Wednesday, November 17, 2010


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!

Monday, September 13, 2010

Clinic Update

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.....

Friday, September 10, 2010

My Little One Is 2

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)

Friday, August 13, 2010

It's Been Awhile......

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.

Tuesday, April 13, 2010

Monday, April 5, 2010

Unexpected Bliss

Is having a giveaway!!!! Go to

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

The giveaway is opened until Tuesday!

Friday, April 2, 2010

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.

I was going through old pictures earlier deciding what to post, and I realized something my parents took a lot of pictures of us at Easter. And since Sunday is Easter I thought I would share a few of my Easters through the years....

Me and my little sister.... not sure the year but A LONG time ago. My mother always loved to curl my hair, and they called my Curly Sue ( my middle name's Sue).

I was around 5 or 6 here , and that's my mom (isn't she so pretty) and my little sister again

This was after I had my hair permed... but it kept falling straight... I think it may have been the meds I was on...

Me and my sis and my daddy. And since every year we kept losing all our eggs in those dinky baskets from Walmart, mommy made these for us... they lasted a Looonnnnggg time lol

Wednesday, March 31, 2010

Almost Wordless Wednesday

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!

Monday, March 29, 2010

Not Me Monday

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

Sunday, March 28, 2010


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.


Friday, March 26, 2010

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.

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


Wednesday, March 10, 2010

Sunday, January 31, 2010


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.....

Friday, January 22, 2010

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.

My mom finally brought me some new pictures from when I was little... and of course there was no date on any of them... so I can't say what year it was but I was around 5 and it was Christmas. I had wanted a pink barbie corvette power wheels all year and I woke up Christmas morning and there it was!!!! I was so excited but it was too cold to take it outside so mom let me drive it a little in the house and I drove it right down the basement stairs! lol Yeap right on the concrete floor. Amazingly it survived that.I loved my pink corvette and drove my mom crazy making sure she kept the battery charged for me. I had that thing for a long time and I would push my sister in it long after it quit but one night I left it outside and the neighbor boys stole it.... wonder what boys wanted with a pink car... Anyways I can't wait to buy Lily her first little pink car :)
This was me and my sister Christmas morning :)

Sunday, January 10, 2010

Good Little Mama

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 :)

Thursday, January 7, 2010


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