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?

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...plus 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.......................

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!

Moving on...

I have decided that I am done "pining" over my crushes. Men who I like if for no other reason than hot sex, good body, or just being funny. Yes hot sex, I love me some hot sex and one guy I "crush" on his delicious!!! But that is besides the point.

Anyway. I am happy as I am being single and I realized that most of my pining was because of what that person could do for me. Mainly supporting me when the time comes for me not to work.

But I need to get over that and not like someone based on what they can do for me. I am too much of a romantic for that!

So my new though process is to be rid of these, jealous, lusty, longing feelings for men I will never wed and move on to more important things, like crochet ;)

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CF story!!!

Since I have been tagged I will join in the fun!

I am so using Piper as a guide since she and I have a lot of the same things LOL!

Here is my CF stats list!!!! 

I am 28 years old and will be 29 in October! 

I was diagnosed at 5 years old.  My mom took me to all the good hospitals in Philly and all they told her was I was allergic to everything!  So she stripped my room down to the bare bones and cleaned every day.  Yet I got worse.  I could also eat more than my 250lb dad and I was 2 years old.  My mom KNEW there was something wrong.  FINALLY our family DR who works from his house diagnosed me.  Told my mom I had CF and to get me sweat tested.  162 was my number ;)  I think it is safe to say he was right! 

Funny thing that I think relates to the whole CF thing.  My dad is one of nine and not a single one of them was under 9 lbs when born.  Same with my most of mu cousins and my brother.  I was 6lbs 9oz when I was born.  I think there is a correlation!  

My mutations are DDF508 

I participated in the Penn gene therapy study back in 2000 (I think) but it got canned when some guy from another study died and his family sued (HELLO we signed papers saying that could happen!!!)  WTF!  Fucking sue-happy assholes!  

Never had a sinus surgery and have yet to get CFRD…like Piper said “Take that CF!” 

I rode horses when I was younger doing lead line then I started again when I was 14 and rode till I was 18.  I did show jumping on Hunters and LOVED it.  I still miss it terribly and I have dreams at least 3 times a month about riding and the farm (my dad and aunt own a farm for riding).  I stopped when I went to school and just never found the time to get back into it.  Now I am not in shape enough, nor do I have the energy/health to do it…baby steps though so maybe one day… 

I never went to CF camp and never knew about them until I joined the CF forums online!  I also never had a Make a Wish and never knew “we” could get them until I joined the forums.  My mom always thought it was for the dying kids with Cancer etc. 

I had a beating board too.  My Aunt made it for me and I would lay on it upside down with my arm over my head and my mom would beat me.  Then after 3 minutes she would do the “shake” thing and then I would sit up and cough.  That all lasted until I was big enough to say go away LOL!  Then I didn’t do CPT again until I got my vest in 1999.  We used to use my board when I would have sleep-over’s as a couch and we would all sit on it and try to not fall into each other haha!!!! 

I always thought I was the only one in my family but my dad told me a few weeks ago that he had an older cousin with it.  I still have to call my Grandmom and get details.  I have no idea if my brother has ever been tested but my nephew is healthy and I am hoping the next one is too. 

I wasn’t hospitalized for a tune up until I was 18.  I was death walking and it felt so good to get treated.  After that I stayed out for 2 years, then 3 years after that then 3 more years then 3 times in 6 months…now I am hoping to make it a year at a time.  Guess they call that progression. 

My FEV1 has never been over 100% (at least according to my chart which I trust since it is copied from the one I saw my whole life at every dam appointment). 

My weight was always an issue for me up until this past year.  I am finally at a healthy weight and my lungs took a shit…figure that one out! 

My FEV1 hovers around 40% right now and I am hoping with the Inhaled Cipro study I am starting next week I might get it to 45-50%. 

I love my DR like my own father and God help me if he retires or dies before I do.  I will be lost and devastated!!!!  I would also love to move around and live in different areas but that would mean leaving him and I won’t do it.  Call me stubborn but he has been my DR since I was 5.  How is THAT for commitment! 

I am obsessed with going to school and kinda of secretly (well I guess not now) am looking forward to the day I have to go on SSDI so I can go back to school full time and hopefully have the government FINALLY pay for it! 

That’s all I can think of for now!!!!

C. diff?

I am looking up C. diff since I haven't a clue what it is except it affects your bowels.  WHY am I up at 6:30 am on my day off looking on the internet?  I'll tell you why, I have been up since 5 am with major cramps and loud noises coming from my gut.  It's NOT a pretty thing.  I look about 5 months pregnant and feel like I am going to barf.

Fun Times!

I'm going to call my DR today and see what they think.  It's been over a week now that my gut has been giving me issues and I am tired of it.  

I'm tempted to post something on CF2Chat to see what it could be, but poop grosses me out and I don't want to...so if any of you that read this have any ideas lets hear em!!!!

And yes I am well aware that this is a public blog and MANY more people may read it than the CF boards LOL!!!!

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Continuation and update of last one

Thank you all for your wonderful comments and making me feel like I am not a total bitch for feeling the way I do :)

The vet called me today and guess what?  MAGGIE IS THE HEALTHIEST 14 YEAR OLD DOG SHE HAS EVER SEEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She said the blood work came back and she was totally shocked to see just how healthy my baby is :)  Best news I have had all freaking month!  And even better is she is back to normal, no pooping blood and not throwing up.  The only thing she noticed was a very slight increase in her liver levels but considering her age it is nothing to worry about.

How fantastic :)

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I have issues

I’m stuck in between a rock and a hard place.  I felt frustrated and annoyed this morning.  Maybe it was the past 4 weeks worth of events that have set me off again who knows.  3 deaths in 3 weeks.  The day after each funeral the next one passed.  I am hoping this is the set of 3s.  Though I did not personally know 2 of them they still hurt.  We lost one police officer in my township, the day after his funeral Jenn died.  The day after Jenn’s funeral we lost another police officer in Philly.  Today was his funeral.  Will someone else pass tomorrow?  Just so odd to me.  But perhaps not.

Then of course my Maggie is sick.  She threw up on Tuesday night and had the shits but seemed ok and Wednesday morning she ate and pooped fine.  So I thought nothing of it.  I came home from work Tuesday to find her pooped all over my room, wet my bed and threw up a few times.  But the poop was “normal”.  I was not too worried yet since she was still eating fine and acting normal.  Then yesterday, I come home from work to find my room covered in bloody poop and throw up.  I immediately called the vet and they told me to bring her right in.  I did so.  The vet thinks it is just a virus since she is acting ok.  They did some blood work and gave her IV fluids since she didn’t want Maggie drinking or eating last night.  I also got some anti-diarrhea meds to give her.  $400 later and we went home.  She has been fine today, no throwing up and no pooping nasty goo.  She is sleeping on my lap as I write.  My mom checked on her a few times today to make sure she was ok, since I was to bring her right back in if she continued the way she was. 

Then there is me and my tummy issues this past week.  I don’t know what I ate but my stomach has been on the fritz since Monday.  Still is.  My diet hasn’t changed and I haven’t forgotten to take my enzymes any more than normal.  Maybe Maggie and I are having sympathy shits together (TMI but sorry!).  To add to that my nose has been on the weird side too.  I can trigger nose bleeds from coughing and do so sometimes, but this past week I have had 3!!!!!  That is more than I have had all year.  Last year I had maybe 3-4! 

That of course brings me to the true intent of this blog.  The reason for the rock and hard place.  It is my heath I talk of, in case anyone has been living under said rock and hasn’t a clue.  I find myself wishing I was sicker than I am.  Nuts huh?  But its like I just want to get to transplant so I can start living again and get the wait over with.  Sounds crazy I know.  I don’t want to exercise and maybe bring my FEV1 up 5%.  That won’t get me anywhere.  I need like 20%+ to do what I want to do and to truly feel like I am living.  And then I feel like a total bitch because some of my fellow Cystics are struggling everyday to breathe and would give anything to have 40% back.  

I do appreciate where I am.  I do appreciate that I can still work and that I can still function.  I just hate the “when will I crash” that seems to infect me.  I live everyday wondering if today I will cough up insane amounts of blood.  Or if one of my lungs will collapse.  Or if I will just do something wacky and CF related and be out of commission for a while.  It’s so hard to explain.  And I don’t feel like this every day.  Just a lot recently. 

All these overwhelming emotions hit me on the turnpike this morning.  I was thinking how most likely my office will be the last place I work before I die or get a transplant.  It made me sad.  Not because I don’t love my job and the people I work with but because I am 28 years old and I am thinking of that.  Because it is a reality.  Then in the same breath I hear a commercial on the radio about getting your teaching certificate in 12 months to teach secondary school and I find myself wanting to look into it.  WTF is wrong with me?!?! 

UGH I am a mess.  And for no real good reason.  I shall go finish off my book, sleep well, purchase a new needle tomorrow and continue my crochet lessons. 

Good night and sleep well my blog loving friends.

I miss riding

I had to go to my aunt's webpage tonight to get the address of the farm for my brother.  So of course while I was there I decided to look at the horses for sale.  I want Wilson :( (here).

I'm sad I want to buy him and ride him.  I want to be young and me again.  I want my lung function back.  I want to be able to handle riding again.

Done my rant, thanks!

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Quick update!!!!

I am doing fairly well with crocheting thoughI had a minor setback last night, ok major.  I BROKE MY NEEDLE!!!!!!!!!!!!!!!!!!!!!!!!  Dam plastic ones lol!!!  I will have pictures in a few days once I finish all my practice pieces of each new stitch.

Now back to CF :)

I got the call yesterday I have been waiting for.  I can start the Inhaled Cipro study yay!!!!!!!!!!!  The coordinator of the study and my DR both feel I am a good candidate for the drug so I am in!!!  I am super excited and will meet with her on the 4th when I go to see my DR.  I am not sure how long the study last or any details but she is going to go over everything that day.  I know I will be getting blood work, x-rays, and a pregnancy test to make sure I am not prego.  I wonder if telling them I haven't had sex in 3 months will settle their minds about it LOL!!!!  She apologized for the delay.  It has been a few weeks since I spoke with her (ok like 6) but she mentioned that they ran into some snags getting it approved.  Dam FDA :)  But it's up and running now and I am going to be a part of it.  Of course barring any setbacks when I go like lower FEV1, and need of an admission I will be set.  So fingers crossed I can still do it!!!

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