Freakin Out Here......

I'm kinda nervous. I guess I always get that way when I have a clinic visit (yeah I have to go tomorrow). There's the 2.5-3 hours trip (depending on traffic), then I'm afraid I'm gonna catch something on the way up to the clinic, I mean most germs are in doc offices, and I'm always afraid I'm gonna be sick even when I feel fine. I know this may sound crazy but I have had a couple of times that I was pretty sick but I had no clue till I did pfts. This time however I'm a little more gunky than usual. I'm coughing more and there's a lot coming up (not good) although for the most part it is pretty light so I'm hoping that it's nothing that cipro cant handle. But what if it's not......

I know for most cfers hospital isn't fun but they've been a few times and a lot have described it to me as "no big deal". But since I've never been (and a nervous person to begin with) I guess I'm a little freaked. Up until here recently I didn't know what a PICC was. I thought you got an IV in the bend of your arm (already ouch) but reading Ronnies blog apparently it's a giant long hose thingy that "goes to your heart" ummmm that sounds pretty scary to me but I guess I can handle it. I mean I went thru the majority of childbirth unmedicated so...

But recently reading the cystic fibrosis forums my biggest fear is catching some "mean" resistant strain of bacteria. I don't know if this happens alot but it scares me. The fact that I have pseudomas scares me enough. I have 2 types of pseudomonas both are very sensitive to antibiotics, but if I have those that means I can "catch" others!!! I've heard from my entire cf team that I need to "stay away from the internet" because not everyones horror story will happen to me. I guess the majority of my life I have been "protected" from the horrors of cf. Now it's just all hitting me at once! I mean I know it's good to educate myself because the horrors will be my future, hopefully not the near future but to be completely honest it scares the hell outta me! Everytime I go to clinic my blood pressure is crazy high. They have to recheck it again after pfts and the docs tell me I'm ok, then it's normal... the nurse called it "white coat syndrome" (is it really called that?).

I know it's been awhile since I've posted. But I kinda feel like a wuss when I don't feel the best. I like to rant and rave about not feeling good and freak out, so I didn't post because of that. I mean I have no reason to complain and I know that. It's sad but I feel like I don't fit in with normal ppl because nobody wants to put out there cig to be around me, and I'm such a germaphobe with the purell and all that it totally freaks ppl out. But then I feel like I don't fit in with cfers either. Because I haven't been through a lot and can't relate. A lot of it is that I can't open up because then I feel like a wuss. I've never had issues gaining weight, I complain about being too fat (yeah I've gained more weight :( ) and I've never had a bleeding episode (God that just sounds scary). I've never had to wear oxygen (ever) or as some refer to it as a "leash". I've never had any type of surgery except having my wisdom teeth cut out. Never been hospitalized and had to deal with attempt after attempt to get a picc (I mean that has to hurt) Until recently I didn't even know what a darn port was! Don't get me wrong I'm so thankful that I have (as my team calls it) "healthy cf" but sometimes I feel like I can't bond with cfers because other than complaining about the hours of treatments I do and when my enzymes get messed up at the pharmacy and i end up going way too much (not fun) I really have nothing to compare.

We have lost so many cfers. I didn't know any of them. I never spoke to them. I've just seen on friends facebook pages. I feel so bad, I cried even. It's just not fair! Even though I didn't know them I almost feel "guilty" for being healthy. But I do know there are cfers out there that are a lot healthier than me and that's awesome! But it's sad I was speaking to one of my family members the other day about how many have lost their battle in the last month or so and she was like "we all have to go sometime" it was almost like she didn't care! I just don't understand I thought she would have a heart for cfers since I'm family and I have it. It really hurt me.

I guess I kinda get a little crazy once every three months when I have to go to clinic. Coughing up junk is not fun. There's no blood or anything, no fever, and I have normal energy level so I guess I won't really know anything until tomorrow, I'll post and let everyone know how it went.

I'm sorry for freaking out on everyone. I guess I don't handle cf as well as most.
Hope everyone is doing well

Not My Week

I'm not really sure where to begin really other than to say I HATE MICE! Ugghhh! I live on my landlords farm in a tiny little trailer (he lives in a nice humongous house somewhere else) we kinda watch over things and make sure no one tries to steal his cows (again) or anything else really. So the rent is pretty cheap, well actually this is all we can afford. Last year we really didn't have any problems (except for trying to find a place for our things) but last year we also had 4 cats. This year however has been a different story. The place isn't in the best of shape but since J is a good carpenter we thought we could improve it and make it livable. A couple months ago we decided to put down hardwood floors, we got into the job and realized about half the floor needed to be replaced, it was rotting. Not only that but an entire wall needed to be torn down and reframed out and everything. In the middle of all this construction we had a bunch of mice come in. We set traps and finally put out some poison under the trailer and no more mice. But all the food I had in the pantry had to be thrown away, since we aren't in the best shape financially this really sucked, but we got through it and restocked our pantry. I thought we were done with this issue but now I think we have an entire colony in our home. I bought plastic totes and put all our food in them so they had nothing to eat so maybe if they starved they would find somewhere else to go... well apparently that's not the case, now they're in our bedroom in our clothes I opened a drawer the other day and a mouse flew out at me... how do they get in there?!?! We've set traps and apparently we either don't know how to set a trap properly or they're some smart little boogers. The food's gone when we check the traps but no mouse! I have some cat's on the way so I'm afraid of putting out more mouse poison but I can NOT live with mice. I've been MIA lately cleaning everything! I've never seen so much mouse poop in my life! I want out of here so bad. I've tried so hard to live here and like this piece of crap. I've bought a new rug, hung tons of pics and everything. I don't mean I have to have a big nice place but i hate it here. Anyone got any advice on the mouse issue?

On top of all this rodent issues my daughter is teething bad! She is so hateful! I looked in her mouth and at first she had 4 of her bigger teeth the ones close the back trying to come in. I thought that was bad but now she has 7 teeth trying to come in at once,4 have broke the skin a little at once. and the rest are swollen and are about to break through at any time. She is so miserable and in the process I'm pulling my hair out.

And I think she wants to be potty trained. She loves her little potty. She likes to sit on it and if I'm ever on my big potty she screams at me unless I put her on her potty too. And she has started squatting when she pees. I took her diaper off of her the other day to get in the bath and instead of her usually peeing while she's walking or just standing there she squatted and peed all over the floor. And I've noticed she's doing this even when she has a diaper on. It's actually cute. But so far she's never peed in the potty when I put her on it. But according to my parents she should be potty trained by now. Apparently I was potty trained at 12months.... I thought this was crazy but... Anyway there is so much goin on right now and I'm sorry I haven't blogged for a while but I didn't have anything to write about. I like writing about good news but I'm really frustrated right now.

My lungs are so so. I'm coughing up more crap and the tightness is gone yay there. I guess I don't really know what's going on. I'll know more though soon my clinic appt is the 14th I think so I'm hoping for good news. But my sinuses are buggin me. I think I have a little polyp in there. I've never had this problem but I'm worried. I've never had to have a sinus surgery but I hear they're rough. Maybe I'm a wuss but I'm a little scared that's what they're gonna want to do. I'm breathing good, don't seem to be blocked but when the heat comes on at my place my sinus are so dry, and it doesn't help that I continually forget to turn the humidifier on.

And in other news I CANT sleep! I'm just so hyped up. I don't know why? I've never had that problem in my life. I love sleep. I'm not on prednisone or anything. I've never been on it actually. But I was wondering if inhaled steroids can do the same thing. I used to be on Advair 250/50 but when I was pregnant and my asthma was worse they moved me to 500/50 it worked good and I had no problems with it. Since I just now started fitting my advair in since I gave birth to Lil maybe the 500 is too much. I keep forgetting to tell them to switch it back but my clinic visits usually go like this... you're doing good... everything looks good, ok we'll make no changes. See you in 3 months. The only reason I was told at my last clinic visit to do nebs once a day was that I told them that's what I was already doing anyway.

I don't know what's goin on. Well I hope everyone's doing great!

Flashback Friday

Welcome to Flashback Friday! The idea is to post about anything in your past. Put up pictures of yourself in embarrassingly dated clothing. Tell the story of something that has happened. The arena is wide open. Choose any medium you wish, but focus on some element of your past that you wish to share.



Because I'm too lazy to plug my scanner back in.... here are some pics from a little over a year ago.

This is me my mom and Lily. It was taken 5 1/2 weeks after giving birth, and I was back in my size 5 jeans! I wish I could say I'm still that small but I'm no where near a 5... damn birth control lol.... lost all the baby weight and then got fat again, but without a cute little belly this time.


She was just so little and cute (still is)


She had the tiniest, cutest little tootsies :)


I miss her being so little, and she just grew so fast!


I miss having an infant in the house, but I'm just happy that she's healthy and growing like she's supposed to.


♥♥♥I love this little girl♥♥♥

Wordless Wednesday

So... I've been shopping... Lily on my new bedding.



And... my new cf awareness bracelet :)





Not entirely "Wordless" but it's wednesday!

God Bless

Vesting

Isn't this just too cute... Lily has to sit in my lap while I do treatments (and sometimes she takes my nebs away lol) but when it comes time to vest she sits and waits "patiently" (haha whatever) on me lol.

I don't know if I'm sick or not. My lungs feel tight, but I have tons of energy, no fever, coughing up no blood, in fact I'm hardly coughing up anything and it's really light like white (tmi) which is lighter than usual so idk what's goin on. Thankfully it's Tobi time (I'm so thankful for Tobi) so hopefully if there is something goin on down there it will take care of it. But I have noticed a lot of my cf friends are sick so maybe I am too... idk

God Bless everyone, love you guys

This crazy, hectic life

I know it's been foreverish since my last post :( I meant to post Wordless Wednesday and Flashback Friday for two weeks but never got around to it. And I actually found some baby pictures of me.

Me and my husband have been going through a rough patch for quite a while now and last week things just kind of exploded. And on top of that Lily has turned into quite the terror. I started to post a couple of times but I was just so angry and then depressed, I really didn't want to bring all that drama to my blog, but things have gotten semi better so I'm back. But I have been reading all your posts :)

Lily is now 14 months as of the 5th. She's developing quite the little attitude and completely attached to my hip. I have to do everything because she wants NOTHING to do with J, can't say as I blame her really (I know that's pretty mean but he's become the pure devil lately, not that he wasn't always grumpy). I don't have time to turn around! She's constantly in my lap she screams to be in my lap and if I'm doing anything else I have to pick her up. It's kinda cute because she's constantly hugging and kissing me. But lately that's about all that's cute. If she doesn't get her way (which is quite often, because she's into everything and climbing on everything) she flops around on the floor kicking and screaming, throwing a tantrum. She has refused to sleep in her bed and nobody gets any sleep when she's in the bed and she has fell out on her head for the second time now. IF I can actually get her to take a nap through the day so I can get something done, the second I lay her down she screams I have to hold her the whole time. And on top of that my mother in law has to tell me what I'm raising my daughter all wrong and that I have my daughter spoiled rotten. And it's all my fault! I know I'm gonna miss this someday but I'm pulling my hair out right now.

But she is saying a lot more words now. Her favorite word for now is tickle tickle tickle. It's so cute she'll be looking at a book and say tickle tickle tickle and turn the page and say that for every page. She also said mama and pulled her shirt up the other day and said tickle tickle tickle and I tickled her lol. She loves to be tickled. She's also saying uh huh and uh uh when you ask her if she wants something. But that's only sometimes. And she says "this" and points to everything. It's cute, and she sounds so southern, just like her mama :) lol. She's also got to do everything mama does. I had just gotten done with my nebs the other day and i heard this deep breathing and I turn around and she has my neb holding it just like mommy and breathing in it deep lol. It was cute. If I don't take them and clean them out right away though she grabs em up and starts breathing them lol.

My lungs are pretty good now. Last week they were so tight. I finally started doing my advair like I'm supposed to. It's funny, I've been doing my meds like I'm supposed to, but I ALWAYS forget advair for some reason. But I've forced myself to put it in plain sight right next to my nebs and I've been doing it for a couple days now, and there's a BIG difference. So I'm feeling great.

I hope everyone's doing great

CF health update

I hate this time of year! I mean it's all pretty and everything but it makes me feel all yucky.

I was so excited after my last clinic visit when I was told it was fine to just do my nebs and vest once a day. But now I've bumped myself back up to twice a day on Albuterol nebs and I'm actually getting my vest in at least 20 minutes and sometimes twice when I get my little one to take a nap, it's pretty much impossible to vest when she's awake she takes the hoses out and fights with me for the peddle thingy lol. I also got a little exercise in the other day, and hacked my brains out afterward. I guess I finally realized just how out of shape I am. Before Lily was born I was so active but now I'm lazy and soft :( But I'm feeling so much better now I'm not coughing as much and theres not a lot coming up but what is, is a lot lighter than normal so that's good and I feel great.

My sinus' are better. They've been insane but sinus rinse is a GOD SEND and so is sudafed. My sinus headache is gone YAY.

I'm pretty upset about my enzymes right now. Somehow I got switched from Pancrease 20 to Creon 20. I went to my awesome pharmacy (I love them they always get my meds together on a certain day and I don't have to wait when I come in cause it's always ready) and picked up my meds they had called my docs office for a refill on my enzymes and somehow I ended up with diff enzymes. I thought it would be the same because it's the same thing just a different brand, right? I was so wrong my poor tummy has been cramping me to death, I'm all bloated and well lets just say things aren't too pretty. I need to see if I can get them switched back but I haven't really left the house out of fear of catching H1N1 and bringing it in on Lily.

I still haven't been able to get our vaccinations. My awesome bud from the health department said she would stick one back with my name on it when they get them in but they haven't gotten anymore. I hope to get it soon though.

As for my weight loss attempt I have lost down to 146 that's 5 pounds so I guess I'm 1/4 of the way there. I'm trying to go about it healthy and smart. Last time I freaked about my weight I was stupid and went of this crazy diet where I only ate like one time a day and it was pretty much nothing. I lost way more weight then I meant to and I got so sick. I was shooting for 120 (I feel like a twig at 120 as well) and ended up at 116 and I felt like a stick and could not breathe. My pfts dropped like 40% and it's only by the grace of God that I didn't stay there that I was able to pull myself out of that. I'm healthy now and I wanna stay there even if that means I have to keep this huge butt on me.

I've decided to try to get myself back in top shape. I'm doing treatments religiously and I'm gonna try to workout at the very least 3 times a week. I was at 90% before my pregnancy in 08 since then life as a mother is different and i have had no time for me, but since my daughter is bigger now some things are now easier so I have refused to accept 80 as my new baseline. I was at 80 with one treatment and no exercise at all so I'm hoping to try and get back to 90 if I'm not there in December at my next clinic visit I will accept it and I guess I'll just work hard to keep myself there.

I need to live a long time and take care of my baby girl. The first clinic visit after I gave birth to Lily I was all depressed (maybe it's because I had postpartum deppression) and said I wouldn't live to see my baby graduate high school because cf is death sentence and I'd be lucky to live to the 37 years that most cfers live to. I know this doctor felt bad for me and I'm sure he didn't actually mean it but he said "you could live to be 80 it's up to you and cf doesn't have to dictate your life". He also told me I was doing better than 90% of his patients. At the time this went in one ear and out the other. But in the past months after I got semi back to myself again I realized he was right. I don't have to die young. Yes cf is here and makes life challenging and maybe I won't live to 80 but I realized cf sucks yes, but my God is way bigger than cf. It's up to him and not some dumb mutation when and where my life will end. Yes taking care of myself makes life easier and keeping these lungs healthy keeps me from waiting for a transplant but ultimately my life is in GOD's hands. So I'm shooting for 80 years, some of you may think I'm absolutely crazy for saying that since I have a terminal illness but have a little faith people. Besides I know a 60 year old that lives here that has cf. It's true he's had it pretty mild he was diagnosed in his 40's! But that gives me hope that 37 isn't the longest I can possibly hope to live. So I'm taking care of me and my family and trusting God.

This post is WAY longer than I meant for it to be. I just meant to complain about my enzymes and it went somewhere completely different. I have so much to say I just have a hard time getting it out there lol

Well I hope everyone is doing great.
God Bless

Misha and Lil