Christmas 09

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

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


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

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

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

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

God Bless
Misha

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!!!

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

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

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



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

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

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

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


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

Wordless Wednesday

Cf clinic

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

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




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

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

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

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

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

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

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

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

Hope all is well
Misha