Wednesday, December 30, 2009

Christmas 09

Christmas this year was so different then Christmas' past. For some reason, no matter how hard I tried I couldn't get into the Christmas spirit. There was so much going on, and then a few days before Christmas Lily caught a horrible cold, then J caught it and I did too. Well I had it for like 24 hours... I think that was my Christmas miracle because I don't ever really remember a cold that didn't end up in a lung infection and antibiotics. I was just achy and snotty for a day lol. But they STILL have it! Anyway... every year we lite our cinnamon candles and can't wait to put our tree up and decorate. We drive around and look at all the lights and decorations, and we generally watch The Nativity Story like 3 times or I do and listening to Todd Agnews Christmas album is a must. This year however we like to never got the tree up, when we did we had no decorations on it for a long time... because we couldn't find them. We had so many ppl to visit and things to do that I got to watch about half of The Nativity Story and I still don't have my cd back from my friend. Then we went looking for decorations and honestly there were only a handful of ppl that had decorated. Clearly we weren't the only ones that weren't in the Christmas spirit.

Although I feel that I was completely unprepared for Christmas. It was pretty great watching Lily excited about playing with her presents and ripping them open with a little help that is. She got so much stuff! Books, 4 dolls, outfits, shoes, tons of toys...and santa brought her a babydoll stroller... since she takes off with my laundry baskets pushing them across the floor lol.

Here's Lily with one of her many toy sets... along with a lot of boxes and junk from the other stuff that was opened :)Papaw helping Lily open her Cabbage Patch doll... one of the 4 dolls she got!!!!
My sister bought me this cute little angel bear :) Don't mind the face... early morning +no makeup = me looking like a disaster lol.

Lily stealing one of Xavier's toys lol
Here's one of Lily and her present from Santa... not from Christmas Day... because daddy didn't have it put together yet lol

I had had my eye on a new camera for quite a while now. Of course the one that I wanted was over a thousand dollars. So I planned to start saving in 2010 and buy one by the end of the year. I really love photography (never said I was any good at it) especially since I came across a local photographer here and seen some of her work (she has a blog, it's called Angelas blog on my blog list) I just wish I could do that... anyway since I can't afford to take Lily as much as I'd like to have her pictures made I've been doin the best I can with what I have to work with. Then I opened my Christmas present Christmas morning and I had this awesome new camera from J... no it wasn't the big crazy expensive one but as broke as we have been I don't know where he came up with the money for it, because it's still pretty expensive (for us anyway). I'm so in love with it and it takes awesome pictures. So I will be taking lots of pictures, but I still love my little pink kodak I got last year it takes awesome pics too.

All in all I had a pretty great Christmas, even if the excitement leading up to it just wasn't there.
I hope everyone had a great Christmas and has a Happy New Year!

God Bless

Tuesday, December 29, 2009

Taken with my Christmas present :) (plus photoshop) Isn't she adorable. I know I'm such a bad blogger but I promise to post about my this Christmas tomorrow!!!!

Monday, December 21, 2009

Oh No!!!

My little one has a runny nose and all miserable. I don't want her to be sick for Christmas. She'll actually be able to open her presents this year and I want her to be all excited about her toys! I don't want her all miserable :(

Friday, December 18, 2009

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. Chose any medium you wish, but focus on some element of your past that you wish to share.

This was taken in 1990. My daddy, me and my new baby sister Gracie was 1 week old.

Just like any other child I loved to run and play, and I loved to hold my little sisters bottle :) I was just you're average, happy, healthy, normal 4 year old, or so we thought....

Up until I turned 5 I was never sick. I could run and play and i had so much energy. I had never really been sick a day in my life, and I grew faster even than a lot of children do and then.... I "got sick". It was almost like someone flipped a switch. Beca
use the healthy, happy little girl began to lose her energy, developed massive diarrhea, and started getting a cough that no matter what my parents gave me wouldn't stop it. This went on for an entire year. I continued to get sicker and sicker. I coughed every single breath to the point me or no one in my house got any sleep. I went to the doctor every single day in which they kept treating me for asthma and allergies!!! NOTHING helped. Eventually I couldn't walk anymore, I couldn't breathe. My daddy had to carry me everywhere. I stopped eating, because everything went strait through me. I was 6 years old and 32 pounds, skin and bones and an extremely swollen stomach. If you were anywhere close to me you would hear me gasping for air I was so rattly. Pretty much you could hear me before you saw me. Basically I was knocking on deaths door.

Then an amazing person, my fathers friend told his childs d
octor some of my symptoms and he immediately said I had cystic fibrosis. This was in August 1992. My father took me in for a sweat test at this doctors (who is the same doctor that is Lily's pediatrician) office. It's sad I don't remember how sick I was too much but the one thing that sticks out in my mind was the sweat test. It really freakin hurt! They said it wouldn't but trust me I bawled my eyes out.

Here is a picture from March 1992. You can't really tell I was sick here too much. Of course this was right before I was super sick, but in the middle of my illness.

It is amazing how I have progress once I started taking albuterol nebs and CPT and I got those enzymes. And of course the course of antibiotics that I was given. I put on a lot of weight, and since have had no probs keeping it on (so far) and so far I have been relatively healthy for a cfer. Though life with cystic fibrosis isn't what I dreamt of as a little girl I am so very thankful for our family friend who cared enough to ask another doctor and try to help me, and to the doctor who was smart and knew what to test me for. I am so thankful that cf was found when it was. I couldn't have lasted too much longer in the shape that I was in.

Wednesday, December 16, 2009

Monday, December 14, 2009

Cf clinic

So I got some good news and bad new today. I'll go with the bad news first since I'm the only one that considers this bad news... my fev1 has not made it back up to 90% from before pregnancy. For those who don't know me I am a very competitive person. I compete with myself and I like to push myself, and I criticize myself maybe way more than I should. I will have to say that this visit was surprising in a good way considering the nervous wreck I was yesterday... well for the last week actually. I do believe I can get back to 90%. I've went from 50% to 90% before. I don't like to just accept things I like to push myself. My mom likes to say I go from one extreme to the next. Either I go at something way too hard or I give up (which isn't really good). I am over all happy with todays visit but I guess I'm kinda one of those that can always find something to pick out about myself I'd like to change that I'm not happy with. My team thinks 90% can be achieved again :) I myself am shooting for 95% I was a freshmen in high school the last time I was there. I believe with a rigorous exercise plan (like I had back then) paired with the addition of the advair (that I didn't have then) and a few other drugs it can be achieved. Some may call me crazy (that happens alot) but "I" believe.

Anyway for the good news from today, these are my pft results....

This was actually the first time I blew today, they did 3 in all the first was 81 the second 82 and the third 80. They're supposed to take the best one but me and the "new pft lady" were talking so intently that she must have printed the first one by mistake. Anyway that's ok cause it's only 1% off so I won't be "too" mad lol :) But I'm still counting it I blew 82 today! Idk if you can really see the results too well so my fev1 was 2.49 L and 81% my fvc was 3.84 L and 109% that is if I'm reading this thing right lol, but that's what the lady said. I don't know what the other numbers mean but judging by the predicted and my numbers they can't be good. Until I started educating myself here pretty recently I only knew one number that was my lung function number they told me everytime I didn't really know the difference or what an fev1 or fvc was so I'm still learning.

Apparently I freaked for nothing. No antibiotics needed. My sinus looked good, just a little red. I know I keep mentioning the dry air this time of year but it "REALLY" affects me. Before I turned my humidifier on I felt like i was choking! It's like it dried everything up. Like the mucus was still there just drying up like it was turning to cement. I was coughing like crazy because my sinus would drain a little bit into my throat but was so sticky I couldn't get it out! It is amazing how such a relatively small thing can affect us so much!

I do have a theory as to why I freak everytime it's close to clinic time. I believe it's because on a daily basis I do treatments I cough and it's so natural to me that I don't think about it. Life goes on and I guess I ignore it. But when it comes time for clinic to see how I'm doing I start noticing every little cough every everything not to mention stress seems to mess with my asthma and I freak! Of course I'm gonna cough up globs of mucus.... I have cystic fibrosis!!!! But I just seem to notice it when going to see my team.

......Anyway some more good news they called my prescription for pancrease 20, 2 with meals and 1 with snacks back in because of the switch that somehow happened. They said they didn't know how it happened, but they weren't happy about it. My tummy has been so bloated and well I got the same result taking them as I would if I hadn't taken any. I have been so miserable for 2 months now, so I'm so glad to get that changed, because I honestly look like I'm 6 months pregnant lol.

Speaking of pregnancy, that topic came up for discussion (no I'm not preggo and not trying... yet). They seemed supportive of me having another child (of course I didn't consult them the first time lol, they said I was an adult and healthy so it was "my" decision), I think it was mainly because becoming a mommy gave me a renewed confidence in my abilities and has made me try harder, and call me crazy but the hormones made me almost better than before I was pregnant. I mean I seem to get a better result with less effort... I know that I can't live forever and neither can J and I don't want Lily to be alone. I'd like for them to be only a couple to 3 years apart so they could be close. I mean I think that if (God forbid) I do leave this earth young I think she would cope better if she had a sibling to lean on. Most people tend to disagree with me there, that's ok we all have opinions. But since J isn't a carrier that isn't something I'm worried about. But all will happen in God's time and according to His plan. If it's not meant to be for me to have another child then I won't, simple as that.

The doctor also mentioned that he would like me to go back on hypertonic saline. I used to be on them but treatments took so long plus I had issues with the pharmacy so.... He thinks that I'm doing well without it but he wants me to stay that way. I think the docs just really want me to have options though I mean especially when I'm sick HTS helps me through a cold and when I just feel gunkier lol. I usually tend to get really sick with a cold so... I may go back on it eventually but on my Tobi months nebs take ages, maybe I should have mentioned maybe doing it on my off Tobi months. But another good thing that happened today is that I got switched back to 250/50 advair. The 500 was for my asthma during pregnancy. And apparently the extra inhaled steroid won't keep me up at night, maybe it's my extra energy...

I think that was pretty much it, oh except for my weight. It was 151 3 months ago and I was on a diet and lost 8 pounds and I was 150 today... so I've gained pretty much it all back!!! Aarrggg!!!

Sorry this post was so loooooong... but I want to thank all my loyal followers, and the ones who left me comments yesterday when I was freaking out. It really made me feel more (cf)normal and that I had people that care. I do freak EVERY time so be prepared lol

Hope all is well

Sunday, December 13, 2009

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

Saturday, December 5, 2009

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!

Friday, November 27, 2009

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♥♥♥

Wednesday, November 25, 2009

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

Thursday, November 19, 2009


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

Saturday, November 14, 2009

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

Tuesday, November 3, 2009

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

Saturday, October 31, 2009

Well we didn't take Lily trick or treating, it was just so cold and well how much candy does a one year old need lol. So instead we took her to a couple of close friends houses and her grandparents house. She did get some candy and a couple of new outfits lol. I think that's way better than candy. And I got a few adorable pics of her.....

She was trying to steal Erin's trick or treat candy here lol

Friday, October 30, 2009

Flashback Friday

Thank you so much for this idea Juli

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. Chose any medium you wish, but focus on some element of your past that you wish to share.

Since I only found out about Flashback Friday yesterday these are the earliest pics I could scrounge up for the moment. No cute baby pics or anything quite as cute as Julis but hopefully next week....

This picture makes my tummy look fat but I WAS most definitely NOT fat (back then anyway)

The year is 2004 lol. May 19th to be exact. This was the second to the last day of school. There are so many differences between the me then and the me now. The me back in 04 was in love with makeup (dude it took me like 2 hours to get ready) and I didn't go NOWHERE without my ENTIRE face on lol. I was a good 15-20 pounds lighter and thanks to JROTC I was in awesome shape (I worked out everyday)and loved to shop. I spent hours and tons of cash on cute little outfits. I was the perky, ditzy blond. You would seriously think I was the dumbest person you'd ever met. Although back then I didn't believe it, looking back now I used to have a hot bod. This was also around the time I discovered the amazing miracle of tanning beds (spent tons of money on that too) but it looks like I was taking a tanning break here.

The up to date me is SO much different. I'm no longer the ditzy blond (still have my ditzy moments) I dyed my hair brown. I traded the "hot bod" lmao for the mom bod complete with the "belly pooch" (does that thing ever go away i gave birth over a year ago) loads of stretch marks and well plenty of other things I'm not too pleased with. I still love spending money on cute little outfits but instead of a size 3 for me (wish i was still that size) I'm buying size 18months for Lily :) As you can see many things have changed for me in 5 years but I wouldn't trade ANY of it. Motherhood is by far better than any of the meaningless things I have given up :)

This is another picture of me from my last day of school EVER May 20th 2004. Oh how I miss senior year.

To view my awesome friend Juli's Flashback Friday visit her blog at

Wednesday, October 28, 2009

Tuesday, October 27, 2009

Please Pray

My little nephew is in the hospital with pneumonia. He seems to be sick an awful lot and he was born before they started the newborn screen for cystic fibrosis in Ky. So far I'm the only cfer we can find anywhere in my family. We still don't know of any down the line with cf but i guess it's good that I'm the only one. But since my sis is a carrier it's possible he has it as well. I'm prayin that he doesn't, so I'm asking everyone to pray that he's cf free and he get's over this horrible pneumonia.

God Bless

Friday, October 23, 2009

My CF Pregnancy

WARNING... this post may contain a little TMI

I know a lot of cf women are curious about pregnancy and cf. I know I was. I wondered if I could actually get pregnant, if my lungs could make it an entire 9 months since my immune system would be lowered, If my baby would come early, and if my baby would have cf like me. I know this blog kinda goes back a few years but I thought I would share my experience with everyone. Hoping maybe to encourage my fellow cf women. This is my story....

I met my then boyfriend in October 2004. After a few months of dating him I realized I could see myself having children one day with this man, that was when I realized I really loved him. I had never wanted children, maybe because growing up my parents had drilled it in my head that I couldn't have children. After a couple years and much talk of marriage and children and a long and happy future together, I became obsessed with the idea of having a baby. I saw pregnant women everywhere and I HATED them because I so desperately wanted a baby I was like a woman possessed. I began searching the web looking up cf pregnancy. I happened across a girl who was at the time pregnant and she had cf, at that moment I had hope that this could happen for me too.

Me and Jason in 2007

In January 2008 after my period being super late (I'm usually like clockwork) I decided to take a test. Because I was still living at my parents house I went to a friends and took 2 tests they were both positive. After only 3 months we were pregnant! (we weren't trying but not doing anything to prevent it either). We were so happy (he had popped the question on Christmas the month before).

It just worked out that I had a clinic appointment 3 days later. I wasn't expecting the reaction I got from my cf team. I thought I'd be lectured, since they were dead set against me being on birth control a few months earlier. I got a huge stack of papers on cf and pregnancy and was told because I was so healthy I should have a normal healthy pregnancy but if i got sick I couldn't take my usual miracle drug cipro I'd have to be hospitalized. The amazing thing was my pfts jumped to 90% up from 75 three months before ( I had been lazy) I knew right then and there God had his hand on me and everything was gonna be ok.

That night I started reading the pile of info I got on cf pregnancy. I learned that if Jason was a carrier my baby had a 50% chance of being a cfer. I also learned that weight gain during pregnancy was a big concern and so was preterm labor. I knew God was with me but I was suddenly terrified my baby would come early.

On our wedding day

On the 26th of January ( a couple weeks later) we were married

My first OB visit went pretty good. I learned I was 9 weeks and got to see my little one. The ultrasound tech said my baby was about the size of a gummy bear so Jason gave it the nickname of GB. My weight was good 136 and my bp was awesome.

My pregnancy was very uneventful with the exception of having a slightly elevated chance of having a baby with down syndrome and failing my one hour blood glucose test (I passed the 3 hour) and I was anemic. So maybe I had a few problems but most every woman I have met that's been pregnant had these issues and they were easily fixable. At 34 weeks I was "kicked out of high risk" yay! And my OB thought that was awesome.

I was still worried about her coming early so I thought please just let me get to 36 weeks my OB said if I delivered at 36wks there was a 1% chance she'd have any problems. 36 weeks came and went. But I just knew at any moment I was gonna go into labor.

Me at 35 weeks. I loved my belly so I have many belly pics lol

But my due date came and went. It just happened my pregnant cat had her kittens on this day. Two days later I asked about being induced. At this point sleeping was so hard because she was squishing my lungs. They didn't want to at first they'd rather have things happen nauturally. At this point I was dilated 1-2 and could go at anytime and he wanted to wait another week before doing anything. I kinda got mean at this point and decided I was having this baby! They called the doctor on call at the hospital and I was induced. I was hooked up to an IV (the most painful part of the whole thing. That nurse had no idea what she was doing) and given pitocen.

When my contractions Finally started coming the doc came in and said I was at 3 and we should have a baby between 9 and midnight. My contractions seemed to be coming pretty fast compared to what I had read labor was supposed to be like. I was in some pain but I had decided a long time before I was not getting that epidural. The idea of having a needle shoved in my spine was scarier then feeling the pain of labor. But I decided to get the stadol.

After I was given that I don't remember a whole lot. I passed out asleep. I would wake up in horrible pain thinking I had slept a few hours (I had the craziest dreams) but it had only been about a minute. At this point Jason was making fun of the crazy faces I was making and the funny things I was saying (I don't remember this, but he told me about it later. An hour later I was no longer waking up every minute or so with pain. I was wide awake from my contractions that only gave me a few seconds to rest before the next one hit. Around this time I was feeling the urge to push. I thought it can't be I was 3 an hour ago. I was checked again and was at 8! 3 to 8 in an hour! At this point I was told if I didn't get the epidural I wasn't gonna get it. The way my labor was progressing.

Ten minutes later I got my epidural. I thought this was going to be a horribly painful procedure but I didn't feel it. I was having contractions the entire time and that's all I felt. The guy was confused and only gave me a small shot of it. I wasn't feeling any better. They informed him that I was at 8 and needed more. He came back with this huge syringe and I remember my legs going numb almost immediately. No pain nothing. After this I was checked again and was told to give a little push to see if I was ready. Oh yeah I was and I was informed my daughter had a head full of hair.

The doctor came in and two pushes she was out. She aced the apgar thingy lol. And was perfect! 18 3/4 inches and 6lbs 6 1/2oz of healthy baby girl. I was proud of myself. I had done it! The easiest labor that I could have asked for. I was a little bummed though that I had gotten the epidural I wanted to be tough. But I wouldn't change any of it. I was told if I had another I'd better come to the hospital as soon as I knew I was in labor or I'd deliver on the way. My mother always had quick labors she was in labor 5hrs with me and 3 with my sister.

"Hello World" Before she was cleaned up. She was born at 6:54 PM after 4 1/2 hours of labor.

I will have to say having stitches down there sucks when you have cf. Everytime I coughed I thought I was gonna pee on myself from the pain and I can only imagine how painful a c section would be with all the coughing.

All in all I gained 22 pounds (not the 25 I was shooting for) and my pfts dropped the 20% they said they would drop throughout the pregnancy. And for the most part I could breathe great. After Lily was born I noticed I could breathe so awesome I guess I had gotten used to the 20% lung function I had lost and being able to breathe even better was awesome.

I know this was a very long post but I wanted to encourage all cf women to not let cf stand in the way of their dreams of becoming a mother. That God is amazing and to praise HIM for always being with me and giving me the most amazing gift of motherhood.

God Bless
Misha and Lily

Sunday, October 18, 2009

Momma's Little Girl / Sleepless Nights

My little girl is such a mommas girl. It's the cutest thing.... well sometimes, and sometimes it's pretty stressful. For the past week I've been waking up to Lily screaming her head off. Last night in an attempt to let me catch up on my sleep, Jason decided to get her. She screamed even louder from the minute he picked her up. I layed in bed thinking "I'll give it a few more minutes" That's when she starts screaming mama continuously. Then there was a loud "I unt my mama" (translation... I WANT MY MAMA!) At that point I figured if I didn't haul my sleep deprived butt outta the bed No one was gonna get any sleep. Finally after attempt after attempt to get her asleep and back in her bed I realized I had to put her in the bed with me.

Don't get me wrong I have nothing against co sleeping, but I'm what I like to call a violent sleeper, and i think my daughter got that from me too. Let's just say nobody got any sleep last night. I spent the night with a little girl rolling all over my bed and pulling my hair out (she likes to play with my hair to fall asleep but if she has it in her hand after she's asleep she yanks it)

I don't know what I'm gonna do. I don't know if she's scared or what. After all this time I really don't wanna start putting her in the bed with me because nobody really gets any sleep. Not to mention the time I had to take her to the ER when she rolled out, landed on her head and threw up all over.

I know it could be the other way around and she scream when "I" pick her up like she does to J (and I can see it hurts his feelings) but I NEED some sleep!

Anybody got any advice? Help!


Friday, October 16, 2009

My Little Weight Watcher

So... Mommy (me) has been tryin to lose about 20 pounds, pretty frantically apparently. I guess to my daughter I seem to be on the scales all day making sure I haven't gained anymore lol.

Since she thinks she has to be just like mommy... she seems to be on the scales alot too. And the other day I noticed her putting 'teddy' on them and looking like she wanted to see what he weighed (she's just so smart). And she carries them around the house, sometimes I think she's hiding them from me. Aren't kids just so darn cute!

She hasn't quite figured out how to work them yet though.( She don't quite let them zero out yet and it says error.) But if you're curious she weighs 21.4 pounds and is in the 50th percentile and 30 inches long and in the 95th percentile on that. Well as of a week ago when we took her for her well child checkup :)

Hope all is well

Misha and Ms Lily

Thursday, October 15, 2009

The First Year, introducing my little girl

As I sit here writing this I'm so amazed at how fast this passed year has gone by, the year that my daughter has been a part of my life. Well 13 months to be exact. I want to tell everyone about my daughter and all the adorable, crazy, sill and sometimes scary things that she does but since I'm just now beginning to blog about our lives I feel I need to rewind a little and tell everyone about our journey to end up where we are now so....

This was me when I was pregnant with my baby girl. I was like 35 weeks here. I had a normal healthy pregnancy with no complications and the easiest labor and delivery (like 4 1/2 hours) Thank GOD!

This is Lily and me right after she was born. She was so small. Like 6lbs 6 1/2oz and 18 3/4 inches long. She was completely healthy (no cf) and her only problem was an eye that stayed gooey and crusted over... turns out she had a clogged tear duct... no biggie we just had to massage it and put antibiotic drops in it.

The cutest darn thing you've ever seen lol. And so happy, she's always been that way. In her hospital pic she's kinda got a little smile on her face.

This was my little munchkin at 4 months. This was the month she got bronchitis and had to do albuterol nebs. That was stressful. She screamed and bucked and I had to give them to her every 4 hours. I am so glad she doesn't have cf.

6 months. You will come to see I am obsessed with fairys and taking pictures so it only fits that I would dress my cutie pie up like a fairy and take pictures of her lol. This isn't her only fairy pic by the way

Here we are at 9 months. She was just standing up by herself. Not pulling up (she did that before she crawled) this was her popping herself up from sitting down. It was the funniest thing to watch. If only I had video of it. Oh well...

Here she is with papaw at 11 months. She was walking at 10 months but I didn't have any good pics of it. So here she is on the move.

....And finally this is my little darling today at 13 months. It's untelling what that is that she's got on my couch there lol. But I have found that that is only one of the many 'perks' lmao of motherhood. I don't think my house has been completely clean from the moment she was born. But I guess that's something you sacrifice for the wonderful, beautiful gift of motherhood.

I hope you enjoyed the pictures. Well I'm off to read some blogs and send some comments

Love Misha and Lil