The Wind by The Fray

If you click on the title of this post you will be able to listen to the song.

I've been listening to The Fray for a couple of years now. They're music is very easy for me to relate to and I like that. If I can't make some kind of a connection to a song or artist the I usually won't like it, or I get sick of it quickly. I just saw them live last week and I have to say it was probably the best concert I've ever been too. Seeing them perform you can tell they are very passionate about their music. They interacted with the crowd too, which I love to see. It tells me that they appreciate their fans.

I've find myself going back to this song since the concert. Here are the lyrics:

The Wind from The Fray

Oh my God, think I’m lost at sea

The silent waves are my company

And I lost the land between the sky it seems

And wondering, “Will the wind ever come free?”

Yeah

Cause I don’t know, I don’t know where I am

Can yu tell me, will I break or will I bend

Will the wind ever come again

Ooh, ooh

I feel the sun coming out, rising from the east

And I see the empire, falling to her knees

And I lost the land between her and me

My troubles are gone if the wind ever comes free

Yeah

Cause I don’t know, I don’t know where I am

Can you tell me, will I break or will I bend

Will the wind ever come

You left me on the shoreline

You will stand and bare

But you, I’ll find you waiting

You were waiting for me, waiting for me

Tried to kiss the emptiness

Lost the line between sky and sea

I feel the sun coming up, coming up, coming up, coming up

But I don’t know, I don’t know where I am

I will break or I will bend

Will the wind ever come again?

This reminds me of the times in my life when I've felt lost. There haven't been many of them and its always involved the loss of someone I loved. Not always a loss because of death, but those were the worst times. I don't talk about it much but my first love died and a part of me went with him. He will always have a place in my heart and I still miss him.

After something like that happens you really do feel lost. I would find myself walking through a store and I'd go from one end to the other but not remembering anything in between. For a long time I literally didn't know what to do. I wondered if anything would ever be able to get me out. And I wondered if I would ever feel that way about another person.

Eventually I did find my way back and learned that love is not always a once in a lifetime thing. I'll always carry around the pain of that loss, and of all the others, but I am better for having known those people and sharing my life with theirs. I wouldn't trade the pain of losing them if it meant that I never knew them.

I don't know what happens we die, but I hope that whatever it is I get to see Warren, Courtney, Paul, Eva, Jenn, Ginger, Shawn, Sandy, Gess, Mel, Tom, Ted, my granny, and grandpa again.

Sorry if this post is depressing. Its not meant to be. I'm feeling reflective right now.

R rated fundraiser anyone?

So, I may have mentioned it here before, but there has been this idea for a CF fundraiser banging around in my head for years. I want to see if there would be enough interest in it to make it worth pursuing. For the record I totally advocate going after what you want eleventy million percent!

Here's my idea! Everyone is familiar with the firemen calendars right? You have a bunch of incredibly sexy, half naked firemen doing what they do in the pics and then they sell the thing to raise money for burn victims. HOT! My idea would be something similar, but for CF. It would be semi-naked CF women doing what we do (treatments, IV meds, etc and so on) and it would be sold to raise money for CF research and/or medication/financial assistance programs for CFers.

Some ideas I had for photos would be someone tied up with oxygen tubing, someone sitting on the compressor for their vest suggestively, ports being accessed while wearing a corsette or something. You get the idea! I'm even willing to do all the shots myself, which would probably be easier than trying to find a minimum of 12 CF women will do this. The models would likely be all over the country (world even!) and that could turn into a big hassle.

I would need a photographer willing to donate their time (I already have one in mind that I could ask). The big thing I would need is a printing company willing to donate the production of the calendars or monetary donations to pay for it. I'm on disability and it doesn't exactly pay well so I couldn't do this out of my own pocket.

So what I want to know from you all out there in internet land is A: would you possibly be willing to donate to the making of such a thing, and B: would you buy it once it was done?

There are several reason why I've wanted to do this. First, fundraising is awesome, yo! Second; I like the juxtaposition of the whole thing. I think I can pull off sexy + clinical and make it work. Third: CF fundraising focuses very heavily on kids. Which is fine, whatever brings in the cash. The thing is that people still tend to forget that this is not just a kid's disease anymore! Adults with CF are confronted with different things and one of those is sex and sexuality. Do you know how difficult it is to get in the mood for some sexy times when there is a needle covered by a giant band aid in your tit!? I do! So I hope that something like this would bring a little more attention to some of the things that adult CFers have to deal with.

So, leave some comments and tell me what you think. Yes? No? Advice? Constructive critisism? I welcome it all. And please, pass the link to my little bloggy along so others can weigh in.

CF Food!

Take everything you ever learned about proper caloric intake, portion control, and limiting fats, do a 180 and that's a CF diet. Eat a lot, eat often, eat butter, cream, milk, and anything else fattening.

My mom used to make this stuff for me and my brother. Its perfect CFer food. It has lots of calories, tastes great even when you're sick and its easy to make.

What you'll need:
A large container of cottage cheese
A tub of Cool Whip
Mini marshmellows
A can of pineapple (I like tidbits but you can use anything except rings for this)
A packet of your favorite flavor of Jello

Your weapons:
A large bowl with a lid
A big spoon for stirring

Let your Cool Whip thaw out so its not a solid lump. Drain the juice off of your pineapple. Dump all of your cottage cheese, cool whip, and pineapple in your bowl. Throw in some marshmellows, whatever will fit. Stir that shit up! When its all evenly mixed smooth out the top. Cut just the corner off of your packet of Jello. Sprinkle it over the top of your slop. You won't need anywhere near the whole packet. You can save it for your next batch if you want to. Eat up!

This makes quite a lot of stuff, so you can halve it if you want to. I don't, it keeps just fine in the fridge for a couple of days so I can finish it off before it goes south.

WAHOOOO!

I had a CF clinic appointment on Monday. It was great! I was actually nervous about being sent home on IVs but I got great news instead! My PFTs were up to 55% from 46% in September! That's my pre-MAC baseline!! *happy dance* Next week I'll have another CT just to confirm that things still look good but at this point there's no reason to think otherwise.

I always do at least 3 tests at clinic and they keep the best one. My first one was 52%. I looked at the computer screen and said "52!? REALLY??" I made the resperatory therapist go back and check my September numbers. Then my next two tests were both 55%. I almost fell off of my chair. It looks like a year and a half of antibiotics has paid off.

My weight is good. I'm eating enough. I should get the results on my blood work next week but that hasn't really changed in years. In the summer I'll get a dexascan to check on my bone density but that hasn't changed in years either. So everything is looking great! This was the best clinic day I've had in a couple of years!

Seizure dos and don'ts!

Do you know what to do if you witness someone having a seizure? Well here are some tips that I've learned since my epilepsy diagnosis. Keep in mind that I am by no means a specialist nor do I play one on the internet. This is information I have been given by my doctors and from The Cleveland Clinic's Guide to Epilepsy.

Seizures are pretty common. Chances are that you will witness one in your lifetime. You should know what to do if that happens!

DO!

• Try to stay calm!
  
• Put something soft under the person's head to cushion in. A pillow is ideal but in a pinch you can use a jacket, blanket, or something similar.
• Move anything near by that the person could injure themselves on.
• If you can, roll the person onto their side in case the vomit.
• If this is a first seizure for the person or you don't know call 911.
• If this is not a first seizure you may not need to call 911 unless it lasts more than 5 minutes, the person stops breathing, or they are injured during the seizure.

DON'T

• Never try to restrain the person! You could accidentally injure them or yourself.
• Never try to put something in their mouth so they won't bite or swallow their tongue. You're more likely to get bitten than prevent an injury to the person seizing.
  
• Don't leave the person alone. After they come around from the seizure they might seem totally aware but they could still be post ictal. This is a period of time after a seizure but before a person is completely aware. My post ictal period lasts for the entire day after a seizure! I act normally but will have little to no memory of the day later.
  

There are many different types of seizures. They can range from someone just staring off into space and being unresponsive for a few minutes to the full blown tonic clonic (formerly known as grand mal) seizure that you typically see on TV shows and in movies. If you have a body part that just won't stop moving on its own, it could be a seizure and you need to get looked at.

I hope that this information is useful if you ever see someone seizing. It is a very scary thing to see but you can make it easier if you know what to do!

Update.

Hello out there in blogger land! I hope everyone is doing well in the new year.

First, I appologize for not blogging more, I know I promised I would a while back. The fact is that not much has gone on. I've been doing well, had a slight cold last month but it was no big deal. I've been snow boarding a couple of times. Last time I did really well with the altitude! YAY!

I'm still on treatment for MAC, its coming up on a year. I have a CF clinic appointment next month where I'll give them a sputum sample to culture. Cross your fingers that its still clean for MAC.

I have been seizure free for exactly 13 months! That is amazing! I know that I could still seize at any time, but the fact that its been so long is very encouraging. I could legally drive now if I wanted to (but I don't). I still try not to use the oven when no one is around and follow other precautions to keep myself as safe as possible in case I do seize.

Speaking of seizures, I have been meaning to do a blog about the dos and don'ts if you witness someone having a seizure. There are a lot of myths out there!

Ribbit!

Thirty!

My birthday was last week. I'm 30 now! I don't know a whole lot of women that we ok turning 30 let alone excited about it. But I am. 30 is huge for me. My CF seems to be pretty moderate. But when I was born the odds were that I wouldn't even get out of high school. So much for that!

The treatment of CF ha come a long way, and I give full credit to all the people out there who have done that. But part of it also that I'm not done here yet. I love life. I have an amazing family, a wonderful guy, and the best friends a person could ever hope for. They are the reason I keep at it, no matter how hard it gets or how crappy I feel. They need me, but I need them even more. Thank you all.

The best birthday present I could ever have is just having another birthday.