Cf Motherhood

ENT

2010-11-17T11:55:00.000-08:00

Ya know I wish I could say that my sinuses were all fixed up and I'm feeling great... especially since in my last post over 2 months ago I was told they were getting me the "next available" appointment to see an ENT, but apparently ENT docs are very busy people!

I finally got in to see the the ENT November 4th! After looking at my ct scan the first thing he said was "I'm gonna cut the bullcrap, your sinuses are $h!t!" (haha yeah and the first thing J could say was "I like this guy") But then he proceeded to let on like it wasn't really that bad. Apparently I'm in the 30% of people that do not have sinuses in their forehead. Which is great news! I always wondered why my forehead never hurt when I had a sinus infection (not complaining). Also my sinuses right behind my eyes look completely clear so he won't have to mess around back there (because there is a slight risk of having vision problems after). But my sinuses in my cheeks look pretty bad. He said it didn't look like there was much puss in there, they're just swollen (he said I had a mild infection) so he doesn't think he needs to go in and medicate them everyday.
If it was up to him I would come in that day, have the procedure, and leave. But since I have cf and my clinic usually wants their cfers to do a course of IV's I will be admitted to the hospital November 29th get blasted with some IV antibiotics and have the surgery on the 1st. Probably leave that day or the day after and finish my 2 weeks of IVs at home.

The part that worry's me is that he mentioned breaking 2 little bones that I "probably won't feel" then put the plastic tubey things in. I'm not too hip on having bones in my nose broke... or any bones for that matter. Also I get to see alot of him. I have to go back a week after, then 2 weeks, then a month, and "eventually" I can schedule visits along with my cf appointments. I live a long way away from Lexington so I'm not looking forward to running back and forth so much. I mean gas pretty freaking expensive and I NEED Christmas money as it is.

Honestly though I can't believe I will have had to wait 3 months for a sinus surgery!

Clinic Update

2010-09-13T17:37:00.000-07:00

I'm so happy we finally have a plan!

I have felt like crap since February, been on oral antibiotics 3 times (my usual is once every year to 18 months). I've had a horrible sinus infection and on top of all that I had to catch J's stupid cold! So I really didn't have high hopes for this visit. In fact I was terrified (ugh blood pressure was 160/101). My cough sounds like a mix between a duck honking and a dog barking! So I just knew what was coming....

First of all I got to see Dr. Kanga today!!! I haven't seen him in ages he was my pediatric doctor. I miss him so much!

Anyway....PFTs were down a smidge to 77% now I am not in the least bit happy about this but the docs considered them "stable" since last time they were 78 and one point really isn't much difference, especially since my lungs sound clear. I am not happy because my numbers were 82 then 79 then 77 then 78 and now 77. I don't like being outside of the 80s, heck I don't like being under 90!

Next thing they told me, my ct scan looks horrible... big shocker there! They were actually surprised that my lungs weren't affected more because my sinuses were so bad. I guess that's probably because I've been working my @$$ off. Doing extra treatments, vesting 30 minutes at a time instead of 20 and sometimes 3 times a day, asked J to "beat me" many times and upped my hypertonic saline to twice a day (although my doc told me I didn't "need" it more than once) And not to mention my time on the eliptical.

So I'm being referred to ENT for a sinus surgery. I will come in to the hospital 2 days before the surgery and start IV antibiotics then I will have the surgery and stay 5 more days while the ENT doc cleans and medicates my sinuses every day then I will go home and do another week of IVs.

I'm a little worried about the pain involved but I have to say I'm excited. Because one this is just for my sinuses and not my lungs, they think my lungs are fine (I disagree because my oxygen sats were 95 and they're usually 98 to 100 so that's low for me but apparently it's still normal...) just issues from all the drainage. Two I'm finally going to feel better. And the big one I'm waiting to see what this does for my lungs. I'm getting the big guns finally. I remember what it was like the first time I did Cipro my pfts skyrocketed past baseline. So maybe this is the oomph I need to help me continue raising my pfts to where they need to be. Although the huge PICC thing still scares me to death. I've known for the past 7 or 8 months that I needed IVs and the fact that my fvc is so far away from my fev1 worries me (fvc=102). I'm just looking forward to getting this over with, kicking some pseudomonas butt and getting on with my life... I have plans y'all and I don't really enjoy cf dropping by when I'm busy trying to make those plans happen!

Anyway I got new asthma meds which is great cause asmanex sucks. They gave me like 3 months worth of symbicort samples to try. I've heard great things about this one so I'm really looking forward to not having my rescue inhaler attached to me at all times! Oh and my last labs showed I was a little low on vitamin d so there's another pill to add lol.

I think that's about it for clinic. I still can't believe I'm taking having my very first IV antibiotics ever so well.....

My Little One Is 2

2010-09-10T20:27:00.000-07:00

Last Sunday my baby girl turned 2 years old. We celebrated with a party at our house, nothing big but she still had a lot of fun and got plenty of stuff.

(My princess on her birthday)

Isn't she just so beautiful

She was loving her new wagon. Well her and her cousin both were. They screamed if you stopped pulling them around lol

This is what we got her. She loved it. When she got on it in the house she ran into a wall and then another wall lol.

And I love this pic of my baby sister. She looks so cute pregnant :) She's about to pop with her second one (I'm a little jealous)

It's Been Awhile......

2010-08-13T20:47:00.000-07:00

I have meant to write this blog for months now, there's just been too much going on. For months I had been in a constant state of depression, cf wasn't behaving, and well lots of other issues that I don't really feel comfortable discussing on my blog.

As long as I am being halfway compliant with my meds I don't get sick and need antibiotics (or if I catch a cold). I usually get sick once every year to a year and a half and Cipro has always taken care of it. But so far in 2010 I have been on antibiotics 3 times from February to June! Which is a lot for me! I was completely compliant each time I got sick. So with everything else that's going on and cf making me feel helpless I've been a total wreck. This last time I was on Avelox and I could actually tell a difference, but maybe not enough that I feel great!

But my sinus' are infected and a mess and they don't seem to be getting any better and i'm pretty sure that's what is infecting my lungs. I have a ct scan scheduled for the 13th of next month (which is my first one ever). Honestly I feel like I'm long overdue for a surgery and some IVs. That's really hard for me to think about because I've never Had to have IVs and I guess I feel like that would mean that I'm getting worse and makes me wonder would it be that I'd have to start going to the hospital all the time? I guess if I had grown up going in from time to time I'd be used to it and it wouldn't be a big deal. But i've spent 24 years healthy and never really had any issues as long as I took care of myself.

Because of everything that's going on and me worried about my health I have started having anxiety attacks. I had no idea what was wrong with me but all I could think was I was suffocating. I thought it was my cf... who knew your mind could cause something like that? It just so happened that clinic called me back in the middle of one of these anxiety attacks and I think they thought I was crazy because for the next few days afterwards someone from clinic called me everyday to see if everything was ok and if I needed to talk about it.

And here's another thing........ this is one of the things I've been stressing about.... It's really hard for me because I don't want to seem greedy, but I want another baby!!!! I know I have a healthy baby girl and a lot of cfers Never get that, and I know I should be happy but I can't help it! I see her playing alone and I keep thinking that I don't want her to be alone. I want her to have someone, I mean I can't live forever (obviously) And maybe I want another one for myself too.

In fact I apparently wanted one so bad that I went through a phantom pregnancy for 4 whole months!!! I felt something kicking me all the time. I know that sounds crazy and it had to be gas but I had never felt gas like that, and it was just like when Lily was in my belly. I mean I could see my tummy move. But it wasn't just that. I had a few other pregnancy symptoms including leaky nipples, yeah it was weird. I had like 20 negative pregnancy tests but I couldn't convince myself. Luckily I didn't tell that many people (because I knew at the time I was losing my mind). I kept reasoning with myself and then I'd have the symptoms again and I would go back into this state of knowing it wasn't possible but couldn't stop believing it.

I know I sound completely nuts right now but I'm pretty sure it had something to do with the birth control I was on (Mirena IUD). I met other women on some health forums with the mirena and having the same "movements" and all the other symptoms and they had negative tests as well. I swear from the minute I got the Mirena, I just didn't feel "right". I had all kinds of "wonderful symptoms" that I won't go into on here but one in particular was it made me crazy. I was an emotional wreck.

Oh or the fact that I gained 30 pounds on top of my healthy weight! I'm 160 pounds right now! I know being a cfer I should be happy with weight gain but I would've been ok with 10 pounds but 30 is freaking crazy. And it doesn't help my stupid cf lungs have to carry all this extra weight around! I feel like a cow and well feeling disgusting doesn't really help this whole depression thing either..... Especially when my doctor tells me he doesn't "necessarily" want me to lose any but to not gain anymore and I needed to get into shape and gain more muscle. He was actually really nice about it, I mean it's not something I didn't already know. I just never thought I'd hear a doc say that to a cfer. The weird thing is I'm not all super hungry like i used to be and I don't eat that much.

So if any of you Cfers out there know any "healthy" diets let me know! Because I want to be smart and not get sick.

Easter

2010-04-13T08:03:00.001-07:00

Unexpected Bliss

2010-04-05T09:31:00.000-07:00

Is having a giveaway!!!! Go to

http://www.unexpectedbliss.com/2010/04/01/trying-to-give-back/

They're giving away an awesome Nikon D40!!!!

The giveaway is opened until Tuesday!

Flashback Friday

2010-04-02T19:01:00.000-07:00

Almost Wordless Wednesday

2010-03-31T20:31:00.001-07:00

A couple of weeks ago Lily got to spend the day with some of her cousins... she had a blast, and of course I had fun taking pictures lol. We went for a long walk (got me some exercise) and it was just so pretty!

Not Me Monday

2010-03-29T08:27:00.000-07:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

So... I usually don't do "Not Me Monday" but this one was just too funny not to....

So yesterday when my daughter had went number 2 in her diaper, and ran to my husband saying "uh oh, uh oh". He was not so engrossed in his cell phone conversation that he wasn't entirely paying attention while he changed her poopy bottom.

He did not walk away to the kitchen afterward to finish his phone conversation "in peace"

And a few minutes later Lily did NOT come through the house with something in her hand yelling "uh oh, dada, uh oh".

When looking to see what it was she was trying to hand him my husband did not see that it was a little turd that had rolled out of her diaper lol.

Of course not, my husband would never do that lol

Update

2010-03-28T14:28:00.000-07:00

So I guess everyone probably thought I was dead or have been in the hospital for a month or two, since that's how long it's been since I last posted... well I mean something but pictures. Especially since I was sick in my last actual post. I'm better now though (for the most part).

After my last post I called my clinic, I felt so crappy I really didn't care if I ended up in the hospital as long as I felt better. They were gonna call in some Levaquin (I was excited about that because like the one time my bugs were completely killed that's what I was on... I've only been on that like once maybe twice) but apparently my insurance wouldn't cover it, so I got cipro instead. And since it seemed to be more asthma-ish I asked for some prednisone... I had never been on it before but I had heard great things about it. I was given 20 mg twice a day for 2 days and then 20 mg once a day for 2 days and then 10 mg for 2 days. The first day I took it I felt AMAZING like I could run for miles and I sorta thought my heart was gonna explode, maybe because I was drinking Vault lol (oops...). I can't say that I'm 100% but mainly because my allergies are crazy right now. My sinuses are draining in my sleep and I wake up feeling like poo in the morning until I get everything coughed out (yucky) but I'm good after that.

My tummy issues have been relieved and I'm "regular" again lol. But for some reason my tummy still seems big to me. So I don't know what's going on there. But maybe it's cause I've gained another 5 lbs!!! I am not happy about that. My double chins starting to grow ANOTHER double chin! lol But I'm going in April to have my Mirena taken out so hopefully I can lose some weight finally. I was 126 before getting it and today I'm 155! I've always been able to gain and lose as much as I want but it seems easier to gain and harder to lose these days.
Another reason I haven't posted in a while is because my daughter turned 18 months and into a terror tot lol. I can't get anything done. She just constantly whines and if she doesn't get her way she literally gets on the floor and throws a tantrum. But she's done some more cute things though... she's not always a little monster lol
Hope everyone's well.

Misha

Flashback Friday

2010-03-26T19:59:00.000-07:00

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.

Recently my sister brought me a huge plastic tub full of Angela's (my other older sister) pictures (and memories).... like ALL her pictures. Trust me there's a bunch. And anyway I was given the task to scan them all in and put them on a disk. So that's kinda why I've been a little MIA lately. Anyway I thought I would share a few with ya'll.
This is my older sister Angela and her 1 year old daughter in about 2000. Isn't she beautiful!

I've been a little sad lately... going through all these pictures makes me remember her and think about her... or the person she once was... (Angela and her daughter Justice at her first birthday party)

Angela was always one of those people that everyone just liked right off the bat. She was crazy and kind of a wild child. But I loved her (still do) She was one of those people that "NEVER" met a stranger, she would talk your ear off. And although she wanted everyone to think she was a bad ass, she was one of the sweetest people you would ever meet. I don't think I ever had an argument with her. I think she was trying to hide the hurt little girl inside. Her biological mother left her when she was a little girl with my father (she's my half sister)
She was such a smart girl and always made straight A's. She had a 4.0 in college and actually after everything happened her college professor called my dad up and told him that he had never seen anyone so smart and was actually a math tutor in college. Of course this was all because all Angela wanted to do was make daddy proud ( I did too but I think that's an impossible task)(my little sister Gracie, Justice, Angela, my older half sister Glynna, Me and my mommy)

Although Angela was super smart, she had one problem. A big problem... she liked to party. Mostly alcohol....
(In the bahamas)

September 16 2001, just days after the terrorist attacks (when I knew the world was gonna end just any minute) I was awakened at midnight to my parents telling me to get my clothes on that we needed to go. Since my father was a police officer at the time and knew all the dispatchers personally they called us only moments after it was called in. Angela and two other friends had been in a serious wreck and she had been thrown from the vehicle as it flipped through a field. We arrived only moments after she got to the ER. She was unresponsive. I walked right in, I saw everything and for a moment time stood still. This wasn't real. I had to be dreaming....

Later, after she was flown to UK we found out she had severe brain damage, because when she was thrown from the car she landed on her head, the doctors were amazed she was still alive. The damage to her brain was causing her legs to draw up. Amazingly though she had no other injuries to her body just her brain. She wasn't expected to make it, but if she did we were told she would never be the same. She would have the mind of a baby at best.

That was 9 years ago. And she is still in the same condition. She has a feeding tube because she can't eat on her own. She wears a diaper because she can't get up to use the bathroom on her own. She can't talk, and she doesn't know me when she looks right at me.
Everyone always asks me why I hate alcohol, and why I'm so hardcore against it. The night I walked in the ER and saw all the people working to keep my sister alive. I vowed to NEVER take a drink of alcohol. And I never will and never have. Some people call me crazy and yes I realize Angela made a decision to get in the vehicle with people that had all been drinking heavily. But to me, drugs and alcohol took my sister from me. And took her away from her 3 very small children.
I have to admit I haven't seen my sister in years. In my mind it's easier to think that she's dead then to see her laying in a bed. Hooked to a feeding tube and wearing diapers. She can't talk, she doesn't know enough to talk. She doesn't know me. From the brain spasms her hands and feet have drawn up. It's hard to see her that way, that's not Angela laying there my mind keeps telling me. All these years I had let myself forget about her, because I just didn't want to deal with the reality, but these past few weeks going through her photos, the memories just flooded back. I have thought so many times... what would life be like today for all of us if she hadn't been in that wreck? Would I have somehow found myself partying, perhaps with her? Did this change my life? I also think of all the fun memories we would have made, just hanging out and shopping. She was such a go getter and always included me and my younger sister in everything. I really miss her....

I know I haven't posted an actual post in a loooonnnng time. But you can expect an update in the next couple of days.... Hope everyone is well

Misha

Wordless Wednesday

2010-03-10T06:24:00.001-08:00

Sick

2010-01-31T18:16:00.001-08:00

It's been sooooo long since I've really been sick. The last time was right after Lily was born, and I took Cipro and was good as new in no time. Anyway I'm sick and sooooo miserable right now. Cf decided it would mess with my lungs and my tummy at the same time, ughhh!

It all started like two weeks ago. I was great and being a good little cfer and doin all my nebs and everything and then my asthma started bothering me. I had just done my nebs and laying in bed trying to sleep and gasping for air, I would have killed for an oxygen tank!!! I have had problems like this before, it's usually something to do with my allergies (I must be allergic to EVERYTHING) and since I had run out of zyrtec I just thought it was that. Anyways I was coughing like usual with my treatments but nothing would come up. I guess my lungs just wouldn't open up enough or something. Anyway I finally got some zyrtec and immediately noticed "some" difference. And ever since I've been hacking my brains out! There's a ton of junk coming out and I'm just so short of breath. All I wanna do is sleep and I just start gasping when I do anything. I feel like I have a fever but the thermometer says it's normal. I'm starting Tobi nebs right now. If I'm not better in a few days I'm calling UK. I can't feel like this and take care of a toddler!

Now on to my tummy. I didn't "go" for like a week! My back went numb and tingly! I've been drinking miralax and eating stool softeners like their candy! The only way I can go is to not take my enzymes and take the miralax and docusate. I had the same symptoms when I was pregnant, but since there's a zero chance that I'm pregnant I'm ruling that out. I don't know what's going on with my body but I'm thoroughly miserable.

But on a happier note... there's a small glimmer of hope when it comes to getting out of this crappy trailer.... but the earliest is like Christmas! Uggghhhh my life.....

Flashback Friday

2010-01-22T19:43:00.000-08:00

Good Little Mama

2010-01-10T19:21:00.001-08:00

Lily loves her little cousin Xavier (they're 7 months apart). She was just so excited to see him today, she tried to unbutton his carseat and then she sat down and wanted to hold him lol... even though he's like only a pound lighter than her.

Then she fed him.... more like crammed food in his mouth.

Then she tried to give him his bottle... how cute! She's gonna be such a good little mama.... a Loooooong time from now :)

Live

2010-01-07T18:17:00.000-08:00

Most years I don't make a resolution. Or if I do I never make an effort to follow through on it. I guess I just assume the new year fairy will just point her magic wand at me and I'm magically going to be 10 pounds lighter, or I'll be a better person or whatever my resolution was will happen completely effortlessly on my part, but this is the real world and if you want to change you have to do it all by yourself. Besides the new year is always the same to me just another day. But however this year I did make a resolution. My resolution is just "to Live". No I'm not dying and i just want to make it through another year, I'm alive but I feel dead.

I guess maybe I should go back a little and explain myself.... I used to be the bubbly, ditzy, silly, completely obsessed with my looks, blond. And then my long time wish of becoming a mommy happened and don't get me wrong I'm so happy. Being a mother has brought so much meaning to my life, and I love Lily more than my very own life and would gladly give it up for her. But somewhere along the lines, just like many mothers do, I lost my identity. I no longer feel like a wife, a daughter, a friend, a person really, and most definitely not like Misha. Now before you start thinking I'm horrible... No I don't dump my child off all the time (and neither do I want to) to go party or whatever (in fact I've NEVER partied in my entire life!) What I am trying to get at is this... my entire life revolves around my daughter, in fact I just bought some new makeup for me (the first purchase for me in sooooo long) and I actually felt guilty.

RIght after Lily was born I sunk into a deep deep depression. They said I had postpartum depression but looking back now I think it was just the exhaustion. I literally don't remember the first few months of Lilys life. She was a great baby and slept like 5 hours at a time at night but stupidly I wasn't sleeping when I should have been. I should have slept when she slept but if it was daytime I was awake and holding her/ making sure she was still alive. I couldn't sleep at night for the same reason I would stay awake and checking her every so often making sure she was still breathing, I was terrified of SIDS. Not to mention while I was in the hospital for those 3 days I got not even a wink of sleep because of all the nurses and the respiratory guys that had to give me my treatments and treat me like I hadn't been doing them everyday for mainly my entire life!!! So anwho I was exhausted to the point of falling asleep while feeding and changing Lil. That mixed with breastfeeding, not eating, and absolutely no treatments. I was miserable. I lost the entire 22 pounds in about 6 days and after a week I was under pre pregnancy weight. Trust me people being a mommy to a newborn is the toughest job you'll ever have.

I did pretty well recover from Lils newborness but I honestly can't say that I have really done anything for "me". I hadn't worn makeup pretty much at all and I just don't "feel pretty". Not to mention the 20 pounds I gained after the birth control doesn't help much either. And the whole H1N1 thing left me in the house for months and months on end. Eventually I become afraid to travel out of the house because I've gotten so used to being (goin crazy) in the house. So eventually even after being vaccinated I became afraid of catching something else. All the time that I've been indoors and not doing anything gave me lots and lots of time to think about things, and I began to educate myself on my disease. My thoughts were that I needed to "know my enemy" lol... I mean since cf was technically trying to kill me. So I guess you can say that cf is dictating my life. I'm not super sick but somehow I let it keep me in. I thought by keeping myself and Lil in I was protecting us but the truth is I think I'm about to turn Lily into the social retard that I have become. I don't want her to be the outcast or just weird and friendless. But I mean those wal mart shopping carts are just so germy and all those hacky, germy people....

So in my attempt to keep us healthy and waiting to "live" the world has been going on around us, without us, living. I have read so many horror stories about cf and the truth is no matter how hard I try I "can't" prevent them from happening to me and I'm just becoming this empty shell of a person that is terrified to just live. So my new years resolution is to just live this year. To go shopping when I want, with my daughter. Wear makeup occasionally (I have actually worn it 2 days so far this year lol). To go to a friends house without calling asking first if they're sick and if it's contagious lol. To just get out and let my daughter play without always obsessing over germs. To do something for me every now and again and not feel guilty for it. And just have fun, and be that bubbly person I always used to be.

I hope this new year has been good to everyone so far :) And I hope to have more things to post this year about our adventures and not just about being at home, bored and lonely.

God Bless
Misha and Lily

This is me and Lil and I was actually wearing makeup.... for the first time this year lol

2010-01-03T19:49:00.000-08:00

Christmas 09

2009-12-30T15:04:00.000-08:00

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
Misha

2009-12-29T20:03:00.000-08:00

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!!!!

Oh No!!!

2009-12-21T20:05:00.000-08:00

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 :(

Flashback Friday

2009-12-18T20:01:00.000-08:00

Wordless Wednesday

2009-12-16T17:24:00.001-08:00

Cf clinic

2009-12-14T17:11:00.000-08:00

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
Misha

Freakin Out Here......

2009-12-13T19:11:00.001-08:00

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

2009-12-05T11:58:00.000-08:00

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

2009-11-27T20:18:00.000-08:00

Wordless Wednesday

2009-11-25T07:09:00.001-08:00

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

2009-11-19T10:00:00.000-08:00

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

2009-11-14T19:38:00.000-08:00

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

2009-11-03T11:44:00.000-08:00

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

2009-10-31T20:14:00.000-07:00

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

Flashback Friday

2009-10-30T18:58:00.000-07:00

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 www.jsmerhaut.blogspot.com

Wordless Wednesday :)

2009-10-28T12:18:00.000-07:00

Please Pray

2009-10-27T09:18:00.000-07:00

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
Misha

My CF Pregnancy

2009-10-23T19:43:00.000-07:00

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

Momma's Little Girl / Sleepless Nights

2009-10-18T18:44:00.000-07:00

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!

Misha

My Little Weight Watcher

2009-10-16T09:09:00.001-07:00

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

Love
Misha and Ms Lily

The First Year, introducing my little girl

2009-10-15T17:46:00.000-07:00

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

CF Mommy

2009-10-13T19:48:00.000-07:00

This is my very first post and I have no clue how to start it lol. So maybe I'll tell a little about me and my family.

I'm a Cfer (clearly) I'm also the mother of a beautiful little girl. I'm a stay at home mommy so I guess I get kinda lonely. I'm hoping to connect with other cfers, cf mommys, and just other stay at home mommys. I love taking pictures and as soon as I figure this site out you'll be able to tell cause my page will be covered with pictures of my family (more Lily though :))

Recently I visited my cf clinic and things are pretty good. Everythings is up so my cf team is pretty happy. My fev1 was 80% up from the last visit but not back to the 90% before pregnancy. My fvc was 110%. My weight was up (yeah that's the part that really bugs me) I weigh 151 pounds. My usual weight is around 132 (well before the baby) so I kinda feel like a cow. I'm on a diet though and hoping to lose at least 10 pounds but I'm shooting for 20. It seems though no matter what I do I can't seem to lose :(

I was also told it was fine for me to only do my nebs once a day since I was anyway and my numbers went up.

That's all I got for my first post. I guess getting the first one wrote is probably the hardest.

Love
Misha and Lil