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.

It all comes at once.

Why is it that I can go for months without setting foot in my hospital (other than to pick up meds) and other times I go months where I have at LEAST one appointment a week, maybe more.

So lately my pain has been REALLY out of hand. I got the stuff done to get seen at the pain clinic at UW again. There was some drama the day before the appointment that I just don't want to go into because I was really upset. Anyway, the doc flat out told me that she doesn't know if there is anything she can do for me. Are you fucking for real!? She's a PAIN SPECIALIST....supposedly. Of course she wants to consult with all of my other docs, which I expected. I go back to see her tomorrow to see if she came up with a plan. In between these appointments she referred me to a psych. Of course she told me it was because she wants to see if the shrink has any ideas for meds that might help me. But of course its because she fucking thinks I'm drug seeking. If she wanted ideas she could review my history with the shrink on her own. Whatever, I'll play ball for the time being. I do have a lead on another pain clinic in the area though.

I've been having a lot of "I think I might puke" so I went in for blood work on my liver. The ethambutol I take for the MAC can cause liver issues. I also got a scrip for zofran, oh how I love thee. The blood work came back and one of the levels was elevated but of course when I asked what it measures exactly the dumbass nurse couldn't be bothered to explain it to me. And I was out and didn't have a pen with me to write down which test it was so I could look it up myself. She's so annoying.

I went to my primary doc's office about pelvic pain. I swear if I still had my appendix I would have been in the ER a long time ago thinking I was going to die soon. The doc dug around in my lady bits (for the THIRD time this year!!!) but since she didn't feel anything out of the ordinary so she didn't order an ultrasound or refer me to GYN. My head hurts. Normally she's really cool and listens to me. I'll ask my CF doc to do the refering. Or maybe even the pain doc tomorrow.

Anyway, that's about it for me. I hope everyone out there is doing great!