Monday, September 29, 2008

Tears, Fears and Rage

So I finished writing this, I think. Here you go:

The other night I was at a party, and as everyone was sitting around the campfire chatting the topic turned to pain and IVs somehow. I really don't think I had anything to do with this topic change, surprisingly. One of my friends commented on how much it hurts when an IV is pulled from your hand. I assured them that it's much more painful when the PICC line running from your elbow to your heart is pulled out. All 54cm of it.

Another friend of mine commented on how much her back hurt - and my first instinct was to throw her out of her chair for even mentioning back pain. The second instinct? Show her what real pain is. But I would have no idea how to inflict this much pain on someone. I'd have to call my old buddy Himmler.

My back pain is so bad that I can barely stand. Sitting for long periods of time hurts. So mostly, I lay around. This morning it hurt so much I couldn't get out of bed. I literally couldn't move. But did I say anything to put her in her place? No. Because I'd rather not talk about how much pain I am in. I'd rather not let anyone know how horribly things are going, and how it looks like I have to sit around in pain for months waiting for something to happen. Or, rather, waiting for nothing to happen. That's my fear. I will wait around for months in all sorts of pain, and then they still won't know what's wrong with me.

I don't know if I could talk about my pain when I'm with a group of friends. I'm afraid I would start to cry - and I'm not the kid who cries because things are hard. Yes, when I have the energy I will complain about it in my blog, but then I am done. I almost started to cry while talking to my therapist today - which is strange. I have seen the same therapist since April 2006 - and even when I was talking about how I was hurting myself I never cried. Talking about the nightmares never made me cry. Talking about my mother never made me cry (because Dr. Martin is the best...), but talking about waiting around in pain made me start to cry.

And then I came home and had a complete breakdown. I actually had the hospital where my dad works page him so I could talk to him. I pretty much refuse to talk to my mom because she makes my world spin in the wrong direction. I can't move forward when she's telling me what a horrible person I am.

I am frustrated.

I don't know if I can even explain my frustration, but I will try. I am strong. I can get through anything - that's who I am. And this pain is testing that and I don't know what to do. I am the person who goes on despite the pain or the inability to breathe. I am the one who dances despite CF - dances to fight CF, but now my dancing is gone and I don't know what to do about it. I want my dancing back. I want my life back. I want what little I had back.

I've been feeling so isolated. I used to talk to Mom because she's the person who has been there through whatever I have been through, so she pretty much understands, kind of. But now I can't talk to her because I make her worry and she yells at me and it's just bad. So I am talking to my dad, but no one knows what to do - how to help me.

I want some help - but I don't know who to ask, or what to ask them to do. I've got this sort of apathetic attitude towards everything. But tonight I unloaded the dishwasher and I showered. And I didn't die. But I am out of Kleenex boxes, which might send me into another nervous breakdown. I know I'm having an anxiety attack at the thought of having to go to the store.

Honestly, I want my dad to come stay with me. Unfortunately he has a job that he sort of really needs to go to. I feel like my dad is the one who gets me. I can tell him anything. He's a doctor and he can fix me. He's always helped fix me before - and now that we're pretty sure we know what is wrong, I'm so upset that the only thing I can do is sit and wait.

I'm not the "sit and wait" kind of person. When I get out of surgery I want to get up and walking as soon as possible, because that will get my lungs working again and I will be better as soon as possible. I call the doctor as soon as I think my lungs are going south so that I can get IVs and get back to my life. I make the doctors DO SOMETHING when something is wrong. I have the urge to call all my docs and just yell because no one can figure out a fast solution to this. I WANT MY LIFE BACK.

I refuse to accept that my life is going to become me giving in to the pain. I hate taking the pain killers - I hate feeling like a zombie. But I hate that there is nothing to FIX me. I'm thinking I'm so bad I may as well have the exploratory surgery. It can't be any worse than waiting around, can it?

Well and then there's this issue. Read it if you want... the comment I made is there. I made it in February of this year when I was just getting off the oxygen. It's a huge issue for me, and I don't know how to deal with it. I really just don't know what to do about it.

I guess there's nothing I CAN do about it. But I'm unbelievably thankful for the support I do have. I love my Chris and Kyra, my Sarah, my Rachel, my Darin (when I make him care about me and pay attention), and my dad. They are my people. And I'm glad I don't have just one person - I have people. And yes, that's a loose Grey's reference.

Lastly, I'd just like to say that I'm scared. I'm going to admit it. I'm not usually scared about anything because I know that I will do everything I can do get better, and I will get better. But I don't know now. And I'm so afraid that I won't get better. That I'm going to be stuck like this forever. And being stuck when you really want to be able to do things is possibly the worst feeling ever.

Here it comes...

This afternoon I think I might spit out all the crap I'm feeling. I haven't been blogging because I don't really want to talk about what has been going on. Because if I talk about it then that makes it real and I really don't want any of this to be real.

I have fallen off my wagon of goodliness, and I don't know how to get back on. I'm running behind it trying to catch up and every time I reach for it to jump on, I fall on my face. I'm at the point where I need to decide whether to just lay face first in the dirt, or if I'm going to get up and try to get on my wagon of goodliness again.

...I may censor what I have to say about some things, however, because I don't want to piss off most the people I know.

...And yes, Kyra, I would love to have a guest rant from you :-) I think this blog needs a little Palin-Bashing.

Wait and see! One very pissed off rant about the world coming up!

Wednesday, September 24, 2008

Evening Thinklings

*I'm too sick to care.

*My throat hurts.

*I am bored. I'm tired. I want to feel better.

*I can't watch Dancing with the Stars without crying now. I want to go back to dancing so badly.

*I'm done now.

Tuesday, September 23, 2008

Watch What's Coming

A few years ago there was a terrible winter storm at my grandparents' farm in IL. Beautiful, but awful. Click on these top two - it's WORTH it!

Welcome to Nowhere, USA.

A tree nearly hit the house.

Today in my Inbox

I got this:

"Carrots, Eggs, & Coffee!

A carrot, an egg, and a cup of coffee...You will never look at a cup of coffee the same way again.

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up, She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she asked, ' Tell me what you see.'

'Carrots, eggs, and coffee,' she replied.

Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg.

Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, 'What does it mean, mother?'

Her mother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

'Which are you?' she asked her daughter. 'When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg or a coffee bean?

May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.

The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes a long their way. The brightest future will always be based on a forgotten past; you can't go forward in life until you let go of your past failures and heartaches. When you were born, you were crying and everyone around you was smiling. Live your life so at the end, you're the one who is smiling and everyone around you is crying.

May we all be COFFEE!"

Somehow, I still hope people aren't too sad when I'm dying. That's the hardest part about being sick - knowing that the people you love will be so sad if you die. I don't want anyone to feel pain because of me. But I liked this thing, and despite not liking coffee - I hope I'm most like the coffee.

Someone once said, "A woman is like a teabag- you never know how strong she is until she's in hot water." This forward thing reminded me of that.

Monday, September 22, 2008


The very first plant I took care of while living on my own. I'm only on plant #2, because I'm terrible at it. But this one lasted a couple years.

Sunday, September 21, 2008

Evening Thinklings

*My dad is a wonderful person. He gets me and knows how to help and why can't he live closer to me??? And why can't my mother live farther away???

*I'm thinking of a family friend who is in critical condition at a hospital in Austin, TX. Her mother is one of the best female role models I had growing up - especially in high school. If you're the praying type, please pray for this family. They are really good people, and I've known them since I was born.

*I have a friend who is the coolest chick I know. She oozes coolness, and I'm kinda jealous. Not kinda jealous - really jealous. I was going to write a long essay on this - about how no matter what I do, I just don't FEEL cool enough. I think I picked this complex up in elementary school.

*I'm tired. And yes, I'm physically tired, but that's pretty normal. But right now, I'm EXHAUSTED. And it won't go away. I was so happy post-surgery when I was getting shit done and dancing and being social. And now all that kind of collapsed into me on the couch or in bed watching TV and not doing much else - except sleeping horrible amounts.

*I wish I had someone here with me. I hate being alone when I'm sick.

*This was not what I signed up for - I can handle my CF and things related. I've had 20 years to adjust to that. I can't handle this pelvic pain crap. It's so limiting. JESUS. I thought CF could be limiting - but nothing like this. I bounce back so quickly from my CF stuff - I just know how to do it. I don't know what to do, and the doctors don't know what to do. All I can do is sit and wait. And that pisses me off.

*And the world pisses me off. I'm just way too frustrated to say anything good about anything.

Friday, September 19, 2008

Ding Dong The Evil Bitch Has Left

Yes, my mother left this morning. Do I feel bad about openly calling her the "Evil Bitch" in my public blog (that my father reads)? A little. Not bad enough to take it down.

I don't know what her problem is, but I think I need to find ways to keep her away from me when I'm sick. It's convenient for her to come down because she doesn't work, and heck, she's my mom, but as soon as I'm feeling a little better we fight. No, we don't fight so much as she yells at me about everything and then there's a point when I can't take it anymore so I yell mean thing back - like yesterday I told her that her life consists of sitting on the couch with the dog. Oops. Then she informed me of all the chores she does. Chores aren't a life, Mom. Having friends or some activity you really love (besides the Home and Garden Network on Television) is a life.

I don't want my life to stop just because I have to be on pain pills because without them the pain is so bad tears run down my face. I don't know how to describe how horrible the pain is without the pain killers. I just don't. But I have lost my dancing - and hopefully it is temporary. I refuse to lose the other thing that keeps me going - my friends. I refuse to be stuck in my house all the time because I have to be on pain killers. I thought she was here to help me live my life despite the pain killers, but she sees taking me anywhere but the doctor as silly. She thinks that if I need to be on pain killers, I need to be bed ridden, and that's just not how I roll.

I'm still trying to think of a way to figure out how to dance... it's not likely that I'll find one, but I'm still trying.

Photo, Photo, Photo

Me being nerdy - I love the periodic table!

Last winter... snow came before the leaves could go away. :-(

Thursday, September 18, 2008

Tonight's Thinklings

*What's so wrong with the "New Facebook"? I find it just as annoying as the old one - although I spend less time on applications with this format - so I probably waste less time overall.

*Shit, I forgot. That's the drugs that just kicked in. Goodnight.


My mother is here. End of the screaming story.

Wednesday, September 17, 2008


That's all. I'm frustrated. It sucks. At least the pain pills work, but it means my mother has to be with me all the time because I can't drive.

Tomorrow is the FIFTH day in a row that I have to go to the doctor.

I'm thinking about somethings too much and I hate that. Good thing the pain killers leave me with little ability to think. Yay.

Tuesday, September 16, 2008

More Ranting and Hopefully Some Bright Sides

I am right now calling the ob/gyn clinic because I am beside myself and don't know what to do.

This is ridiculous. Yesterday they told me nothing helpful and sent me home to lay on the couch in terrible pain until THURSDAY?

I can't do this. I'm so desperate to have someone help me. I'm in so much pain. I hate being alone when something is wrong. I don't know what to do. My biggest fear is being alone, in pain or sick, and no doctor will help me.

And they won't help me.

I have a fever - I never run a fever. There is something terribly wrong with me and no one will help me.

I just want to SCREAM.

Monday, September 15, 2008

Make it Stop

This is me complaining because I won't complain anywhere but here.

I don't want to lay on the couch in pain anymore.
I am tired of rotting my brain with stupid television (yes, I've already watched everything worth watching... twice. Honestly, I've seen nearly every episode of Law and Order. That is how much television I watch).
When I read my book I fall asleep.
I'm tired of sleeping all day, eating dinner, maybe doing something in the evening - but usually waiting by myself in front of the television until it is 9pm so I can go to bed.
I want to dance again. Well, I'm still dancing - I just dance until I nearly pass out from pain. GOOD STRATEGY, Carla. Well, fuck you, voice of reason in my head.
I want to sort the rest of my stuff so my house is organized. FUCK I'm so close - and I can't finish it.
I want this to go away. It's not something that was in my CF contract. I got it out and looked. Pelvis pain is NOT in there. Dying from lung disease I can handle - not being able to do anything because my pelvis hurts pisses me off.

I'm now going to curl up and cry now. I hate this so much. I hate that I'm alone and doing this on my own so much. Although a GIANT thank you to Chris and Kyra who check up on me :-) And Michael and Amelia too. Thanks to Chris for getting me groceries - I just can't walk that much right now.

I'm done. I will go watch something lame on the television. I'll let you know how it goes - oh wait, it was lame.

Fall is Coming!

Reasons Not to Post Late at Night

I called it a "scapula" - it's a "speculum." Scapula is your shoulder blade. Although THAT would make for an interesting pelvic exam.

Thanks, Dad.

This Week In Doctors, Take 2

I called my OB/GYN at 8 this morning to see if I could get the elusive "emergency spot." I couldn't. "Today is the Doctor's first day back, and she is unbelievably busy." I'm in an unbelievable amount of pain. Who trumps who.

She trumps me. I got to see the nurse practitioner. She told me that my cervix could look normal. It just happens to be sensitive and so I bleed a lot. Apparently, she touched it and it started to ooze blood. Yes, ooze blood were her words. So basically she told me I'm fine. I said, "What about this unGodly pain I'm in?" Which made her stop and think.

Poke poke poke. Scream scream scream. She says, Well you could have cysts on your ovaries - they can be painful. Or you could have endometriosis. The doctor would need to do surgery to determine that.

So my options are surgery or live with the pain? What the fuck? Are there or aren't there endometrial cells on my cervix? I'm guessing bumping those would cause bleeding too, Genius.
I'm not allowed to talk to anyone else in the medical profession today for fear I may lash out and kill them. I'm going to go read a book to prevent me from killing anyone over this mess of doctors appointments that will tell me nothing and give me no options. Thank you. Have a nice day.

Sunday, September 14, 2008

In My Past Life I was a Total Bitch

This is me with a PICC - It was spring 2007 sometime because that was the last time I had a PICC. I now have my port, which is so much better because after a PICC you get lovely holes like this:

And then they get infected and you worry your arm is going to fall off or you are going to die from sepsis. Makes a quick trip through the ER though. If you look closely, you can see where the biopatch was (allergic to that now... you can see the edges were irritated), and you can see the mess the tegederm makes of my skin. And after today, these are my FOND memories.

I am convinced that in my past life I was a TOTAL bitch, because karma doesn't bite this hard unless it's for a reason. My favorite part of today was that the SPECULUM BIT ME. That's right. I got bit by a speculum. And it has left a nice painful tear in my skin. Here's to hoping it heals quickly.

In my last post I mentioned that I was going to urgent care to rule out a bladder/kidney infection. Well, they ruled that IN, and for fun decided to do a pelvic exam. Oh yeah, this is going to be fun. Stop reading now if you're squeamish. Well, if you were squeamish those photos should have stopped you anyways, so I'm not too worried.

They mentioned "pelvic exam" and I went, "What, TODAY?" Yes, today. I had to take off my bottoms and hop up on the exam table so I could cover myself with a cold sheet. Then a doctor I had never met was sent in to look up my "va-jay-jay" as Oprah says. And not just look - "Examine."

I've never had any problems with my annual pelvic exam - actually I've usually had more than one a year because we were trying to figure out the cause of the mysterious bleeding. I've never had any problems with the exams - but then, I've never had any real complaints besides the excessive never-ending bleeding. I've even had an internal ultrasound. That's right a giant dildo-shaped ultrasound thingy had to be inside me. And they don't warm those things. That's when they found some sort of "mass" in my uterus. It went away.

So back to today. First the doctor determined that I have "broad tenderness." If that's what doctors call Tons of MotherFucking Pain in the Pelvic Area, sure, okay, it's "broad tenderness." Now it was time for the internal exam. She decided to take a sample of the inner tissue to make sure it's not infected and I was tested for chlamydia and gonorrhea. Those last two are going to be negative.

The speculum was cold. I had just been told I probably have a bladder infection. The scapula hurt - it has never hurt before - and then she had to ADJUST it. Oh. My. God. I thought I was in pain BEFORE that exam. I nearly passed out afterward. Apparently she moved the scapula to see the entire cervix. There is a large mass on my cervix. After she touched it with her gloved hand - which nearly made me scream in pain - she told me "It's probably not cancer because it's not hard."

Good. A large mass on my cervix confirming I have endometriosis - assuming that it ISN'T cancer. Right.

I don't know if I mentioned it here, but I was assuming this pain was endometriosis - it's a lot of random pain and random bleeding, and it seemed to be the only explanation. Sometimes I hate it when I'm right. Especially when me being right has the most complicated solution.

Thank you, TLC, for helping me diagnose myself. I was watching one of those medical mystery shows, and I saw lots of my problems in this woman who ended up having endometriosis, so I read more about it and figured it's what I have. And, shit I was right.

Hopefully I will get an appointment tomorrow and learn what my treatment options are. I really don't want the word "surgery" to come up. Damn.

Well, all I can do is wait until tomorrow. And then take things as they come. But at least, if I have to have a mass, it's a squishy mass.

Saturday, September 13, 2008

How I Feel

This is alcohol on fire. Yay.

This is how I feel. No, maybe I feel worse than this. At any rate, if they told me tomorrow I have to go into the hospital, I wouldn't fight them.

I was able to go to UWMBDA tonight. I was able to do my council duties that I have neglected the past week. Now I just have to enter all the members into a database - which should be easy.

I danced a little, but not too much since I am running a fever. And the pain. OW the pain.

Tomorrow I have to go to urgent care to make sure I don't have a bladder/kidney infection. If they tell me I'm not dying, I'll be at dance practice. If they tell me I'm dying, I'll probably still be at dance practice. No time like the present!

Friday, September 12, 2008

Because I Feel Like It

This one time, I broke open a coconut.

Drowning in a River of Tears

Because you never know when you'll need one.

Soooo today. I laid on the couch, got yelled at by my mother, laid on the couch, got yelled at by my mother, cried my eyes out, talked to my dad, and was rescued by a wonderful friend. We went to dinner and had a great time. Then I took her and a couple other friends to a movie I had been wanting to see. Unfortunately, I didn't know how much graphic violence was in the movie - my poor friend hated the movie. I hope she had an okay time anyways.

I haven't had chest PT or a vest or a saline today. I am bad. Maybe I am purposely hurting myself just a little to get back at my mother who basically yelled at me because I exist.

I'm still in loads of pain - but doing stuff with friends helps me forget how much pain I'm in. My appointment with the gyno is next Thursday. That's a long time for me to wait like this. Boo.

I don't know what this weekend is going to be like. I can't decide if dancing is a good or bad idea.

I'm Done: A Rant By Me

Yes, it's another photo of a flower.

Confession #1: I haven't done my saline in a couple days, but I am doing it right now. This blog keeps me honest with my goals because I can't lie to myself. I have kept up with all the other things - including rinsing my nose semi-regularly, writing in my journal, pouring meds, and brushing my teeth. I need to work on checking my blood sugar more often. I'm good at insulin, bad at checking my sugar.

Confession #2: My poor jade plant - it's leaves are falling off. I believe I haven't watered it enough. So sad. I hope it can not die on me. It was expensive. And I love Jade.

Confession #3: I'm done. This is the end. I'm going to figure things out and then I will be all better. This is my rant.

I can handle the CF, the sinus problems, the diabetes, the PTSD, the restless legs syndrome, the depression, the anxiety, and whatever else I've forgotten to list. Those I'm cool with. I can't handle the constant pain. The fibromyalgia. If that is what I really have (and I'm begining to doubt it, unless I have a severe case). I am in so much pain all the time. I try not to take Tylenol because I already have liver damage, and I don't want to do anymore damage.

I need to find something that will help my fibromyalgia. I don't want to live like this anymore. I lay on the couch hoping the pain will go away and I will feel well enough to organize the rest of my stuff. But I don't feel better. I lay there until I have to get my ass up and get ready to go somewhere. I sleep away the pain.

The other issue is the BLEEDING. The God forsaken never-ending BLEEDING. My guess is I have endometriosis. My grandmother had it - and I seem to have gotten every bad gene my family had to offer - CF, diabetes, ADD, gallstones, kidney stones, etc.

I just need to know what's wrong and how to make it go away. I don't care if it goes away - I just want it to be better controlled. If I can't get it under control, I might have to stop dancing and I really don't want to do that. I'd rather die.

I'm thinking full hysterectomy to stop the bleeding. I just want it to STOP. I've tried about 4 or 5 different birth control pills - I'm not even supposed to have a period because the bleeding and cramping were so bad I couldn't get out of bed for three days a month. And then we figured out that I was bleeding because of the heparin I get at the hospital - but I didn't get any last time. I refused it so I wouldn't bleed so much. We're approaching 3 weeks since my antibiotics were done. I shouldn't STILL be bleeding. THIS IS SO DUMB.

I'm ready. Take all that shit out.

Tuesday, September 9, 2008

A Combination of Things

Look at cute photos of my dog.

And now I will talk about today.

Today was my first intermediate dance class with the new dance team - and it's pretty much my favorite thing ever. It was a three hour class, and while I only made it through 2.5 hours and discovered I have no core strength, it was WONDERFUL. We covered the ENTIRE basics of waltz in ONE HOUR - not one semester - ONE HOUR. This is definitely my speed. I didn't feel out of place or that I'll have to work hard to keep up - it's just so unbelievably beyond perfect for me.

The rest of the day I spent sleeping. I think dancing last night wore me out... and I have plans tomorrow evening which should be low-key, and Thursday's plans are low-key, and Friday is optional and weather related. Saturday is less optional and dancing and Sunday is lots of dancing. And then I will start all over on Monday.

Either this team will keep my lungs in shape and keep me healthy, or it will kill me :-) We'll find out soon.

It's off to bed super early for me, because I'm so tired I can barely see straight. Love that feeling though!!!

Kyra posted today about how things can change so quickly - and while their life changes have been more major than my recent ones - for me, mainly switching dance teams - I think there have been blessings for all of us in these changes. Hard times are often a blessing in disguise.

Lastly, I'd like to say that I'm having a difficult time with the death of my friend Laura. She had CF and was 4 days younger than me. The difficult part for me is to figure out why I'm still here. Why am I still able to dance and volunteer and lead my life the way I want to, and she died so suddenly?

It again forces me to realize how terribly short my life could be - which is why I try to show everyone just how much I love them.

So, in honor of Laura's short life, I'm going to keep living mine to the fullest. And in honor of Laura, this week I'm going to tell people how much they mean to me. Maybe you didn't know Laura, but I'm sure you know someone who died too soon. Remember life is short. Spend time with people who make you happy and let them know you love them.

Good night.

This Is Me. This Is Me Freaking Out.

No go funeral.
Why not me?
No other words.
So Busy.
Brain Died.
And Allergic to parents and their house.

Yep. That's basically what I wanted to say... minus a few sentences.

Monday, September 8, 2008

End of an Era

The clock from the pediatric pulmonary clinic. They had one in each room. I'm pretty sure this was my last time in pediatric clinic. Dr. Green, my pediatric pulmonologist had been my doctor for 17 years - and they wonder why I have troubles dealing with the adult docs. It's because it's not what I'm used to.

Sunday, September 7, 2008

A Photo A Day

This photo was taken in Nurnberg, Germany. It's how I feel now. I don't know what to do about this week. It's going to be crazy hectic, and I won't get everything I want to done. I guess all I can do is jump in and try to swim.

The couch I made! Kyra and I did a WONDERFUL job - this thing is gorgeous and comfortable! It makes me smile. And this week, hopefully I'll be able to get over to Chris and Kyra's to help Kyra hang artwork :-)

Black and white makes dancing look even better. These are the two best dancers I know, and I am privileged to call them my friends.

The Weekend and The Lack of Blogging

I got sick. I drove up to my parents' place and immediately very nearly keeled over. I was napping and sleeping in the front bedroom which has a TemperPedic mattress - and oops, I'm allergic to it. It very nearly killed me, and I was pissed.

I'm feeling better now, and also have lots to catch up on and lots to do to get ready for this week.

A friend of mine who has CF passed this weekend, so I have a funeral to go to this week. It's going to be a busy and exhausting week.

I'm not ready to comment on anything yet.

Thursday, September 4, 2008

My Day

I had a meeting at the CF Foundation, and they offered me a great volunteer position. More about that later.

Went to UWMBDA kick off (the social ballroom club on campus) - and like always, had a great time! Except for one thing - that part where I nearly had a nervous breakdown and then was jumping up and down and screaming, but more about that later.

Quote of the evening, "Nothing goes better with sleaze than sleaze." Said by a pretty creepy guy himself. Oh the joys of being a good person.

I'm exhausted and plan on writing something worthwhile tomorrow at my parents' place. So The END.

P.S. UWMBDA owes Sam and me a BIG thank you for protecting the young females that were there tonight. You're welcome. It's hard being a good person.

P.P.S. Thank you to all my friends who were there tonight. Thank you to everyone who said I looked good health-wise, because this is the best I've felt in years. I felt this energetic when I first came to college - but I was much sicker. I'm doing really well, and I love that other people can see that too. I love feeling like this.

Today You Get Two

This is my dog, Snowball. He's actually my parents' dog, but I was ten when we got him, so he's partly mine too. He is possibly the funniest and smartest dog ever. It's sad that he's getting old, but he still loves us as much as ever.

I took this photo in Rotenburg, Germany. I love taking photos of flowers.

Wednesday, September 3, 2008

I Made a Couch!

No, seriously, I made a couch. Photos and explanation to come on Friday - maybe Saturday.

Carnival di Venice

These masks I bought in Venice. I fell in love with all the Carnival masks and knew I had to have a big one to hang over my fireplace for the redesign of my place. This was the entire inspiration for my room - it gave me a color palate - red being my accent color.

The large frame came from my parents basement, the small frames from St. Vinnie's. I colored the cloth on the large frame red to match better, and hung them. My original plan was to hang other photos from our trip around the masks, but that was before they were framed. Now I think that would be too busy.

And just as I was typing this I got the inspiration to frame photos and hang them between the red dvd holders that are behind the TV...

(Remember to click on the photo if you want to see it larger)

Tuesday, September 2, 2008

The CF Median Survival Age

According to the CF Foundation, the Median Survival Age for a person with cystic fibrosis is 37. I would like to point out how skewed this number is and how it in no way applies to me. This is not to be cynical, rather to show why I feel so lucky most of the time. I feel lucky because I have no idea why I'm still alive and still doing pretty good.

The Median Survival Age is just that - a median. In case you don't remember your math, the median is a middle number - not an average. The middle number when referring to survival age means 50% die BEFORE 37 and 50% die AFTER 37. So there's that flaw with using the Median. It means there's a 50/50 chance of surviving past 37 - sort of. It's supposed to give parents a number. If your child is born today they have a 50/50 chance of surviving to 37. I don't know what it means for me.

You need to take into account who is grouped into this statistic. The CF Foundation takes ALL CF patients in this number - the people who have different gene mutations (including less severe CF cases) and the people who are diagnoses later in life. I know a woman who was diagnoses at 16. I know a man diagnoses at 30, and I know a woman diagnosed at 60. I'm pretty sure there's a 100% chance that woman diagnosed at 60 is going to live past 37. I'm just saying.

I really want to know the statistics for the Double DeltaF508 people.... I'm pretty sure the situation is much more grim. These are the numbers we need to be seeing. We need to know that progress is being made - but remember that more and more older people are being diagnosed every year, skewing the CF Foundation's data in their favor. It makes them look like they are in a way "beating" this disease. It makes it look like there is hope for every child - but there isn't. Not just from that one number. That's why I fight so hard to raise money and volunteer and change things at the hospital. I want there to be a time when you can GUARANTEE that CF will not kill a child.

I would prefer a cure to skewed statistics. I would even settle for better patient support from the CF Foundation. I recently looked at their website and they finally have suggested things I have been screaming we should be doing for years... Do you think they would just hand me the foundation long enough for me to make things the way they should be?

So that's my rant on The CF Median Survival Age. My biggest problem is it doesn't give me an age. I don't know how long my lungs are going to hang on. C'mon. Give me a number. I can handle it. I want to know.

No, Really, I'm Fine :-)

I'm doing pretty good. The dishes need doing, but maybe tomorrow I'll find the energy for that. Today I didn't have it.

Today I rested and watched Jon and Kate Plus Eight. I cried during the one where they revisit the NICU. I'm a sucker for little kids. I also watched about eight million episodes of Law & Order.

I'm doing my saline right now :-) Yay for me! I'm still on the Wagon! I think today is ONE WEEK. Woah. I've kept a goal for more than a week.

Monday, September 1, 2008

Maybe It's Barely

Some may say that I'm barely making it - but I say I'm doing a pretty good job.

Today I'd like to discuss CF. I was reading an article and came upon this sentence:

"It's also extraordinarily deadly. While modern medical advances have allowed many patients to live into their 20s and 30s, about 60% of kids who have it don't live to see their 18th birthday."

I am too exhausted to get into this now, but tomorrow I plan on revisiting the topic:

The real truth behind the CF Foundation's "Median Survival Age"

And maybe I'll talk about my Inconsiderate Brother... Well, he was inconsiderate today.

Holdin' On

So I've been taking care of myself. Good for me :-). I'm also tackling the crazy organization problems in my house - great for me! It's soon going to be organized and pristine. Weee.

My problem now is I'm obsessed with things that have gone wrong - mainly relationships. I can't stop thinking about them. I can't stop thinking about how much it hurt. Solutions to this problem would be wonderful.

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