I suck as a blogger

So this is it in a nutshell..... I suck as a blogger.

When I started this I had every intention of writing about my life, the good, the bad, the stuff nobody really wants to hear about, but alas, I am not so great with keeping up on it, am I?

There have been so many things that have happened, another hospital stay, a new nephew, a new shool year, and a new puppy. Things that seem so small, yet when weaved into the fabric of you they make life. I guess that's where I've been, I have been living.

I am going to try to do better. Update, even though I have nothing to say. I really want to tell my story, even if there's no one listening. I will do it for me, just another weave in the fabric of my life.

Just an update

Well, I went to the Dr. on Monday, and just as I thought..... my PFT's are down, and my lungs still sound as though a mack truck is trying to make it's way through them without the use of it's headlights. My ribs are still achey from coughing so much and I'm still, overall, feeling very un-Laura like. The Dr. said that there are some options that we have to try to get the PA to relax for a while. The first and most promising proposal is to get me on inhaled Azli (Caystyn), second option put me on Colistin, since I've never been on it (weird, I know), third option is to stick me back in the hospital and try to desensitize me to Cipro again. They took some more sputum samples and so now I'm just waiting to hear back from my doc to see which option the team (ie- him, the denver people, and the infectious disease docs) choose. Don't get me wrong.... I am still actually very healthy. My PFT's are still "good" even if I feel that they aren't. If it wasn't for the resistance my body has built I'd just chalk this up as another tune up. But when the Dr. says that if they put me back on IV's with my resistance before I really really need them we'll be in big trouble...... it's a little unsettleing.

This has been a real wake up call for me.... I've never not gotten better before. It really makes me think that I should just live and be free and happy. Stop taking things for granted. Tell people you love them, make sure they know. I don't know, jump in puddles, dance in the rain, go to that once in a lifetime concert. Kiss your babies, give them hugs instead of scoldings, do finger paints with them.....even though they are messy. Kiss your husband goodnight, everynight. Tell your parent's you appreciate everything they have done. Let those friends that you love and that carry you from time to time know how much it means to you.

Ok.... that sounds more morbid than I really wanted it to....... I'm just feeling like there are more important things in this world than I thought. Mainly those things are my family and friends. When I think about what it is that makes me happiest, I think about my daughter's eyes...... not my Ipod. So to everyone who cares enough to read this, thank you. Thank you for caring. Thank you for listening. Thank you for being you.

Going to the doc again tomorrow

So, I've been out for a week as of tomorrow, and I'm doing pretty good :) My head feels soooo much better, now if my lungs would just follow suit... I still have the rumbles, and the constant cough that has pulled all the muscles across my ribcage (ouch) I don't think it's as bad as it was while I was still in the hossy...... just unusual that it hasn't gone away yet... and annoying. I go back in tomorrow to have PFT's done, and to see the doc, so i guess I'll know more then. I know they threw around trying to desensitze me to Cipro again, but idk.. Right now, I'm just enjoying being free, and catching up on all my shows that are dvr'd..... I have to say it's really hard to watch the tv in the hospital with everyone coming in and trying to talk to you... doing treatments, and so on and so forth ~lol~

Had a little excitement at my house yesterday when my sink backed up to high heaven, and nothing (no really, nothing) would get it to unclog..... It turned out being a very dirty, horrible, 9 hour job that included replacing most of the pipes underneath our house. Thank god for husbands, and Mother-in-laws that are able to do that sort of thing. I really would not have wanted to pay a plumber to do it ~lol~ It also kinda makes me wish we would have bought new, instead of finding a house with "charm" (JK). But really, my hubby said that there was about 20 years worth of grime in our pipes and they were SOLID..... it also didn't help that the last owners of our house thought that it would be a good idea or rinse their grouting tools into the sink (who does that?) Anyways, all is well now. I have full use of my kitchen again, which is nice considering I had some chicken that really really needed to be cooked ~lol~ It smells wonderful BTW. I threw it in the slowcooker this morning, and I can't wait to try it :) Here's the recipe..... just in case anyone wants it :)

http://allrecipes.com/Recipe/Easy-Spicy-Thai-Slow-Cooker-Chicken/Detail.aspx

Anyway, I'm off. Chat with you all soon!! xoxo

wow

I just have to say that I just went back and read what i wrote after surgery, and I have to say, I'm a little more entertaining on a pain pump ~lol~ Just saying...........

omg...

Ok.... so i'm finally out of the hospital. It seems like forever. It was kinda a rough go this time. i was in alot of pain after the surgery, and then my lungs started acting up again. I also started in with this anxiety/ depression issue thing going on???? Who knows about that??? Anyways... They put me on some more anti's for my lungs, but I still sounded horrible, and my lungs just hurt. I was on Doribax for almost the whole time I was there, and that was after  the other course of cefipime that I had before that, plus the week or so of doribax before that. Well yesterday they came in and said my sensitivities came back as my PA being resistant to almost everything, except Cipro, which I'm allergic to, so they were going to send me home sans anti's and hope that the PA changes....or becomes less resistant or something..... My brain just hurts from all of it, and then trying to explain it to me while still on pain meds didn't work out too well ~lol~ So long story short..... I'm home with clean sinuses, but crappy lungs. My head is feeling much better just some surgical pain left over, but not too bad.

My Hubby and I went out for a late Valentines Day dinner last night to the Windmill (a really good steakhouse here) amd tonight we are celebrating his birthday since both of those events happened while I was in the hospital. It's great to be back in my own house and sleeping in my own bed. Now that I'm back, I'm sure the anxiety thing will get better just for the simple fact that I can actually sleep and get the much needed rest my body needs to heal. Well I'm off to finish my hubby's dinner, so i'll have to check back in later....... Sorry it's been so long. Chat with you all soon.

I got a brand new shiney (red) head tube!!!!

So This is it.... my rudolph horn. I came in for surgery on thurs the 28th around 8 in the morning, and was wheeled back to surgery around 10. The prcedure itself took about four hours to do, and the Dr said that my frontal sinus was very scarred, but the infection didn't look so bad. he does believe that the scarring could be causing my problems with headaches since it is tougher tissue and it's tight in there already. The combination of smaller cavities with even the slightest flare of infection could cause some doozies (not really his words). He also cleaned out my maxilary and sphenoid sinuses while he was in there. In both thos sets on sinuses he found large pockets of infection, so with those being cleaned up I should be doing better.

The day of the surgey started out rough.....really rough. We had to be to the hospital by 8, which means I really didn't have to get up too much earlier than usual, but it felt like I did. My parents had come into town on Tues so they could be here to help out with Alyssa. and just ,make sure things were going ok. Back to Thurs morning.... you know the spcheel nothing to eat or drink after midnight except some sips of water to help with pills you have to take. I woke up with a massive headache that day to start out, went out to thr kitchen and took my blood sugar, and it was low..... wouldn't you  know it. So I cheated, I had a little clear juice just to get my sugar up, and I figured hey, I can take my pills at the same time :) SO took my pills with juice and went about my merry way of trying to figure how the hell I was going to shower with my cad pump on. Ended uo taking a bath, but not before I threw all the juice and pill I had just taken up. Ewwwwww. Alyssa also happened to walk in at the most inoppertune moment and scared herself and her daddy by screaming "daddy!!!!! There's something wrong with mommy!!!!! She won't stop puking!!!!" With this she closed to door and went to find solice in daddy's arms (i'm assuming) probably also to beg the use of his toilet.

Once my little escapade was over, I climbed in the bath tub and got ready to leave.

The day before we had talk with Alyssa sbout whether she would like to go to school while I was in surgey, or if she wanted to come down and wait at the hospital with us, even though we knew we were prob gonna be there all day. The prospect of her going to school while she didn't know what was going on with mommy, was very scary for her, and she became quite weepy, so we decided to let her come with us. It wouldn't be that bad and my mom and dad were there. My lovely niece Kareena aslo drove in from Bozeman to keep me company. My husband said that he was very impressed with Alyssa's behavior while I was back. I guess they had a fire drill during the surgey time, you know, when all the doors shut and the bells start dinging. Well, Wes and my parents were sitting in the surgery waiting area (along with probably about fifty other people), and Kareena and Alyssa were in the hallway looking at the trout pond below them when this happened. Alyssa did an about face and marched right into that waiting room, and with her best stern little 5 year old voice she could muster she said "Daddy....... what did you do???" he said nothing lis, it's just the alarm, to which she replied "Now come on Dad, don't lie, I know you did something" complete with arms crossed and foot tapping. Wes said that gave the waiting room something to snicker about for at least 5 mins. Not too long after this escapade the Dr came into the room to let my family know how I was doing, well the consult rooms are built for maybe 3 people, but def not 6, so Wes went back and with her insistance Alyssa did too. Wes said he was worried that she'd mess around and not sit still so he wouldn't be able to hear the Dr, but she sat in rapture as the Dr explained what happened and what he found. Wes said he was extrememly proud of her, and the cutest thing of all..... when the Dr was shaking hands with Wes to leave the room he bent down to shake Alyssa's hand as well. Wes said she just held her hand out it out in front of her palm down fingers kinda curled, so it looked loke she wanted him to kiss it. I wish I could have been there to see that.

Well they were planning on letting me out perhaps 24hrs after surgery, but I've been in quite a bit of pain, and to top things off, I can't take oral painkillers cause the make me extremely nauseated. I've had a pain pump on since surgery, and that helps.... they've also switched up my anti's again since my chest started rumbling and I started coughing up this really thick brown green grossnes. Ther was quite a bit of it too... surprising for me... I'm happy to say that th rumbles seem to have subsided and the thick green gooies haven't made an apperance in a day or two. Unfortunately the puke fairy came to visit night before last, and now they won't let me go home before I'm ok on solid foods again. Looks like it might be my turn for a ride in merry-go-lightly round again....... (crap, no really. crap)

The good news is that my devious plan of baking my most favorite cookies as an incentive for my, all too wonderful Dr.s, Nurses, RT's, and basically just everyone who is playing on this let's make Laura feel better ball field worked out beautifully. Eveybody loved them and I really had a great time giving them out, I mean really, who doesn't love hearing that your cookies you baked from scratch were amazing???? Here's a link to my recipe, just in case anyone else wants to jump on the "we rock" bandwagon

http://allrecipes.com/Recipe/Peanut-Butter-Cup-Cookies/Detail.aspx

Well I guess that about covers it for me as of now........ now off to FB to see if I can reaarange my Cafeworld, and do something with my farmville........ I know, quite the exciting life I lead :) Thalk to you all soon. xoxoxo

I have to have a title???

haha Ok, I'm just sitting here wasting time till it's time to go pick the little one up from school (which is only like 5 mins from now so this will be short and sweet) Today has been a good day, besides the fact I got like zero sleep last night :) Wes and I got the kiddo to school, and then went grocery shopping at Wally World (not my hubby's favorite passtime) Came home and decided to make Chili for dinner. One thing you guys should know about me, is I LOVE to cook, so if anyone needs recipe ideas, hit me up ~lol~ Right now my house is filled with the aroma of slowcooking chili, which is delightful, if I do say so myself :) Then Wes and I stood and chopped onions with my handy little chopper my mom got me for my birthday. I find it's easier to buy onions in bulk, and then chop them all and freeze them, that way when I need chopped onions, I don't actually have to chop them ;) Well it's time to get going, and it looks like I've accomplished saying a whole lot of nothing..... I will say I missed the everyday things that you tend to overlook when you get too caught up in life :)

A bit more to tell

Ok, Well Like I said yesterday they let me come home on IV's, which I am very happy about :) The thing I am not so happy about is how we got here. Ok here comes the back story.....again......

Just over a year ago, my family and I moved back to Mt from Or for a new job my hubby got. When we moved we elected the COBRA because, of course, I can't be without insurance (ok I can, but that's neither here nor there) My husband had really really great insurance with his last company, and because of this we decided to keep the COBRA, even when he became eligible for benefits with his new company, I mean the coverage was better, and it was less money.... even paying the COBRA costs. I have also been on medicare for a couple years, so I wasn't really ever in danger of being without insurance, but it sure is nice to have double coverage..... not to get into the mess that is medicare part d..... 

This year when open enrollment came up again we had to sign up for the plan through Wes's company since the COBRA was set to run out in March. That means that this hospitalization was the first with my new insurance. An insurance that has a $5700 deductible that we have to pay out before they will pay for ANYTHING, including prescriptions.

I knew back in Dec that a hospital stay was in the cards for me, but I had to hold out till Jan so I could kick that deductible out and get coverage for my rx's. Fine, ok, I can spend $5700 easy in the hospital ~lol~ What I was not planning on was the fact that even though I'd been in the hospital for 2 weeks, the insurance had not processed my claim, so it doesn't look like I've met the deductible (in retrospect, I really should have seen this coming). The docs started talking about letting me come home on Mon or Tues of this past week. We were setting things up with home health and such, all was good. So, you can imagine my surprise on the day of my expected release when the home health company called and wanted me to pay upfront for the home IV's!!!! It was "I hadn't met my deductible"...... ok, 2 weeks in the hospital, pretty sure it's more than 5.7K.

Coming up with the money upfront was just not feesable for us, and I let my caseworker and the Dr's know that there was just no way we could pull that off.  Everyone was like well that's ok, we'll just keep you in so you can finish up the antibiotics and be ready for surgery. I was bummed that I couldn't come home, but really, I'd rather stay in and get the treatment I need than go home before I'm ready. On Fri afternoon my caseworker came in and said that he'd just heard from the insurance that they would no longer approve my stay at the hospital.... even though all my doctors (Pulmonologists, Endocrin, ENT, Infectious Disease) agreed and told the insurance that I was not well enough to be without antibiotics. the insurance sent it to their "physian review board" who turned out to be a Family Med Dr with no exp with CF.... at least that was my understanding from what my Dr said..... Anyway, besides all the recommendations from Dr's who actually know me and can see me the insurance said no, 2 weeks is all she gets. Now, I was faced with having to choose to stay in the hospital and potentially having to pay for it 100% (if medicare didn't pick it up) and paying upfront for my home IV's. You guys know which one we chose..... but man am I bitter. Really, it just irks me to know that insurance companies get away with this. I feel very fortunate that this is the first time this had ever happened to me. I guess in my own perfect world I was under the assumption that people mattered..... boy was I mistaken. Now not everyone playing in this game is the bad guy. My hospital went to great lengths to try to accomodate my needs with the medicine, even going as far as trying to set me up through their infusion center so the meds could be billed through the hospital. Unfortunately in the end nothing panned out, and we had to bite the bullet and shell out the money..... all I can say now is, Thank God for family, and tax returns ~lol~