Learning To Live

I've got no strings.  It's been 5 days since I finished my home IVs, and a week and 1/2 since I got home from the hospital.  Hopefully I'll be blessed enough to go another 18 months without IVs - but if not I'm okay with that too - the care I got this time was well worth the drive.  I'm going to say again how much I LOVE my new hospital - it's so fantastic.  I'm so glad I made the choice to go farther away to get better care.  In other news, I now weigh 176 - yes, that middle digit is a SEVEN, not an EIGHT or a NINE... when I was in the hospital that middle number became a 9 and it was pretty tragic... but I've lost all that weight since I've been home.  Ten more pounds and I'll be done losing weight and I'll begin the journey of learning how to maintain my weight. I've been keeping busy - knitting, quilting, scrapbooking.  I have so many craft projects going it's ridiculous.  But one scrapbook is done and one quilt almost done....

It feels like I have been here forever.  I've only been here since late on Wednesday.  The getting better is going more slowly than usual - and I'm not happy about it.  I am, however, happy with the care I'm getting.  This hospital is awesome.  AWESOME.  Here is a list of reasons I'm doing awesome here: *My attending is WONDERFUL.  I see my pulmonologist EVERY day - even this weekend b/c she's the pulmonologist on call.  She's so cool.  And stubborn.  She's very stubborn - possibly more stubborn than me.  And she knows how stubborn her CFers are and she doesn't let us pull any crap - not that I pull much anyways, but I pull a little. She insists on writing all the orders for her CF patients even if it's the middle of the night.  I love her. *The nurses ROCK.  Now, I don't want to say that there aren't any good nurses at the U, but it's hard to find a good one - and I don't get their schedule.  And my favorite nurs...

I'm back in the hospital.  It has been 18 months since my last round of IV antibiotics and almost TWO YEARS since I've had to stay in the hospital, and here I am. I think this is day 4 in the hospital.  Technically my 3rd full day here - I came in late on Wednesday to the ER and didn't get a room until about 9pm. I am not at my usual hospital, I'm at the hospital about an hour from where I live.  It's different here - but different good, not different bad.  The nurses are good.  The staff is friendly.  The food is delicious - maybe too delicious because I want to lose weight, not gain it.  The only drawbacks to being far away from home:  Not having as many visitors, and missing all the crazy that's happening at the Capital in Madison.  

I like country music. Not gonna lie. I drive my brother nuts with my admiration of country. He starts to wail and scream if I pause on a country radio station in the car of if I want to listen to the country song that comes up on my iPod. What a baby. I listen to his crap, but that's not the point. Country music is catchy and has a good beat; those two together tend to leave me with the songs stuck in my head. In fall of 2004 I was a freshman in college. I had my own room and was able to listen to whatever I wanted. I became a big fan of Toby Keith's song "Stays in Mexico." Either that summer or the summer before I had seen Toby Keith in concert and had so much fun I became an instant and true fan. In November 2004 I had my appendix taken out. When I woke from the first surgery I made sure I still knew how to do double and triple integrals for my calculus midterm, and then I went back to sleep. The next day I nearly died from blood loss and had emergency sur...

I have mentioned my brother, Darin, is staying with me. He didn't get a summer internship, but has a camp counselor job later in the summer. Until he leaves, he is living with and taking care of me. Before my sinus surgery we did some cleaning and laundry. By "we," I mean "he did the work and I barked the orders." I barked out where to put away all the things I had in my suitcases, where to put clean laundry, how to load the dishwasher, how much water to put in my glass, and how to pour my weekly meds. I sure will miss him when he leaves. The main reason I'm writing about my brother today is because he's amazing. My surgery was figuratively and literally painless. I checked in about 1/2 hour early and was taken to my room right away. Darin and Mom were both very good, but especially Darin. I'm used to Mom taking care of me and doing things for me before and after surgery, but I'm not used to having my little brother there. Darin did wonde...

So this is kind of a long story, but in Adult CF World, patients are not allowed to leave the hospital. In Peds (The Pediatric CF World), we often got passes to leave the hospital for any reason you could think of. Once I spent almost 6 weeks in the hospital (this was in the era before Wi-Fi, so all I had was LiveJournal to occupy my time... it was painful). But in those 6 weeks in the hospital, these were some of the reasons I left the hospital on pass: *To go to class (4 days a week for one hour a day) *To go dancing (yeah, Peds was Awesome) *To go to dinner/brunch/lunch/etc. *To get my haircut *To take a nap in my own bed *To go to the movie store. *To walk out to picnic point. *To breathe fresh air. (On Pass is LEGAL, meaning the hospital knows. There have been times when a parent or a friend has taken me out of the hospital between meds without permission from the hospital). In Adult land, they rarely, if ever, issue a pass for a patient to go to anything. So I just refuse to...

They have given me my 11:30 Benadryl and now I'm SUPER sleepy and have no brain powers - but there are a few thoughts I'd like to share. -Mostly for my close friends - I write a lot of these complaints for my family and friends to read so they can better understand what CF can be like. I hate it here. I'm only at the beginning of my 2nd week here, and I'm going CRAZY. BAT SHIT CRAZY. I don't know when they will let me go home. They won't let me do PFTs - I want to know that numbers-wise I am better, too. I know I'm off the O2, but I didn't know I needed it when I came in, so there's that. I hate it here. This is my sterile prison. And only sometimes is it sterile. Other times, it's just prison. I feel pretty good, so I want to be out of here doing my own thing - organizing things, having fun, doing fabulous things. I'm bored. I'm friend deprived. I'm sitting on my couch watching my trashy television deprived. I just want to go ho...

Today... I received the Percussor 5000!!! I love it so far - and I'm going to be the UW's Percussor 5000 advocate! It's crazy that they don't even offer it as an option here. No doctor came to see me. WHAT THE HELL?!?! I'm supposed to see a doctor every day. I have discovered the love of my life - PANDORA Radio! AND I can use it on my iPhone - my other new love. I love reading news on my iPhone - BBC, NYT, EDGE, ABC - LOVE the news! Loved going through the notebook I usually keep in my purse to jot things down that I want to do, things I want to write, and random ideas. I transferred big stuff to my iPhone notes thingy, and blogged the rest. Took a shower - it's amazing how good you can feel after a shower. I'm off the Oxygen - I can't believe I only thought of this one now... haha. Shows you how much fun my new toys are ;-) ...and I haven't even synced my email and calendar yet... or finished putting in the medical info to my med app - which a...

Today, I was tired. I slept in until 10am (an amazing feat in the hospital) and then after breakfast napped until about 3pm. Everyone kept commenting on my horrible night and how sorry they were and how they hopped today was better - and I had NO idea what they were talking about. Yesterday around 2pm I had a reaction to a medication and had to deal with an abnormally stupid Fellow, but I know why the reaction happened, and now I just take benadryl before that med and I'm fine. So I had NO idea why my night was so horrible. My night nurse, Amy just came on. And right now, I'm going to talk for a second about my main nurses - the nurses I love. I hate when these three nurses have days off, because they know me, we get along, and above all, they really know how to do their job. And they even smile when they come in my room - which makes being here bearable. I have Deb, Erin, and Amy. Bless their hearts, they have made this hospital stay so much better than all my others j...

So here I am in the hospital. I've been here for a whole week. And now I'm bored. I wanted to have my sinus surgery while I was here so I won't have to have TWO hospital stays in TWO months, but that's out, now. I'm going to Louisiana over Memorial Day and you can't fly for 4-6 weeks after sinus surgery. I was pissed. I want to feel better - and I don't want to come back to this crazy place for another year. I am GETTING BETTER (finally). It was going too slowly for my taste, but we added an antibiotic and now I'm getting better - and getting off the o2. Yay! I had my port fixed with what I like to call "mini surgery" because they had to go up through a vein in my groin and pull on it, but I was awake the whole time. Now my port works! And it's fabulous! And now I'm out of things to say because I'm tired.

Hello. This is my first update from this hospital stay. I haven't been in since last August, which is great! I just got admitted today - I wanted to come in, but seeing how low my lung functions were, they didn't really give me an option either. My weekend was busy - Baking all day on Saturday and then UWMBDA. I love my ballroom dancing. I slept all day on Sunday, and noticed a decrease in my lung abilities. Today, I couldn't breathe when I woke up. So I came in. So far - 7 tubes of blood :-) Maybe I'll try and keep a running count - but they sometimes draw in the middle of the night and I don't notice :-) ~Carla

I was going through all my old emails and I found this joke my dad sent me on the first day of a hospital stay: How may doctors does it take to screw in a light bulb? It depends: 1. Why do you need your light bulb changed? 2. Are you sure it's burned out? 3. I've never changed one before, know nothing about them, but now I'm in charge of light bulbs. 4. Light bulbs are expensive, this is unnecessary. 5. This is a "difficult" light bulb, it's uncooperative. And finally a nurse or cleaning person just does it, because it needed to be done, or the patient just changes it herself! Because that is how it works at UW. I have been making a list of things I think all doctors should do before they receive their license. Here are a few of them. * Give a patient a sponge bath or a bed bath. This will give the doctor a little insight into what it is like for a nurse. Nurses work really hard and doctors should be nicer to them. * Be bedridden and be given a sponge bath ...

I hate home IVs. I don't get as much rest as I need. It just doesn't work well. It's not me, because I would rest as much as I need. The problem is my mother. She hates any clutter in my place - and right now it's pretty cluttered from my re-organization project of the summer (which failed miserably. It's now my "Fall-winter project"). She yells at me. She makes me get up and help organize things. She makes me help with the laundry because she's "not my slave." Note to self: do it all inpatient because you can't handle your fucked up crazy mother.

The Friends of Pepe Blog has ended. I'm sad to see it go, because I'm hooked on her story, and these CF stories become my stories. They are what could happen to me - and I want to know how they end. Pepe is very sick and post-transplant a little more than a month. They are recommending a second lung transplant because the pneumonia in her new lungs is just too bad. I want to know what she decides, what she does, and how it turns out. I know that there is a good chance she could die waiting for this second pair of lungs - she was essentially dead when they did the first transplant. I didn't think she'd make it this far... but now I'm deeply saddened that I won't know how our story ends. This is what I wrote on the last post: This has already been said by many times, and I'm sure another CFer has already commented, but FOP, we're sad to see you go. Gina, we hope you continue forward and it only gets better from here. I hope if I am ever as sick as ...

Nothing. Yeppers, I've done nothing. I'm going home tomorrow - but I'm going to be trying to treat it like I'm in the hospital. So I'm going to try and not go anywhere or do very much, but visitors are always welcome! I'm addicted to YouTube. William Sledd. Hilarious. My favorite is still the "Ask a Gay Guy: Hair Edition." I watch it over and over. "Merry Bitchmas" is also entertaining. I know I haven't been writing much - I've been sick for a couple weeks. I was at home, on the couch almost everyday, and then in the evening I would muster my strength and try and go hang out with people. But not much to report. I'm going home tomorrow! And I'll be back in next week Friday for my surgery - and who knows how long they'll keep me hostage after that! Oh well. Maybe surgery will go really well. :-)

I'm really sick. My sinuses are now so bad I can barely stay awake, let alone get anything accomplished. Honestly, I thought about it, and I think the last time I took a shower was Wednesday evening. Ew. It's Sunday and I just don't have the energy. I think I'm going to end up in the hospital a lot sooner than I planned... shit. I'm going to eat something and go back to sleep now. If you would like to help me, please call the cell phone - I'll probably tell you I'm fine, but really I'm not.

Because some idiot posted this: "Jesus christ. Nothing makes you happy, like ever. Suck it up woman. " The walk did make me happy. I just came home and felt really crappy from all the things I had done today - way too early in the morning - and well, I don't know if you've seen any of the photos, but I AM smiling and HAVING A GOOD TIME. And just for that... my next post will be photos from today to prove I have the ability to smile. I loved being with the people who love me. I loved walking with them and joking with them. They are great people. And any time I get to spend with Sarah Lynn is a good time. I'm going to build a boat, and take Darin and Sarah Lynn hostage and move them to a desert island. Because sometimes, they are the only people in the world I want to spend time with. Sometimes, but not today. Today I got to spend time with little kids - and hold Josie and make her giggle. "Is Josie going to ride the bus" "Yes!" "Is...

So I have this post-hospital depression thing going on. It doesn't kick in until I realize that I'm going to be all alone again, and well, I hate that. Today was Great Strides. We raised a ton of money, but it was so cold it wasn't very fun. Plus all that walking sucked. Royally sucked. I don't know what to do about Italy - I guess I have to practice walking??? This was the first year at the walk my whole team didn't stay together and I guess it bothered me. I'm going back to my room to watch more TV (yeah, like a lot has changed since the hospital - still spending time in bed watching TV... except now I can't order my food - I have to get up and get it). Blah.

Did I mention I'm GOING HOME TOMORROW?!?!?! I LOVE that I'm going home tomorrow!!!

I GO HOME TOMORROW!!! I GET OUT OF HERE AND GET TO SLEEP IN MY OWN BED!!! And I got exciting news from Chris and Kyra - but I'm not sure if I'm allowed to share it here yet. What I know now is I'm exhausted and just want to sleep for the rest of my life. But not really - I am excited for the CF walk! :-)! It's on SUNDAY!!! That's all I have to say for now. I'm too sleepy to be very clever.