Learning To Live

I don't particularly feel like talking about what has happened today, so here's the short version: I lost my CF doctor - he told me that if I wasn't going to take his word as law then I need to find a new CF doc. My CF doc told me I was crazy, Spiriva couldn't cause the problems I am having, I'm crazy, my parents are in denial that I am crazy, I'm crazy, my psych meds are causing my problems (then why when I stopped the Spiriva did I start to get better), I'm crazy, he is right I am wrong, I'm crazy, there's no way I could have a lung infection, and oh yeah, I'm crazy. Turned out I was right and he was wrong. I was right - I'm sick with a lung infection and I'm now on IVs. I went without my O2 for most of the day!!! (That's the ONLY good thing that happened today) Because my CF doc wouldn't see me in clinic or even order a simple set of PFTs for me I spent 6 hours in the ER. (He wouldn't order them b/c they "wouldn'...

I do believe I'm finally on the road to better. YIPPEE!!! Right this moment I feel better than I have in months!!! It's actually hard to believe I feel okay... and harder to believe that it might last! Now, this is not to stop people from using this med, I'm sure it worked fine for some other people, but for me Spiriva was probably one of the most harmful drugs I have ever been on. It's a bronchodialator (opens up the airways) but it looks like it gave me paradoxical bronchial spasms (instead of opening the airways it seemed to close them. Oops). That explains the increased heart rate, the inability to keep my O2 saturation up, the exhaustion, etc. etc. etc. I have stopped the Spiriva, and already I'm feeling better. It looks like the Spiriva prevented me from coughing up the nasty stuff in my lungs, therefore making me worse. I may need to do another round of IVs, but after that and when the Spiriva finally completely clears my system I should be able to wean...

Today I spent all day at the hospital and nothing happened. We have no idea why I need oxygen and as a result I can't get portable O2 to take with me places, thus rendering me house-bound. On Saturday we went to the Urgent Care center and the 3 minute walk with the doc brought my O2% down to 88 showing that on exertion I should be using oxygen. I spent all day Sunday on oxygen and felt much better! Saturday we ruled out mono as a possibility. We were pretty sure that it was just the natural progression of my disease. I was willing to accept that and move forward with my life. Today at pulmonary clinic, they had no clue why I would need oxygen either at night or during the day. My blood gas was NOT normal - my PO2 was 72 - that's not a good number. And for some reason they won't admit that there's something wrong with that. OR the fact that my pulse goes up to 130 when I walk. They won't acknowledge that issue either. They had me do an emergency CT Scan bec...

Looks like I will now be on oxygen full time now. We'll have to get it sorted out on Monday and get portable stuff arranged so I can go places. I will write about more of this later, but for right now: 1) This won't keep me from dancing. I'll dance anyways. 2) I'm going to Italy anyways. That's all for now. I'm too tired to say anything else.

Although it is 6:15pm I have now convinced my body it is morning by using my SAD light - the light that mimics the sun to fight seasonal depression. Since I have been out of the house once in the last week I may be suffering a little from cabin fever and lack of sunlight. And I have to admit I do feel a little better after using my light, but not well enough to finish the laundry I started last weekend. Either yesterday or the day before I washed load 2 of 3, but I haven't gotten around to drying it for 8 minutes and then hanging the clothes to dry the rest of the way. At least I'm keeping up with the dishes. I'm failing at everything else - including staying awake - but at least the dishes aren't piling up. My first team dance lesson of the semester is tomorrow and I'm very nervous. I have no idea if I'll have the energy to get there, let alone dance. I'm vice-captain of the team and I have no idea if I'll have the energy to dance this semester...

CF is so many smiles when we're young. Playing in the yard, swinging on swings, going to the zoo. Childhood is carefree even for a CF child. My smiles faded into worries as I got older. I learned what was inside of me and how it was going to hurt me in the short term and in the long run. I realized the severity of my disease and the risk to my life and my smiles faded. Slowly, over the years, I have fought my CF and given up many tears. Through all these tears I have realized the best way to fight CF is with smiles - the youthful, worry-free smiles of childhood.

This freaked me out a little... a little of the paranoid thing going ;-) It's an "analysis of the meaning of my name" and it turned out to be very, very true. Almost scary. What Carla Ann Means You are very open. You communicate well, and you connect with other people easily. You are a naturally creative person. Ideas just flow from your mind. A true chameleon, you are many things at different points in your life. You are very adaptable. You are usually the best at everything ... you strive for perfection. You are confident, authoritative, and aggressive. You have the classic "Type A" personality. You are wild, crazy, and a huge rebel. You're always up to something. You have a ton of energy, and most people can't handle you. You're very intense. You definitely are a handful, and you're likely to get in trouble. But your kind of trouble is a lot of fun. You are relaxed, chill, and very likely to go with the flow. You are light hearted and accept...

Ya'll know me... some of you don't. This usually wouldn't be my thing, but I like it. It was on someone else's blog, and I copy-pasted. I think it's really fitting for my situation, and for many others - maybe everyone. "We complain about the cross we bear, but don't realize it is preparing us for the dip in the road that God can see and we cannot." "Whatever your cross, whatever your pain, there will always be sunshine, after the rain.... Perhaps you may stumble, perhaps even fall; But God's always ready, to answer your call.... He knows every heartache, sees every tear, a word from His lips, can calm every fear... Your sorrows may linger, throughout the night, but suddenly vanish at dawn's early light... The Savior is waiting, somewhere above, to give you His grace, and send you His love... "

First, you can go here to see My original montage. My condo cannot be considered "small." Especially when it's just me here. And for the last week, it's been just me. And more me and me and me and me. Yes, I have a nurse who shows up for 20 minutes per day, but besides that and my internet contact I am alone. I feel like the 2,400 sq. feet I'm living in is shrinking and I can't escape. It's currently too cold or snowy or both for me to go outside. My lungs do not like the cold, and even when I'm bundled I usually end up coughing for an hour after I've been outside. It puts a damper on hanging out with people if you violently cough for the first hour. I know. It happens all the time. As a rule, the more the merrier. I honestly don't like being by myself. I'd rather have a hundred people to talk to than be by myself. And being stuck alone by myself is worse. It drives me nuts and I get very bored. I watch movies and TV, knit and...

You breathe, I breathe, even the terrorists breathe. Some of us just have more trouble than others breathing. I happen to be one of them. I know my lung functions could be a lot worse, but I'm not happy with where they are. I will now try to explain PFTs in as few words as possible. Pulmonary Function Tests - lung tests. Spirometry - the most common lung function test. I breathe in REALLY deep and blow out the air as hard and as fast as I can... and keep blowing until there is no air left. There are three numbers they mainly look at: First, FVC - Forced vital capacity , the amount of air a person can expire after a maximum inspiration. The total air out is the FVC. My FVC is running about 90% predicted when I'm healthy, about 75-80% when I'm sick. I don't like those lower numbers. The second number is FEV1 - Forced Expiratory Volume in 1 Second. This is the amount of air I force out in the first second. My FEV1 is about 60% when I'm healthy (not happy...) and...

According to the US government, as of 1/14/2008 there are 97,899 people waiting for organ transplants in the United States. When I was a sophomore I wrote a speech on organ donation. I'm going to represent that speech, but keep in mind, it was much more dramatic when I gave it out loud, instead of in print. Also, remember that I wrote this when I was healthy, before I thought about transplant seriously, before I knew people who have had transplants and before I met the girl my speech was about. This was before I met her when she was dying in the hospital waiting for her second lung transplant. I still feel just as passionate about becoming a donor, and I am that much closer to needing a transplant of my very own. Organ Donation: For her, walking up the stairs to class felt like climbing Everest. Standing in the lunch line once took her breath away, literally. After that her friends bought her lunch. And the prom? Forget it. Can't shop. Can't dance. Can't eve...

"Its no use, he sees her He starts to shake and cough Just like the old man in That book by Nabokov Dont stand, dont stand so Dont stand so close to me" That song. Over and over and over. Sting sings it again and again and again in my head. I can't get rid of it. Maybe I don't want to. That song. I used to listen to it every day on the way to school. My little brother was in the car and never figured it out. We went to the same school and he never knew how tortured I was - how tortured I still am. The song still tortures me - reminds me of being tortured, but it also empowers me like it used to. That line "Just like the old man in that book by Nabokov." That empowers me because in the book the old bastard dies, and that's all I want. I don't think his death would bring me any peace. I don't think the nightmares would stop. I don't think it would make going back to my hometown easier. The reminders of driving around for hours so n...

My name is Carla. Welcome to my new blog. I have many ideas about what I want to do with it, but I'm just not quite sure how to put it into words yet. I will be trying to update this everyday, and hopefully I will have something insightful to say on a daily basis. This is the latest montage I have created using onetruemedia.com http://www.youtube.com/watch?v=LlNj_RKhJi8 The song is by Robbie Williams. I have also posted links to my YouTube collection of CF videos - other montages, etc. Things that usually make me cry and sometimes give me hope. Usually they make me angry at my disease but appreciate what I have. There is also a special blog I have been reading - it's under the links to other blogs. It's from a guy who is married to a woman with CF, and they've just had a baby and the woman is very seriously ill. That's all I have to say at the moment. Goodnight!

This is my new blog. I have had several previous ones, but I am hoping to make this one into much more than just a blog.