Wednesday, December 30, 2009

Christmas 09

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

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

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

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

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

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

God Bless

Tuesday, December 29, 2009

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

Monday, December 21, 2009

Oh No!!!

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

Friday, December 18, 2009

Flashback Friday

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

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

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

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

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

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

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

Wednesday, December 16, 2009

Monday, December 14, 2009

Cf clinic

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

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

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

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

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

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

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

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

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

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

Hope all is well

Sunday, December 13, 2009

Freakin Out Here......

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

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

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

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

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

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

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

Saturday, December 5, 2009

Not My Week

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

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

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

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

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

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