Thursday, January 31, 2008

Do I Have To?

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't tell him anything." - well they told me and Dr. Meyer that I was sick enough to need IVs)

What a waste of money and time. I could have spent an hour of the day at the hospital: 10 minutes for PFTs, 10 minutes for a port access and 40 minutes to sort out the IV orders. And I would've had the rest of the day to rest at home.

My mom went crazy psycho on me again - and I just don't want to talk about this at all. It's horrible to think that I don't have anyone but my father on my side. And he's only around when Mom will let him be around.

Okay, I guess I do want to discuss this a little more.

Today was honestly one of the worst days of my life. Today and that time that Mom accused me and emma of sleeping together - that was a pretty bad day - and the day we did the science project and it didn't turn out and Mom accused me of trying to hit her and then she chased me to my room and tried to break down the door and threated to go get the ax, and Dad had to tell her we don't have an ax, and then after several hours I had to apologize. That, too, was a shitty day. But today was shitty all around.

My pulmonologist - someone I am supposed to trust and have confidence in b/c he's taking care of the disease that's killing me - accused me of being crazy, and went ape shit on me for not agreeing with him and for sticking up for myself. So I lost my CF doc. At least I still have my Mom and Dad to stick by me.....

Until Mom goes ape shit on me tonight and makes me doubt that Dr. doPico is the crazy one and makes me think that maybe it is me. So I feel all by myself again and I can't stand it.

And for some reason the worst part of today was not when she was in my face yelling at me or when I started to sob while on the phone with Dr. doPico, but when I saw Mom's grocery list. I noticed it because she had crossed out several things. I looked closer, and they were the things I need - Vitamins and Kleenex. For some reason that hurt the most.

So now I will go to bed and try and forget that today ever happened.

Wednesday, January 30, 2008

The Road To Better

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 myself off the O2 and get back to normal. Thank God.

To answer a previously asked question: I don't have a specific pulse oximiter in mind, but I need to find one that works well on diabetics b/c I'm diabetic. The hospital/clinic should have prescribed one or let me borrow one while I'm figuring this O2 stuff out. I would like my own so it's mine forever because I know someday I'll run into this problem again.

I'm hopeful tonight because things are looking up. This afternoon I was sad and unhappy because I still felt so awful, but I started to cough stuff up this evening and I'm feeling much better.

Tomorrow I will go to clinic and have PFTs done just to make sure I don't have a bad lung infection - if I do I'll do more IVs at home. If not, I'll just stay home and cough stuff up and keep getting better while the Spiriva clears my system :-)

Clinic called today and my echo cardiogram (that's what it's called - I was confused the other night and wrote "cardio echo gram") was completely normal. My parents were very worried about that - I don't think the severity of an abnormal one had hit me yet. It would be very bad had the Spiriva done heart damage, but mine is fine!!! I'm glad I don't have to worry about another damaged organ!

It feels so amazing to maybe finally getting better! I hope I stay on the road to better and don't get lost again!!!

Monday, January 28, 2008

No Clue With the O2

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 because they said it was possible I had thrown a PE - pulmonary embolism. That was one of the scariest things a doctor has told me.

My CT scan was clear - no PE - which is GREAT. But the fact that they won't prescribe O2 during the day for me when I clearly need it is not great. This means I am stuck in my home because I get headaches and confused when I walk too much.

In about two weeks (hopefully sooner!) I will have two more tests... a cardio echo gram to make sure my heart is working correctly. Needing oxygen could be a sign of congestive heart failure, which is something I really need, right guys? The other thing I will do is an exercise test in the PFT lab to see how much exercise I can handle - which is currently not much. We all know how much I love to exercise, so that too will be a really fun test. I would rather have another CT scan with IV contrast, I think.

I hope with all my heart that my heart is okay (hehe, I amused myself with my own pun...). But seriously, I have so many lung problems, I don't need something to be wrong with my heart!

This is obnoxious. I have too many things to do and too many places to go to put up with this kind of bull. I just want to be better or have portable O2... I want to get on with my life!

Saturday, January 26, 2008

Today

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.

<3 Carla

Friday, January 25, 2008

Update on Me

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. I'm also on council for the social ballroom club, UWMBDA, but I can't handle the stress of the position. I honestly didn't think they would be fighting this much over the silliest things. "Do we cancel the dance, don't we cancel the dance?" I didn't know something like that could take 50 emails to resolve.

I'm already stressed because I don't know what to do to feel better. I might be depressed (which is common, especially with all I've had to deal with recently), or I might need O2 during the day - and like Tony, one of my home health nurses said today, I'm not willing to think about that because it would be admitting that I am sicker than I want to be. I know people with lung functions much lower than mine who don't need oxygen during the day. Then there is also the issue of never going anywhere if I need oxygen all the time - oxygen is annoying. It will become the bane of my existence.

My blood work showed that I'm sating correctly during the day so my doc said I don't need O2 during the day - and Tony pointed out, "when was the last time YOU listened to a doctor?" Right. I never listen to them - and in a different way then you would think. And in a different way than my mother thinks. I do my treatments. I would be dumb not to. I don't enjoy being sick - so I do my stuff. I usually don't like to listen to the docs because I know what's wrong with me and they don't. I know what I need and they don't, so I don't listen to what they have to say and I get what I need on my own.

I wish I had the pulse ox thing like I wanted when I got O2 in the first place... but the insurance wouldn't pay for it. I'm so frustrated with the insurance, my parents and my grandparents. My grandfather is just cheap. I have asked for his help to pay for the little O2 concentrator so I can travel and he is "thinking about it", which to me doesn't sound too promising. He can bail my cousins out of legal trouble, but he can't help with my health. That's frustrating.

The Happiness Vacuum is the same - doubts me and my ability to take care of myself, doubts my ability to go to Europe this summer, and fails to understand how much I need her support. She is in denial and apparently didn't get the message in the three page letter I sent her. What else can I do?

At least I am sleeping better. I don't know if the sleeping is helping, but at least I'm sleeping better.

I'll figure all of this out eventually. I just need to be more patient, but I find it very hard to be patient when I would rather just get things done and be bouncy again.

Thursday, January 24, 2008

Smiles

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.

Wednesday, January 23, 2008

My Name

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 accepting. You don't get worked up easily.
Well adjusted and incredibly happy, many people wonder what your secret to life is.

You are very intuitive and wise. You understand the world better than most people.
You also have a very active imagination. You often get carried away with your thoughts.
You are prone to a little paranoia and jealousy. You sometimes go overboard in interpreting signals.

Tuesday, January 22, 2008

Cross To Bear

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... "

Trapped and Lonely in a 2,400 sq. ft. Box

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 crochet, clean and nap, and I'm still bored.

Talking to my CF friends help because some of them understand the loneliness -but I don't think I know anyone who lives completely alone. Correct me if I'm wrong, but everyone else lives with at least one other person. That would be nice. Maybe I'd stop naming and talking to my inanimate objects if I had a roommate.

And now winter break is over and my friends are all back in town and they are all soon to be very busy with school again. This would have been my hypothetical last semester... but had I continued as an chemical engineering major, I probably would have needed a fifth year, even if I had been healthy. Had I continued after I decided to switch I would still be on my second or third semester. I was no good at being a student anymore. I understood the material, but when I'm sick I have no motivation to keep studying. Too bad I'm sick a lot of the time.

So I quit school. I had no choice and I doubt I'll ever get a degree. I'm jealous of my friends who are graduating (especially the engineers... I wanted that so badly) and get to go off and get jobs. I would have tried to find a job in Madison, Minneapolis or Chicago, but honestly I wouldn't have wanted to move away from my current doctors. Not that I like them as much as my pediatric doc, but I would be nervous that I would end up with a doctor who is WORSE if I moved. There aren't that many great doctors out there. I know. I've met a good percentage of the doctors here.

So anyways, I'm jealous of my friends who get to have careers and jobs and families and lives. I'm doing my best - working on my book, but like I discussed with my social worker the other day, I don't really want to finish it - because after I finish it, then what am I going to do?

I want to be a speaker who travels around the country promoting CF support groups for adults, parents, and teenagers. Once the study proves that support increases compliance, I believe this path may be possible for me, if I ever get a smaller O2 concentrator.

I want to make an impact on the world. If I help one CF patient feel less hopeless or inspire them to help the world, then I've done enough, but I'd love to do more.

Ideally I want to be traveling all around this country, Canada and Europe until the day I have to sign up for the transplant list. I want to promote my book and promote happiness and living life to the fullest for other CF patients.

I want CF to have major media attention. I want people to know what it is and to help. I want to comfort children with CF because I remember the first time I realized I wasn't the same as all the other kids. Originally, when I was a kid I wanted to be a pediatric pulmonologist so I could comfort the CF patients - and no one knows what a CF patient needs like another CF patient. Unfortunately I wouldn't make it through medical school, and I can't see patients because of the MSRA that grows in my lungs and sinuses.

That's another topic I'd like to address quickly - MRSA. Yes, it's the deadly "hospital bug." It grows in my lungs and my sinuses and I haven't died yet. Yes, it can be deadly if it gets into a wound and it's not treated right away or it gets into the blood stream. I wish the media would leave it alone. A little part of me dies with each story the media runs on MRSA... At the doctor the other day I ripped out an article on MRSA from People magazine because I didn't want anyone to read it.

MRSA is bad, but Cepacia is worse. Look up b. cepacia and you'll see. At least burkholderia cepacia is worse for me - you probably can't catch that one. The Wikipedia site fails to mention that many CF patients with cepacia die in the next year. It's one nasty bug.

Now I am rambling and hoping that when I check my email again it will give me something to do - something to respond to, or the best scenario, someone will want to come visit me. Maybe if someone were here with me by 2,400 sq. ft. box wouldn't be shrinking so quickly.

Monday, January 21, 2008

Oxygen

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 as low as 40% when I'm sick (less happy...). This number has dropped a lot in the past few years for me.

The third number is less important, but still used. It is FEV1/FVC - This is the ratio of FEV 1 to FVC. In healthy adults this should be approximately 75 - 80%.
My most recent one was 56 when I was healthy, and when I was sick 42. I don't really like either of those, but whatever.

So that's the basics on how they measure my lung functions. When I'm sick, and sometimes when I'm not PFTs are absolutely exhausting. I've been told there is a point (mainly before transplant) when you become too sick to even do PFTs. Great.

Recently I was put on oxygen at night. It is a long story how I convinced them that I needed it, but I did. I was having horrible headaches, not sleeping well and was confused during the day. I was so tired no matter how much I slept.

I am on one liter at night, and honestly I'm not sure what that means. Is that one liter per hour? I'm guessing so, but I have no idea. I should Wikipedia it, but I am lazy.

I'm not a big fan of oxygen - well, I am a fan when it's in the air and I am getting enough on my own. Having to use a giant concentrator that is too heavy for me to lift to be able to keep my oxygen levels where they need to be is what I'm not a fan of. I hate my concentrator. I hate him so much I refuse to give him a name.

I name everything. I have Norman the hospital blanket, Shakey the Vest, Reggie the Wedgie, and Ned Nebulizer. I like naming things. I also like to take Gladly the bear with me to the hospital. My mother made fun of me for it last time she was here. I'd like to see her sick in the hospital, all by herself without a teddy bear. It's lonely without a bear.

Anyways, I refuse to name this oxygen concentrator. He is ugly and 50lbs and means I can't travel because I can't take him with me.

The day I saw the delivery guy roll the concentrator up to my door I saw my life ending. I knew I couldn't go visit Sarah in Milwaukee or Eau Claire, or go visit my parents or grandparents or travel with the dance team. I really wanted to go to at least one dance competition, but now that I'm on oxygen at night it doesn't seem possible.

I can't go camping because of the ugly guy in the dining room (he is in the dining room because he is too ugly for my bedroom. I would rather have 40 feet of tubing leading to my bed than Ugly messing up the vibe in my room). Not that I have been camping since middle school - but I've thought about it. It was possible before, now it's not.

If my friends decided to have a sleepover, I can't go because of the ugly beast in the dining room. ...Not that we've had a sleepover since the dorms, but it was possible. Now it's not. I can't stay over anywhere but here and that pisses me off. I feel trapped and isolated that I can't get drunk and spend the night on someone's couch. Not that I ever did that before, but I could have. Now I can't.

I can't go on a road trip. Forget flights. Forget trips. Unless I get a smaller concentrator, I'm never going anywhere overnight again. Seriously? That's insane.

This is why I'm fighting really hard to get the cute little concentrator. He would get a name. Cal, Caldwell, Carl, Carter, Chavez - all possible concentrator names. Or maybe Cliff then I would have Norm and Cliff. Cliff will probably be the winner unless someone else comes up with something even more clever.

When I get everything together and am able to travel again I will say "Let's go boys!" and haul all my stuff around. I really hope that I will be able to go to Italy this summer - that this O2 stuff hasn't ruined all my plans.

You never realize how much you could have done until you can't anymore.

Sunday, January 20, 2008

Waiting for Organs

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 even flirt. That was before her double lung transplant that replaced her diseased and failing lungs with new ones. And afterward? In January she ran with the Olympic torch.

Sara, a former high school student from Hartford, was born with cystic fibrosis, a genetic disease which along with causing digestion problems, can destroy the lungs. By the time Sara reached high school her lungs had become filled with the sticky mucus caused by the cystic fibrosis, and with every breath she took she could feel the mucus rattle.

Before the transplant Sara would wake up everyday at 5am for her treatments. She inhaled antibiotics and swallowed handfuls of pills before finally turning upside down over a pile of pillows to have a parent pound on her back to help loosen the mucus in her lungs. Altogether, the treatments took up more than two hours of her time each day. Forget trying to live a normal life. No after school activities, no long outings with friends, and definitely no dates.

She said, "Sometimes I'm tired of not being able to take a full breath. I ask my parents what it's like to lead a normal life, to not have to think about each breath."

Sara was on the transplant list for two years; two years when she was so sick she had to spend at least one week each month in the hospital. Sarah spent each day in the hospital with an IV in her arm and every day consisted of at least four hours of more aggressive chest therapy.

Eventually Sara did receive new lungs, but it wasn't easy. Transplant patients have to be in good health, or as healthy as possible to receive the new organ. Even if the patient has the slightest cold the transplant cannot be performed. And it's not like they can just stick the organs in the freezer and wait until the patient is healthier; the organs must be used immediately or they go to waste.

This story had a happy ending, buy many others do not. In December of 1999 there were 73,824 people waiting for organs and two weeks later, 6,125 of those people had died while waiting. And don't think they were just anonymous patients. They were someone's parents, brothers, sisters, children.

Sara was lucky, very lucky.

Now what could I possibly have in common with a transplant recipient, a girl born with a chronic, life threatening disease? The answer? I too, was born with cystic fibrosis.

You've all heard me cough, and many of you have seen me take some of the 45 pills I take each day. Some of you may even be aware of my treatments. The antibiotics I inhale everyday and how my parents turn me upside down over a pile of pillows to loosen the mucus in my lungs.

Other people may get up here to tell you why you should become an organ donor, but I'm here to show you. I live wondering if with the next breath I take I will catch a cold that will land me in the hospital. This is something I have to face everyday for the rest of my life.

But let me ask you, am I really that different from you? The only real difference between you and me is that I know that someday I may need an organ transplant. Any of you may also need a transplant. What if you need a kidney, or your father needs a heart? Would you want to watch someone you love wait for a new organ?

That's what happened to the parents of an eight-year-old boy from Brookfield. Matthew was born with a heart defect and underwent five open-hearty surgeries by the time he was six. It wasn't enough; he needed a new heart. Matthew was on the the transplant list for six months, but died while waiting for his new heart. In the the six months he was on the list only one heart became available and it went to another boy.

Put yourself in his parents' shoes. You have to sit by and watch your son die, maybe in pain, and certainly in fear, because there are no available hearts. If some bereaved parent had taken that minute to see what a great gift their lost child could still give, Matthew could still be alive.

It's very easy to become an organ donor or to donate your children's organs. All it takes is a signature. A sticker and your signature on the back of you driver's license could save a life, or maybe even more than one.

If it's so easy to become a donor, why don't people just do it? Maybe because they don't understand the need for organs and the importance of donating, or maybe it's because of that deep down feeling of immortality. Face it. Do you really believe that you could die at any time and that your organs could be used to save others? I doubt it. Even I, although I know that I have a chronic illness, doubt that I could become very sick, and then just be gone.

But it can happen. To your best friend, my next-door neighbor, to me, or even to you. But if you had to die suddenly, wouldn't it be great to give one last gift?

The greatest gift of all - life.

Think of all the things that can be donated - lungs, heart, liver, kidneys, corneas, and skin. Think of all the lives that could be saved if each of those organs were used.

My best friend Katie got her temps in November and the first thing she did was sign her license and ask where she could get the sticker. When my friend Sarah got her license she too signed the back and stuck the donor sticker on. Because she signed the back of her drivers' license, she can save a life.

I too will be getting my license in a few months. Because of my cystic fibrosis the only organs I can donate are my corneas, but I will be signing the back of my license, in hope that if something suddenly happens to me, I will be able to help someone see again.

Signing that card makes me face the truth, and facing the truth scares me to death. I get shivers thinking that someday someone may cut open my chest, take out my lungs, and replace them with someone else's lungs. But what scares me even more is the thought that I may need that transplant and there will be no one who signed their card to help me.

So if you're hesitating to sign that card, think of Sara, and Matthew, and me. Ours are the lives that may hang in the balance, but remember that someday your life or the life of someone close to you may depend on that person sitting next to you today.

Thank you.

And now, older and wiser, I ask that you not only sign your donor card, but make sure you express your wishes to your family because they ultimately make the decision.


Also, for a true tale of what life is like waiting for a transplant, visit http://cfhusbandblogspot.com - Nathan is amazing at describing exactly what things are like for his wife Tricia, who is waiting.

Saturday, January 19, 2008

Don't Stand So

"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 no one would know where I was will still be there. They will always be there. The violent tantrums happened there. Being told I was wrong happened there. It wasn't until I left that people believed me. It wasn't until I left that I was able to help prevent it from happening to anyone else.

I'm afraid my PTSD may be coming back. I'm afraid the nightmares are getting worse. I'm afraid I may be victimized, preyed upon or otherwise hurt again. I don't know if I can handle another person using me or hurting me. There have been too many.

I liked when the dreams made sense. When I would dream I was being chased and hiding in the chem room I knew what it meant. When I would dream I was trying to get him fired I knew what it meant. Now that I'm dreaming that he's eating my pancakes and no matter what seat I move to at the table he keeps taking my pancakes, I have no idea what it means! What does that mean? Seriously. I have a major complaint to file with my sub-conscience. If I am going to have nightmares that worry me and upset me the entire next day I would like to know what they mean.

So maybe for a little while no one should be standing very close to me. At least not until I figure out what is going on with these pancakes.

Thursday, January 17, 2008

Intro to Me

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!
<3 Carla

Learning to Live, Day 1

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.

<3 Carla

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