Update...

So I had typed the previous post up, wanted to add more but of course had dr.'s etc... come in and it was ICU so busy, I wanted to share more of my feelings of what happened, but that would have been a long post.

As for today they got more x-rays, if the air in my lungs is pretty much gone they will do the procedure this afternoon, if not we have to wait because it will do no good! But at the same time we can't wait forever because my body isn't responding to chest tubes like it should, the dr. said he's had patients with chest tubes for weeks! I do have a tear in my pleural wall which will just continue to do somsething, produce fluid etc... everytime I cough and move. So that's not good.

I also cough alot because that is part of Cystic Fibrosis! we produce more and thicker mucus (which is why the little chest tube keeps getting plugged) and therefore our cough is deeper and junkier, some people can identify us because of our cough!!!!!!!! So that doesn't help all this or the pain issue. Aaahh life in the hospital.

My husband has stayed with me since wednesday (although he did go home this morning to change etc... he didn't have any clothes with him when he came up since he came straight from school since it was an emergency!) this is the longest we've left the dogs, so they have been in a pen for two days! we do have a friend going over and taking them out two or three times a day and feeding them but they are so not use to being in the pen! they are spoiled little girls who are free all day, I know they are just dogs but I feel bad nonetheless, hopefully I will be home soon and things will be more normal.

I hope to post tomorrow and say everything is good, the procedure went well and not as painful as expceted (they say it's very painful) I just really pray and ask anyone to pray for me that this procedure will work the way it is suppose to and that I will not suffer any side effects or have anything go wrong with the procedure.

Take a deep breath for me!:)

Pneumothorax #3 #4 #5 #6

This was typed up Thursday June 20, 2008
Yes you read that right I have had four episodes of Pneumothorax since Tuesday evening to Wednesday morning, my chest tube kept getting clogged and I would then have air fill my lungs and it would get really hard to breathe, I know I am making it sound much less serious than it was, the very first one (or #3 in this case) was so horrible they almost had to intubate me, luckily one of the dr.'s came in and did a special thing to the tube and all the air came out. It is amazing how that feels, one or two seconds earlier and you can't breathe, then you really do feel like your lung is expanding and you can breath again!

So after this happening a couple times that night they sent me to ICU then the next morning it started happening again, they decided to put in a bigger chest tube (can we say PAIN!!! bigger may mean better but it also means more pain) they were planning on taking me somewhere when within ten mins. I was calling them again telling them I couldn't breath, then they set stuff up in my room and in twenty mins. the tube was in and they were taping up!

It is more painful but a lot better than not breathing! They want to do a cat scan but I can't lay flat so we'll see what they do, also I don't know when they will 'glue' my lung now, the less air that is in there the more effective it will be.

So I am still in ICU but feeling good enough to blog! Well that's all for now it's nap time!

Pneumotherax #2

That's right, I couldn't catch my breath on friday, called MH at school and had him come home and within 15mins. we were on our way to the ER!!!!!!! Once again I had air in my lungs making it really hard to breathe! Oh it is not fun! So transferred me to MICU and put in a chest tube (at that point you replace not being able to breath because of pressure to not being able to breathe because of pain!!) it's funny because you can totallay feel the 'air' escaping! the pressure just releases and I can breath again! Then the numbing medicine wears off and it feels like I have a sword in my side! a day or so later it just feels like a butter knife now.

I thought I might get out on Sunday, then maybe Monday, I'm now maybe hoping thursday! They are going to put 'glue' in there to 'glue' the lining of my lungs to the lining of the chest wall, well I had some air in so they waited another day and then today right before they got an x-ray and guess what? I have more air in my lungs! Also the chest tube has come out a little and for sanitary reasons etc. they can't just push it back in so I get a new one! Yipee for me! Then after waiting all day right before they do it he asks me if I have had anything to eat! Now I have to wait until tomorrow morning! Then they have to wait and make sure all the air is out of my lungs and then they can do the 'gluing', so I think I will still be here a couple days.

But I was able to get a computer again and it's so nice! I wish I had gotten one over the weekend because it made for a long weekend. Oh well I have one now. So I don't plan on getting out until at least thursday if not later.

My little sweethearts came to visit me today, they are so wonderful, although I think I need my sheets changed before I go to bed! It was worth it, I miss them. They missed me too it was nice to see how much they love and miss me.

More to come, now I can catch up on some blogs!!!!! wish I could do pictures!

CF Story...My story...

Since watching this I have decided to write 'My Story' of growing up and living with Cystic Fibrosis, it's not much different than this girls, and please remember that a lung transplant isn't the right choice for every CF person, also even when you receive a lung transplant you still have Cystic Fibrosis your lungs are just normal lungs, but CF affects everything in your body so you will still always be dealing with those issues, plus the new ones brought on by lung transplant (all the immune suppressant and rejection etc.) sorry I just know that if you don't know too much about it that a lung transplant seems like the miracle cure all and it's not. Enjoy the movie:) Eat some popcorn popped from your cell phone from my earlier post! HaHaHa!!!!

Cell Phone Too Strong????

WOW!!!!!! There are a couple of these on You Tube, this is amazing!!!! Maybe there is something to how strong our cell phone is, I mean if it can pop popcorn!!!!!
http://www.youtube.com/watch?v=V94shlqPlSI

Reading....

I was doing so good with posting, it's okay, it's only been three days... I have actually been reading and listening to books on CD lately, I use my Mom's library card to reserve books online because her library system is so much better than mine and so she brought me down like 15 books or talks on CD and 5 books! I plan on doing reviews but just thought I would mention the one I am reading and loving right now:

This is the best book! I love the way it was written and Sister Hinckley is such an amazing woman of faith and a great example of what type of woman we should be, reading it has made me want to be so much better, two things that get pointed out a lot are her faith and how she always lifts people up when they are in her presence. Those are two ways I strive to live my life every day too, and since I fall so short I will be saving quotes from the book to uplift me and keep me going and trying again and again.

This is a MUST READ!!!!

Puggle Trouble 2....

The title of the book describes Texas right now!!!! (I'll review the book in a different post)
She's at it again! Texas has been a little naughty lately, please refer back to this time, this time, and this time for previous Puggle trouble.
WHO ME?
LOOK HOW FAR DOWN THE BITES GO!
WHERE'S THE REST OF IT? THIS IS ALL I FOUND!
THE BOTTOM IS ALSO CHEWED, NO SURPRISE THERE!
THESE PAPERS WERE LAYING FLAT ON THE BOX, HOW DID SHE DO THAT?
I COULDN'T BELIEVE THIS ONE, LOOK AT THE LID! SHE TOTALLY SEPARATED THEM! AND YES THERE WERE TWO PILLS INSIDE, LUCKILY SHE DOESN'T LIKE THEM! I FOUND THEM IN PERFECT CONDITION!
SHE LOVES TO BITE THE BED SKIRT WHEN PLAYING WITH CHUGS...
ALSO ANY BLANKET (OR PILLOW) THAT IS AROUND..

BUT HOW CAN YOU NOT LOVE THIS ADORABLE GIRL? These are when she was a little girl.

Word of the Year....

I changed my word of the month to word of the year because I found a word that is perfect for my goal this year, I will still be researching and reading different subjects like Testimony, Faith, Prayer, etc... because they all have to do with my word of the year.... Discipleship!

First is a talk from Neal A. Maxwell perfectly titled 'Becoming a Disciple' found in Ensign, June 1996. Some excerpts that I found meaningful:

"There is no greater calling, no greater challenge, and no greater source of joy-both proximate joy and ultimate joy-than that which is found in the process of discipleship."

"Thus, while knowledge is clearly very important, standing alone it cannot save us. I worry sometimes that we get so busy discussing the doctrines in various Church classes that talking about them almost becomes a substitute for applying them. One cannot improve upon the sobering words of King Benjamin, who said, "Now, if you believe all these things see that ye do them" (Mosiah 4:10). Such is still the test. Deeds, not words-and becoming, not describing-are dominant in true discipleship."

"So it is that discipleship requires all of us to translate doctrines, covenants, ordinances, and teachings, into improved personal behavior. Otherwise we may be doctrinally rich but end up developmentally poor."

"In the journey of discipleship, we lose our old selves."

"For us, becoming like His Son, or "even as [Jesus is]," certainly is work ! (3 Ne. 27:27). Of necessity, this process requires the cross of discipleship to be taken up daily-not occasionally or seasonally."

"So it is that discipleship, far from being ascetic, is to choose joy over pleasure. It is to opt for the things of eternity over the trendy and appealing things of the moment. Eventually, we become readied for the final moment of consecration, when, gladly and completely, we let our wills be swallowed up in the will of the Father."

That is only half of the talk! Part 2 to come....(don't want it to be too long and lose any readers!)

My day today....

Just a little update on me today, I was still having a hard time breathing this morning and by this afternoon it felt a little worse and so we decided to go to the DR. we knew we needed an x-ray to see if there was any air in my lungs.

Can I just insert here and say how wonderful my Dr. is? nobody was answering their phones I called a couple different people and places and couldn't get a hold of anyone (the were all in a retirement party for someone) so I called her pager and she called me back right away (probably because she didn't know who it was!hehe!no she still would have, why do you think I have her number?) and told me to come and she would have the paperwork all ready to go to x-ray, I didn't have to wait at all (I remember as a kid we always had to wait forever for x-rays), then I was thinking we didn't talk about where to meet or talk after the x-ray but the receptionist told me that she already talked to him and told him to take me back to a room, we actually ended up talking for an hour or more and she did a couple extra stuff for us, she is so wonderful! I feel like she really listens and cares about me and my health.

So the x-ray showed no air but I do have some fluid in the left one so that could be causing some of the pain, as for the really tightness and trouble breathing it's probably from acid reflux that stuff is nasty! So hopefully I will be feeling better in a day or two. I did have a little hemoptysis last night so I started back on IV antibiotics, I was off for five whole days!!!!! Time to hitch that fanny pack right up onto my fanny, I was feeling like I was missing something lately! (because for the past 22 weeks I have been off a total of 12 days!).

At least there is no air! No chest tube, No hospital visit. The dogs sometimes sit (or stand?) in the weirdest positions....

Priesthood Blessing...

Today started out rough, no sleep whatsoever, I hate laying there all night awake but not enough to get up and go watch a movie (although I did turn on my iPod and listen to music) I turn over every hour and looked at the clock, man night can go by so slow! (maybe I need to include that in my previous post!!) I did fall asleep shortly after 6am but just startled myself awake because I thought the alarm didn't go off and MH would miss school, I turned over to look at the clock, it was only 6:30 I had an hour before the alarm went off!!!!

When the alarm did go off I could have stayed in bed but I felt so bad that I knew I had best just get up do my therapy eat breakfast and go back to bed and hopefully I would fall asleep since I had been up for a little bit, I rested (notice I didn't say sleep) for two hours I did feel better but I wish I would fall asleep, took a shower and that totally drained me, then as the afternoon progressed I just had a hard time breathing, I tried to take a nap, again I kinda rested but my face was sweating even though I had the fan on. Finally my husband comes home from school and that always helps me, he could tell I was having a hard time breathing, we were talking about if we think it is pneumothorax and if we need to go to the ER for an x-ray to see.

I was having a hard time eating dinner, I just didn't feel like I could breathe while chewing! So we decided we should go in, I asked for a Priesthood blessing and our good friend and neighbor came over to assist MH, it was so wonderful (like any of the aren't?) in the middle he said '...that your symptoms will be gone and you will have a feeling of comfort and peace..." and immediately I felt my lungs open up a little and I could breathe a little better, my heart also slowed down (it had been beating fast for a couple hours) and a feeling of comfort and peace came over me, no this isn't a 'I was healed' story but a miracle in my life nonetheless, my lungs still hurt and it's still hard to breath like it's been for the past couple days, but not worse than it's been, so we will wait and see if I get worse then we will go in but after the blessing you could just tell I was different, a lot more peaceful and calm and breathing just a little bit better.

I wish I could share everything that was said in the blessing but that is in my personal journal, but it's amazing how the Lord knows you personally and what's in your heart and what your mission in life is. I have been praying to know what I am suppose to be doing to fulfill my mission on this earth because I have been told in other blessings that I will not leave this earth until I have fulfilled my mission so there is still something for me to do, I got an answer to my personal prayer a couple weeks ago and it was confirmed tonight in the blessing, at least I know a little something of my individual mission.

I just wanted to share this along with my testimony, I know just as Joseph B. Wirthlin knows that:

"God’s love is complete and without limit for you and for all mankind. He is perfectly just and merciful. He is perfectly kind and understands your circumstances and condition. He knows you better than you know yourself.

Because your Heavenly Father is perfect, you can have complete faith in Him. You can trust Him."
Joseph B. Wirthlin, “Growing into the Priesthood,” Ensign, Nov 1999, 38

I too know that God's love is complete and without limit for me and for you, I too know that He is perfectly just and merciful, He is perfectly kind, I too know that He understands our circumstances and condition, He knows what we are going through! Elder Maxwell has told us that in addition to "coping successfully with those of life's challenges....there are also our customized trials"* And they are customized because He knows us better than we know ourselves, He knows how to help us develop our character to be like the Savior. I too know that because our Heavenly Father is perfect we can have complete faith in Him, we can trust Him, He's perfect!!! He will not give us anything we can't handle or learn from! It's all for us, so we need to place complete faith and trust in Him as we journey and endure this life.

*Neal A. Maxwell, "Apply the Atoning Blood of Christ," Ensign, Nov. 1997, 22

Favorite things swap!!!

I did this swap last year and it was really fun, if you like swaps head on over to Kelly's blog and sign up! Hurry you only have until June 6th!!!!

it's really quite simple: as a participant, you will be asked to choose at least three objects (i don't think anyone would mind if you decide to send more) that are some of YOUR favorite things to send to your partner... maybe it's an apron you made, your new favorite book, or that favorite flavor of lip gloss. be creative & most importantly have fun with it! objects can be new or vintage, bought or handmade... just remember, it is best to send something the you'd be pleased & excited to receive yourself.

TIME...

Today was a good day (well my lung still hurts but I figured if I don't sit up straight it doesn't hurt as much so sitting hunched at the computer is great!) and I can't believe how much I have gotten done! And it's only 4pm!!!! I still have tons of the day left!!!! I haven't done big things, can't do those, but I have called people back (which I am so bad at) emailed, organized loose papers etc., I even took a nap! Just a day like today really makes you think about time, we all have the same amount and whether we use it or not it goes by fast. Although I do know that if you watch mindless TV the time goes by super fast, that is how you get through the day when you really really don't feel good!
I loved making brownies.

What an interesting thing time is, of course we all want and may need more of it in a day and we always wonder 'where did it go?' at the end of the day. I have been amazed this past year how fast time has gone for me, before I got really sick I was a regular wife/employee/patient, I worked part-time as well as did hair at home, I took care of everything in the house (laundry, cleaning, bills, errands, etc.) I loved to cook, although I am more of a 30-min. meal, not a lot of ingredients kinda gal, at one point I made my own whole wheat bread every week, I would juice fruits and veggies, and I even made homemade wheatgrass juice (you have to buy a special juicer for that) I was trying to learn to sew better I had so many projects started, I loved to vacuum I would do it twice a week, I was a wonderful wife (still am), one of the things I do to take care of my health is therapy three times a day (it takes 30mins each time), I was a primary teacher and the Activity Days leader for 11yr. olds, loved to read and was part of a bookclub, we only had Chugs then but we took her for a walk every single night (and we lived in a hilly area so it was good exercise) plus I somehow managed to watch some tv shows!. I had the same amount of time and yet I accomplished so much in a day! I was always doing something, go, go, go...I even did stuff while I watched TV (then I didn't feel as guilty) I did so many cross-stitched items. Now I will go days without doing or accomplishing anything and the days still go by fast! I thought that I would be so bored that the days would drag on and on, it's just the opposite! Time is flyin' by! Days come and go, don't get me wrong I am so glad that they don't drag on but at the same time I can't believe that I didn't accomplish anything! or that I paid one bill and that was my accomplishment for the day.
Cross-stitching a book marker while watching TV and snuggling the dog.
A cross-stitch I did for a Halloween Swap.

I don't like wasting time and yet I can't do anything about it when I have bad days, and even though my husband tells me its okay because I don't feel good, I still feel like I have wasted time and life actually, I want to be enriching my life and still learning or still using my talents etc..not wasting away my life by filling it with mindless TV or to be honest blog surfing (reading friends blogs and some new friends is fine, it's when you are just sitting there hour after hour clicking on this name and that one until you have no idea how you got to this persons...although you might end up finding a new friend, I have done that several times.)
Baby booties I crocheted for a friends baby.

I don't know if I can ever by 'okay' with the days that I don't accomplish or enrich my life. I have gotten much better (we don't have cable anymore, kinda forces you to turn the TV off) I read a lot more (as in listen to books on CD or read past issues of the Ensign online, once in awhile it's a real book) but when I don't feel good it makes me tired!!!! then I end up taking a nap, blah, blah, blah, the day is wasted. Sometimes I think I want to take an online course but I don't know if I would have enough good days to do it, I should they give you a year! And I want to cross-stitch more (I started one for my nephew shortly after I found out my sister was pregnant and now he is here! I use to do small cross-stitches in a week!) but I just don't have energy too, which to me is sad! I'm just sitting there and I can't even cross-stitch!!! I guess it just takes a lot of energy for me to breath! Speaking of lots of energy to breath it also takes a lot of calories to breath, and you would think that since I'm home all day and loafing around that I could eat a lot and hopefully gain weight, not me! like I said time goes by fast and I feel like I'm eating all the time even if it's just a snack in between lunch and dinner, I think it's because I don't do much inbetween so it feels like I just ate or that that's all I do is eat! I also have to drink high calorie shakes because I need around 2500 calories right now to just maintain my weight, and I need to gain 20lbs! So this has gotten off subject. Do I erase it? Keep it? Copy it into a new post? I'm too proud of being able to write all this to erase it so you get to keep it.

So here's to time and may we all use it wisely and accomplish good things!
Speaking of time, it took me an hour and a half to do this post!?!