Monday, March 30, 2009


Ok I am at my wits end here!

I have a few blogs that are invite only but I can not get to them because I get an error message that says "cookies and java need to be enabled" FUCK THEY ARE! I can't even email for help because the same flipping message pops up! WTF?!?!

I'm at a loss and it has been a few days.

Anyone have any ideas?

No hitting the back button when I get the message does nothing either, I have gotten that advice a few times already :)

Thanks for any help!

P.S. maybe an admin of blogger can read this and comment and tell me what to do?!?!?!?!?!?!

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Wednesday, March 25, 2009

Been some time

I just realized that it has been a while since I blogged. Ok not really THAT long but for me it is haha!

Nothing to really report. My mom had her back surgery today to scrape the disks that are rubbing on her nerves so she can be pain free again. This is the third one in 14 years so she is "used" to them. Everything went well and she will be home tomorrow!

I am still very junky and wearing my O2 pretty much when I am home since my HR is so high. Doesn't seem to be going down too much though just high 90s which is still better than 110+.

I go next Wednesday the 1st for my 3rd study visit and I will receive the medication or the placebo. I am REALLY hoping for the medication since if I don't get it I will be in the hospital soon. I am so SOB its ridiculous!!!! See what a month without any strong abx does to me LOL!!!

I got to meet Bill on Sunday! He was driving down to meet up with Courtney on Monday for a day in NYC so I drove out to meet up with them. Court couldn't make it that night but Bill and I still had fun. He is an awesome guy, super sweet and a cutie! We got something to eat and then walked on the beach since it was right there. It was great exercise! LOL.

That's about all I have to offer.

Saturday, March 21, 2009


I mailed them to my friend on Wednesday and I am HOPING they fit her little girl!

I am working on the baby blanket now and it is coming along. I need to have patience and crocheting is helping me with it. I find myself wishing it was done so I can see the finished project and I need to remember that I HAVE TO FINISH IT LOL

Friday, March 20, 2009

First day of spring

Does THIS look like the first day of spring to you? Woke up to snow! And it was 60 yesterday!!!!!! No wonder everyone is getting sick sheesh!
Sent from my Verizon Wireless BlackBerry

Wednesday, March 18, 2009

Study Visit 2

Well I had my visit today and apparently I am healthy LOL

My FEV was actually UP 1% to 42%. Go figure! I feel like ass and am coughing up so much shit and my numbers go up. Still SOB and still tight but other than a few extra crackles and coughing more nothing is wrong. I go back again in 2 weeks to be administered the drug or the placebo. If I am feeling at all shitty before then obviously I should call. But since I am not running any more fevers and my numbers all look ok we are going to see what happens. I know all you proactive people out there are yelling at me. But I do feel better even if I feel yucky. The mucus is still yellow but a little thicker.

So I guess I did over react LOL!

And is it wrong I am kinda disappointed I didn't get thrown in? I mean I know that sounds bad but I was sort of looking forward to 2 weeks of not having to do dishes or wash, not having to cook or food shop, not having to work and doing nothing but reading and crocheting. I'm a horrible horrible person but I can't help it!!!


Monday, March 16, 2009

Feeling like an idiot

I'm actually wondering if I over reacted and won't be admitted on Wednesday? I feel better today though I have a sore throat and stuffy nose which means a cold of course. My O2 is pretty normal with only a few drops into the 80s. I guess I will wait and see what Wednesday's PFTs show. I feel stupid since I told a few of my friends that I was going in. Makes me seem silly IMO LOL

Saturday, March 14, 2009

Sheesh a lot today haha!

Well I am pretty sure my DR is going to want to admit me on Wednesday when I go for my study visit. Between the fevers at night, the increased cough with green sputum and the low O2 numbers/high HR numbers, I can't see how I will NOT be admitted. I guess it will depend on my PFTs but at this rate I think I NEED IVs! I have been off of everything strong for a month now (Tobi and oral Cipro) because of the study so my PA has had the chance to run rampant. I don't know how this will affect the study seeing as it JUST started for me and I haven't even gotten the med/placebo yet. So I dunno.

All I know is against my better judgement I am going out tonight and enjoying myself and living it up since I will most likely be in patient next weekend LOL. At least I won't be for St Patty's Day =D

GO IRISH!!!!!!!!!!!!!!!!!!!!!!!!

I love spring!

I know it hasn't officially started yet but the flowers are blooming at my house and I had to take a picture! Mmm I can feel the warmth of the sun on my face already.....
Sent from my Verizon Wireless BlackBerry

ABX resistance Article

Thanks to a friend on CF2chat for posting this link!

All about sponges and how they secrete a secret weapon that could make antibiotics effective again after they become useless with some bacteria!


Ok my dam hyperlink button won't work! I will try to edit it later. Sorry folks!!!

Just copy and paste this link into your browser.â??s_secret_weapon_restores_antibioticsâ??_power

Wednesday, March 11, 2009


I am wondering if I am at the start of an exacerbation and not really aware of it. My O2 and HR numbers are ridiculously low/high even for me. Even on O2 I don't seem to be coming below 95 (HR) even though my O2 is up around 97-98%. At rest I am around 93% (which is relatively normal for me) but my HR ranges from 95-125! WTF?!?!

Luckily I have appointment #2 on Wednesday for the study and either my Dr or the NP will be doing the physical so I can let them know. I made an excel chart of my stats and I will print it out and take it with me. Then Dr H can decide what he wants to do. I am also VERY SOB today. Very tight too. Hoping it was a day thing and I will be fine tomorrow.

Other news...Strawberries are NOT my friend! I had thought maybe it was the blueberries but stopping them did nothing. My mom said she can't eat strawberries for the same reason. So I stopped them yesterday and today and NO issues. Guess I can no longer eat strawberries :( So sad!! But better than shitting my brains out huh LOL.

Monday, March 9, 2009


This is why I love my dog!

She let me put the mini bootie I crocheted on her! Yes that last picture, that is her tongue licking me haha!!!!!

And here is a video of her wandering around my mom's backyard. She what happens when you are blind! LOL


I don't know why this has me so annoyed but it does. In total response to Darby's comment on my last blog about my man rant. I have no idea who thought it was him I was talking about but I would rather people tell me then going telling everyone else. Quite frankly I take it as an insult that someone would think I am THAT upset over a guy who I "dated" for 6 weeks, broke up with 3 months ago and ended it MYSELF!

The people close to me know this and would hopefully not assume that I would freak out over something regarding him. I hate that I have to dedicate a blog post to this but it really got under my skin.

If you want to spread rumors about me can you at least make them juicy and fabulous instead of demeaning and ridiculous?
Sent from my Verizon Wireless BlackBerry

Friday, March 6, 2009

Fucking men fuckers

Total man rant - totally R rated so leave the kiddies in the other room.

Oh I am so fucking pissed I could spit fucking nails!

I was played, I know I was played. I KNEW I was being played. Yet I am still pissed. Well my dear playa friend you are a fucking tool, douchebag, jackass and I will never so much as grace you with touching me again. I will let you talk to me and I will taunt you and show you just what it is that you are missing. Don’t bitch to me how much you hate her and can’t stand her and that you aren’t really together. Don’t fucking lie to me and expect me to be ok with it. I thought you told me the truth, but you told me only part of it. I should have known. Well guess what? There are so many better men out there than you that will appreciate me and all I am worth so fuck off you slime bag and go fuck some other girl who thinks you are the hottest thing since sliced bread!

I don’t want to hear any I told you so’s from ANYONE out there. I will erase them so if you do leave one you can fuck off too k? No one knows the entire story except a select few so I don’t need anyone not in the know telling me what to do. You can fuck off too k?

Wednesday, March 4, 2009

Clinic...and study visit 1

It went fairly well today. I got there early since I knew I had to talk to the woman about the Inhaled Cipro study. She gave me the paperwork and I signed off on it all. Sounds awesome to me! Double blind placebo controlled study, which means I may or may not get the drug. But either way I am excited to do it. I had blood drawn, urine test to make sure I am not preggers (passed phew LOL), sputum sample and x-rays. I was only there for 3.5 hours today which surprised me. I thought for sure I wouldn’t leave until 5 or so. But I was out of there and home by 5!!

I had a fabulous time talking with the woman! I learned a lot about Dr H and CF. We chatted about the different schools of thought (i.e. Danish method, genes vs. compliance) and she and I have very similar thoughts. She also has very similar thoughts as my Dr. She was telling me just how well respected my Dr is in the CF world. All the different conferences and lectures he has given on the subject. It made me feel super lucky to have him as MY DR!!!!!! And also that his dad was an Arizona state senator back in the day!! And there is a hall named after him at Arizona University! COOL!!!!!

I must say that now my lungs are KILLING me from all the walking I did. we had to walk around Penn Presby for the x-ray, blood work, etc. And of course it's not like I just walked I had to talk the whole time too. That went well LOL...huffing and puffing but still determined to talk!!! So now I am paying for it was cold out!!!!

Now for my DR visit. I lost 2 pounds (down to 119 - still great) which I had expected given my shitting issues. He said to try Miralax and see if I can clean myself out. It could just be built up sludge in there reeking havoc on my system. So looks like I will be shitting my brains out this weekend, voluntarily! If that doesn’t help I am to call him.

My lungs didn’t change at all. Seriously! My Liters last time were 1.24 and they were 1.24 this time too LOL! FEV1 40%. My HR was 104 and my SpO2 was 94. I didn’t get to see anything else since I was never alone and was always talking to someone. I was busy today LOL!!

I told him about the bloody noses and he said I need to huff more in the mornings so I don’t put so much pressure in my sinuses and pop the vessels and to try this thing called nasal gel which is supposed to help keep you all moist in there. We will see about the gel, I might just kick my ass and get into irrigating more frequently…ok actually doing it!

He also asked about my O2 and HR during the day and I told him it ranges from 100-115 at rest and around 93-94%. So he said to keep track and if I am around that at home to wear my O2 and see if it helps bring me down to around 85 HR. That is the only thing that made me kinda nervous. Almost like telling me full time O2 is needed though he didn’t say it. So I will be keeping a book with me to record my numbers and see how everything goes. I want to also make sure I am saying what I was doing when I checked.

That is all for now!

Oh edited to add:

I should mention that as part of the gene testing for colon cancer I will be seeing a gastroenterologist. So if the Miralax doesn't work hopefully they will have answers! Now if they would just call me back.......................

Monday, March 2, 2009

Still in pain

Yep still got pain in the gut. Well I shouldn't say STILL since I was pretty good all weekend. Last night, ah it was ok, then today at work BAM! Cramps bad and feeling like I was going to vomit. Now as I sit here I am in more pain, still feeling like I am going to vomit. And my belly is swollen even more now and will not move!

Thankfully I see DR H on Wednesday so I will tell him about my woes and see what he wants to do.

Man I hope I don't have to shit in a cup!