My Feelings.....

WARNING....THE FOLLOWING IS JUST THOUGHTS AND FEELINGS I HAVE BEEN HAVING OVER THE WEEKEND AND I AM JUST WRITING THIS POST FOR ME TO GET THESE OUT AND IN WRITING, MAYBE IT WILL HELP. SO JUST DISREGARD THIS POST I WILL DO A REAL ONE TOMORROW.

It's been a very hard weekend for me, very emotional and mentally hard, which I'm not use too, I've always been mentally sound and had happy thoughts and feelings, I know that the meds I'm on play into it but I always thought that I would still have control over them. It's just weird to feel this way and not know why or what to do, or how to fix it.

Friday was the day I notice it start, I just started crying when I was talking on the phone, silent tears but they came, then when I hung up they all just came, and the worst part is that right now since I can't breathe very well it's hard to cry! I can't laugh or cry! So that made it all the more worse, and it was a good cry which you might think is a good thing to get out once in awhile but I hate when I cry alot because then I'm tired, my eyes hurt, are big and puffy, even the next day I feel like I was hit by a truck! so Sat. morning wasn't good and my Husband forgot his cell phone when he went to school to study and I just sort of was a little panicky, nervous, it's hard to describe because I've never felt this way before, I'm very independent and strong, but I just didn't feel right, and I was still so tired and I tried to lay down and rest but it felt like if I went to sleep I would die, I know it sounds ridiculous and crazy but I did, and so I forced myself to stay awake, I sat outside, flipped tv..... finally my husband came home, felt much better, I thought maybe going out would help, maybe I've been in the house too long, my husband made me lay down with him and I didn't fall asleep but was able to rest enough that I actually felt a little better.

I left and ran a few errands, came home, took a shower and did a treatment (I do four treatments or therapy's a day) and then we went to our friend's house and that was just fine all was great, I did good, felt fine, that evening was okay, sunday I was okay, I continued to just have this nawing at me, I'm not ready to die, I don't want to leave my loved ones, understand I'm not afraid to die I mean I won't have this body holding me back anymore!!! but I think it's still the unknown, we know but we don't. So I hate when I feel like that, and also when I feel like I'm slipping in health even more, I'm already on a scale of 1-10 I feel like a 3, I don't have far to go, I don't have extra space, like to fall, that's scares me, I don't want to be useless, I already don't cook anymore, I don't keep house like I use too, I watch tv all day and play on the computer!

I'm on 6 liters of oxygen per min. I know it could get worse but it's certainly not 1!!!!!!! and anymore and I would have to wear a mask and not a canula, or worse go on bi-pap all the time! I hate having no energy, I didn't cross-stitch at all!!! I hate watching so much tv and not doing anything during it! But sometimes I just don't feel like it! That's how I felt all weekend.

Monday was better and my husband came home at lunch time from school and that was so needed, I feel much much better today I feel I am mentally much better and I started my cross-stitching again, and there was actually something good to watch on tv tonight! Oh how I wish I had tivo with all the hours of tv I watch I wish I had tivo so I could watch stuff I liked and didn't have to suffer through hours when only stupid stuff is on. I am so grateful we have cable though, I would seriously die if I didn't!

So please if you've read this far, don't take any of what I've said the wrong way, I'm sure I will reread it and it won't make any since, I'm not a good writer. I just really needed to get this out, as that's my goal to record my thoughts/feelings/journey of my life right now.

Fun Night

Saturday we were able to go to a friends house (the guys watched the UFC fight), they have to cute little kids I didn't get a picture of their little girl before she went to bed but this is their little boy and pictures of the rest of the night, I also introduced the wife to the blogging world! Yippee!!! Hope she creates one soon!

Pay it Forward Gift Exchange

I left a comment on Natalie's blog, don't know if I'm one of the first three, but lets hope so! The first three people to leave a comment here are the winners of my PIF, please include your favorite color and a hobby of yours (to make the gift more personal). All you have to do is the same thing! You will then Pay it Forward to three people as well. Make sense? Did I write that right?

I think I will make this a little harder by saying that those that won my blog contest recently are not eligible (I'm still working on those gifts!)

A little clarity

I just want to clarify that I don't mind the stares I get, everyone stares at me, I know I'm different! It's funny how adults think you don't know that they took a stare at me but when you are the person being stared at you know!!!!!! It's fine, I do take it as a learning opportunity, that way when they see others with oxygen it won't be so new to them! And all the little kids that stare (and boy when you go to church that a lot!) I tell them it helps me breathe so then they know what it's for and it isn't some freaky thing. So I do tolerate (you never get use to it or like it) but when I was just standing there and the boy stood just a foot or so in front of me and openly (like he stuck his neck out a little and his mouth opened just a tad) stared and more than just a second, I felt it rude, and a violation of my private space. And to be so old I just wondered if he parents had taught him not to stare.

This reminds me we went to a little burger joint and my husband went to the counter to get our order and this weird (yes weird, old and funny lookin') guy yells across the way 'how long you gotta year that?' I politely said 'all the time' and looked away I don't want to 1)engage in conversation with this guy and 2)talk about my oxygen! He said something like 'it didn't work for me' I was just praying for my husband to come back. And you really want stares, wait till you park in the handicap parking!!!! That will get you stares!

Oh what a wonderful world we live in!lol

Me Again...and Again...

Marie asked why I had to have the IV's continously, well as I said I'm special, extra special, I have a bug called Cepacia it has five different classes, you guessed it I have the worst one! Cepacia is resistant to a lot of drugs, they test my sputum to see what drug combinations work on it and this is what we got! If the drugs are running continuously then they work more effectively. Also Cepacia is the reason that people with CF can't hang out together! (though some do) Because I can give it to them and then that would be bad. Also because of Cepacia I was on a drug that is very strong and since last Aug-Dec. I was on it a whole lot, I lost a lot of my hearing, it sounds like everyone is whispering to me, I have had to turn up the tv almost as loud as it will go, in church I can't hear the YW in my class, they speak way too softly!!!

I'm not complaining, I'm alive and doing better then I was so I'm not complaining. I still have more to fill you in on my journey since last Aug. and you will know that even though I can't hear very well, I wear oxygen all the time, I only cook like once a week, I try to do the laundry and dishes when I can (my husband is so wonderful to do all these things) What I'm saying is I can't do much but what I can do I'm thankful for.

Me Again.....

I was just looking at the picture in my last post since I received a comment saying I was pretty and gorgeous so I had to look again!!!! I noticed that you can see my 'belt' so I thought I would explain that part of my life too.

Here is the wonderful Camelbak that joins my wardrobe from time to time, I wear it 24/7 when I do wear it (or I will put it's contents into a purse if it will look to funny to wear, like with a dress) and it weighs 10lbs (I have weighed it) what do you ask is in it?????

A bag full of IV antibiotics, you see I am super special! Not only when I am on IV antibiotics are they continuous (meaning I don't stop them, they aren't the kind that you just run through every 6 hours for 30mins. or so, not me I get continuous!)and that's not all folks, it's not one but two!!!! that's right, two continuous antibiotics, and the cherry on top??? one of them needs has to have an ice pack with it to keep it cold!!!! I guess the bright side would be that the other one doesn't need an ice pack?

When I was working in the salon I thought on numberous occasions that I should wear it in the front under my smock and just pretend I was pregnant, I think I could deal with the 'when are you due' over the 'why are you such a freak' much better. Again good side: I was able to make a lot of people more aware of Cystic Fibrosis?

And boy am I a hoot now, I not only wear this big fanny pack but now I also carry around portable oxygen too! Speaking of which, when we went to R.E.I the other day we were waiting to talk to the employee with the funny shoes and this boy about 9 or so walks over and stands right in front of me and just totally stares at my nose!!!! I wanted to throw my hands up and shout 'BOO'!!!! it was actually really uncomfortable because I know I don't look 'normal' and usually people will stare for a little bit but I can handle that but this boy, man I wish I knew where his mother was because if I had the guts (which I don't I would never do this) I would ask her why she hasn't taught her son manners!!!

So that's the story of my 'bag' I just got off my antibiotics after four weeks and hopefully will stay off of them for awhile.

Me Again.....

I just read on my friends blog that one of her neighbors has been going through Chemo and she didn't know what to do so she took over a gift and card. What she did was perfect! Let me share my experience.

When I first got sick in Nov. '02 we were pretty new to our ward there, but they knew who we were because my VT'ers came and visited me in the hospital and at the time I thought everything was fine and I was going to be going home the next day! Needless to say that was the night that I got put on a ventilator and then spent the next week in ICU!!

Well, first off I was in the hospital for two weeks and nobody called or left a card! I mean nobody, and the bishop even knew I was in the hospital longer on the edge of death! I came home and then proceeded to go back to the hospital every week for 3-4 days I would come home and then have to go back again!!! And I never heard from my VT'ers again! They knew I had been sick, they visited me in the hospital, yet no check up to see if I did make it home or how I was doing, not even at christmas time was I remembered!!! This went on all through out dec. and half of January! And this whole time NOBODY called or came by or wrote a note. So the first sunday back I half expected a 'are you new?' or 'I don't remember your name' or at least a 'welcome back' I got NOTHING!!! nobody said a word to me!!!! Honestly that was the first time I ever thought of not going back to church! I couldn't believe that with all I had been through the last two months and nobody cared. I finally decided that I don't go to church for the social aspect and went back.

Over the next two years that we lived in the ward it got better when I would be sick and go to the hospital, a few people would remember us and care about us. Sometimes I think people rely on taking meals in as a way to replace caring or shows that they care. In our ward now they are pretty good, our bishop is amazing, but I have still felt the out cast! NOBODY comes by to visit! NOBODY calls! NOBODY leaves cards (okay now I'm tearing up). I thought I had friends, we live in a cul-de-sac and I thought we took care of each other! there would be times that I have been sitting outside (with my oxygen tube it only reaches in the back yard, if I want to go further I have to change to my portable one) and my neighbor might wave to me but not make the effort to come say hi! or once my own VT walked right by the gate and just waved! Didn't say hi or ask how I was!!!!!! it really hurts! But I don't want to have hard feelings toward them, I try to look at it from their shoes, they are uncomfortable since I am wearing oxygen?....that is what brought me to the blogging world so much because it was friends, there was caring and sharing, I felt a part of the outside world again.

I know this didn't come out the way I wanted it too, the main message here being that if people are sick and you don't know what to do for them, a card or email (if they are on the computer a lot like me) or a phone call is so nice, just letting them know that you are thinking of them will mean so much to them! Trust me I know.

I know in the picture I don't have oxygen on but I do have to wear it 24/7 I just take it off for pictures!