy. It's been about six months now, I think, for them, so things are going well.

A lot of people congratulated me and asked me how long it had been, and were excited to hear it's almost been a year. I can't believe that, myself. :) Things are going really super well...hope it holds up!

After the telethon we went to Mass in the chapel with Fr. Mark, who is an awesome priest, which we knew, but he also gives great homilies that involve candy, which makes the little kids sooooo happy. :) One little guy kept jumping up and down every time Fr. Mark held up another piece. The candy did have a point. Since today was Pentecost, the candy represented different aspects of the Holy Spirit-- Twizzlers (my dad's favorite) for the interconnectedness of believers; Big Red gum for long-lasting faith; red tootsie pops for the sweetness of spirit, and cinnamon for the fun of it (I think). For more on the Mass, head over to my "Poster Girl" blog (link at right). Rita was there too (yay!) as well as Michelle, one of my favorite PICU nurses post-transplant (more on her later). So it was a great day--nice to be there and not get poked!!

We now resume our story where we left off...the first "big" transplant discussion...

Saturday, June 03, 2006

Shamless plug :)

If you live in the Columbus area, tune into Channel 10 tonight and tomorrow for the Children's telethon, because donating money to the hospital is a fantastic thing. They go through so much money per day on the basics that it makes you sick. Those little thermometer strips? 15 cents a pop. Just those! It's nuts. And, as we know, they do great work. So call in, donate whatever, or visit the channel 10 website and Or follow the children's link on the right of this page for more info. And if you watch around 11 tomorrow, I'll be on TV!! :)

What the heck is normal?

"Normal? What would anyone in this family know about normal? The only normal one is Jack-Jack, and he's not even toilet-trained!" --Violet, in The Incredibles

I've done a lot of reading over the years in "survivor" literature, or just from chronic illnesses in general. I suppose I'm just drawn to it. Here are a coupel of things I've noticed:

1) The whole idea of "surviving" is totally foreign to me. It's sounds awfully....well, grim. I mean, with CF, you don't "survive." It's fatal. You don't outgrow it, it doesn't go away. You have it as long as you live. I was reading an article about a man with CF who was the father of triplets and they kept talking about "surviving" or "outgrowing" CF. Um, that doesn't happen. So you don't "survive." To me, that connotates just getting through a day, and not enjoying life at all, not really living. So many people seem to just put their lives on hold while they go through cancer or whatever. But what if you have it all the time? What if it never goes away? You either learn to live in spite or it or you waste your whole life.

2) Normal is completely, totally relative. My life, to me, has always been "normal." It is perfectly normal for me, even now, to wake up in the middle of the night with a pain and wonder what it, if it's going to get worse, and if we have to go to the ER. That's normal. Runs to the ER Sunday morning? Totally normal. Vacations at Children's? Same thing. Blood draws every month, IV antibiotics, syringes and alcohol prep pads on the kitchen table, where there should be food and homework and napkins? Also normal. That's what I knew. I mean, that's life.

I guess it's harder when you've known what the world considers "normal" and then have to be plunged into something "abnormal." But once you're there, the best thing-- the easiest thing-- is to realize that normal is relative, and this , whatever it is, is the new normal. Can it suck? Yeah. It can. But it sucks more, I think, to put your life on hold and wait for things to get better. With CF, they never get 'better', they just get more or less 'good or bad'. So you sort of learn to roll with the punches.

3)Wanting things to be normal is OK--and totally understandable, I guess-- but you can't wait for it. You can't be pining for normal. You've got to just go with it. Life is never 'normal', it's always changing and doing things you can't expect. In fact, I've come to the conlcusion that normal doesn't really exist. Everyone's life is some shade of crazy. As they say in The Family Man , "You get on it and you ride it till it's over." So, either with CF or transplant, that's what I've done. And you know, I think my life is a lot more interesting having not been 'normal.' But more on that later. :)

Thursday, June 01, 2006

Junior Year

So I worked at Old Navy over the summer and attempted to stay healthy, which kind of worked, kind of didn't. I was actually on IV therapy when I started the job, so I had to use the tried-and-true ace bandage wrap cover-up so people wouldn't notice, or at least wouldn't ask. Fortunately that didn't last too long. It wasn't a bad job, but not my favorite thing ever, so I was glad to get back to school that fall.

I took some awesome classes, like Early American law with the second conservative (actually Libertarian) prof on campus, Dr. Mayer, who is so ridiculously smart it's crazy (he's a Heritage Foundation-approved law expert, for what it's worth); choir, as usual; The French Media, which was pretty cool, especially the part when we watched French movies for like 6 weeks, and creative writing, which was fun (well, for me), but it was pretty crazy what some of the others came up with in the short-story assignment. Most of them revolved around aliens or sexual entanglements; mine was a 10 page sketch of a family argument. I've never been in to really fantastic stories and I try to write about things I know. Hence, the argument. (We're Italian, German and Irish-- what do you want?)

Besides my classload, I was also Secretary to the Multicultural Affairs committee of SG, the secretary for Women's Chorus, President of the Catholic Students' Organization, a member of College Republicans (bien sur!), and I was an editor for The Chimes , the school paper, that semester. It was on the Chimes staff that I first discovered the wonder that is Chipotle, so I am forever grateful to our entertainment editor for that. :) We would work late nights laying out the paper on the ancient iBooks with even older Adobe pagemaker software, but it was a lot of fun. I've always loved wiedling a red pen over fresh copy (yeah, that's a bit sadistic, but oh well. I think editors have to be, sometimes.).

But of course, things just couldn't go on being awesome fun, no siree. Right after Thanksgiving, I was back at the resort with another bout of pancreatitis (I blame it on too much turkey :) ). And that's when we first discussed transplant seriously...