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~

Freedom.... kinda!!

Ok quick update :) They sprung me today Whoo Hoo!!!! I am at home with IV's now, and will go back on thurs for surg, but I'm home for a few days!!! Just wanted to jump on and let y'all know. Will update better tomorrow. Much Love :)

Can you say bored yet??

Well there were talks of letting me go home on IV anti's until I have my surgery, but because the wheels of the hospital and the wheels of my insurance are not currently running at the same speed it looks as though I will be here at least till after surgery. I am so thankful that I have such great Dr.'s and nurses, hospital staff, family, and friends. I would seriously be loosing it without them. Oh and I have to give a shout out to my laptop..... thanks for putting up with my 12 hr a day power sessions with you :)

Since I'm still stuck in here, and really fishing for something to do, I think I will talk about my favorite, must see tv shows, in no particular order.......

Greys Anatomy

Private Practice

Bones

The Mentalist

Medium

Desperate Housewives

Burn Notice

House

Saving Grace

The Closer

NCIS

Chuck

White Collar

Ghost Hunters

Lost (although I do have to admit, I am a little "lost" after last season)

Psychic Kids

Horders

Criminal Minds

CSI- Las Vegas

Man Vs Food

River Monsters

I'm sure there are more that are just slipping my mind right now, and obviously I don't watch all of these in any given week. I have my can't miss ones, like Greys, but I usually don't rearrange my schedule to fit the TV...... that's what DVR is for right?? I do have to say that watching the travel channel while in the hospital is pure torture, esp if they are doing a food countdown or something of that nature. The other day I did watch Fried Food Paradise, and ever since then I've wanted some deep fried pickles.... weird right? For the most part, I'm now sticking to HGTV throughout the day, this way the only urge I really have is to redecorate when I get home. What do you guys like to do when you're bored????

Heard from the ENT Gods

Went to see the ENT today, and they have decided (him and the docs in Denver) that the risks of a sinus obliteration outweigh the benefits. It is good news, but also a piece of me is like CRAP that means the headaches will prob not get better..... also what happens if the infection decides to eat the derma away??? Will it be too late, or can they still do something to correct it? I mean we all know that the infection up there is a powerful one, IMO if it can eat bone, it can eat derma...... Oh well I do have to say I'm really happy that they will not have to do such a drastic surgery. I may just be being vain, but I was really worried that my hair would grow funny around they scar ~lol~He did inform me that I'm on the surgery roster for next thurs, the 28th to have another trefornation done to see if that will relieve the headaches for a longer amount of time. Looking forward to it??? Not so much, but looking forward to the headaches getting better, definitely.

Another development today, the new anti seems to be doing a better job. My "smokers hack" has turned into a mild annoyance, so that is a good thing. We are still trying to figure out a time-line for me to go home, but I'm hoping it's soon, since it looks like I'll more than likely be re-admitted for the surgery. Hope y'all are having a great night. Much Love xoxoxo

Waiting waiting waiting.....

Not alot going on today, Ok I take that back..... There was alot going on today, although none of it was really what I wanted to go on today. I was waiting to see what the ENT said about the docs from Denver, or the possibility of sugery, or if we were just gonna hope the anti's start doing their job, and at least clear the infection up enough to make the headaches subside into some sort of manageble nuisance. I didn't see the ENT today, but my sources (my Pulm) say that he has a slot penciled in for me tomorrow, and that he is still waiting to hear back from Denver as well. I guess that's ok, hopefully the docs in Denver got back to him today, and he will know more tomorrow, it's not like I'm going anywhere ;)

They did decide to switch up my antis today since I still have this coarse nagging cough that normally by this time is something of a distant memory (don't get me wrong, I cough, but ususally, unless I'm sick sick I don't sound like I've been smoking since I left the womb) Also The fullness in my sinus's is usually better, which, surprise surprise, is not getting better either. They are in the process of doing sensitivity studies to see if my bugs may have grown a resistance, but so far no word on that front. The infectious disease doc decided since I really felt like I should be feeling better to just change up the drugs and see if that improves the yuckies. Previously I was on Doribax, and Tobi with a short stint on some Vanc, but since no MRSA was cultured they pulled me off that. I am now doing a continuous infusion of Cefipime. Something that I've never done before, and although I've only been on it for about 3 1/2 hours, I'm already finding the IV pole tedious. they are also talking about maybe trying to desensitize me to Cipro again, but we're gonna give the Cefepime a chance to do it's job before we decide. They also want to continue with the Tobi, but are holding my dose tonight for a reason unbeknownst to me (although I'm assuming it's compatibility issues). That's all that's new, cross your fingers that the Cefipime works, and that the yuckies go away.

Up in the air....

So not too much to report.... I did finally speak with the ENT. They are considering the possibility of doing a frontal Sinus obliteration, not a fun sounding surgery if I do say so myself. My ENT came into discuss it with me last night, and he said he was not all that comfortable with what it would entail.... I guess a little history is needed at this juncture. Approximately a year ago I had a frontal sinus trefornation, where they make a tiny incision kinda in your eyebrow and then drill thorough your forehead, clean the infection, and then place a drainage tube to aid with the draining. When they did the MRI to get a better picture of my sinus's they realized that the infection that was socked in up there had completely eaten the bone away between my sinus cavity and my brain. That was a hard surgery to go through, the first time I had a reaction to the anesthsia and was pretty much a zombie for for days... couldn't move, could barely talk.... didn't eat or drink..... It was bad. They ened up having to remove the tube because I was throwing up so much and it was causing alot of pressure to build up behind the tube. About a week later My Dr. redid the surgery and this time I handled it very well. I had the tube for about two weeks. Here's a picture, of my "Horn"

Anyways, back to the matter at hand.... The reason my Dr. is weary of doing the sinus obliteration is that there is no bone left to protect my brain. If we did the obliteration, he would effectively have to remove all infection from that sinus cavity, and to do that he would pretty much have to scrape the infection away from my brain without penetrating the derma.... He straight up told me that he has never had to do this before (a sign of a great Dr. if I do say so myself) and was not entirely comfortable proceeding without exprloring other avenues. As a result, he was going to call a consult from the team in Denver and ask if anyone there had any expierience with this. If there is someone in Denver who has this type of expierience it is likely that I will be headed down there for at least a consult. On the up side, he did say that when you have an obliteration done they fill your sinus with fat from another part of your body..... lets hear it for some impromptu Lipo shall we??? :) He did say that he would like to do another trefornation, just to help get some relief from the headaches i've been having. Don't know when that will happen, but I see him again on Mon, so I will know more then. More about Denver, more about the surgery. Wish me luck :)

Hurry up and wait...

Today has been a day filled with nothing.. I saw my pulm early this morning, but didn't learn too much from that visit that I didn't already know. He said that My ENT would come in later to see what to do with my sinuses, but I haven't seen him so far (unless he snuck in while I was eating in the Caf w/ my family) at this point, I'm guessing it will have to wait till tomorrow. All in all today was good. My parents were in this afternoon and brought me food from my favorite reasturant, and then this evening my hubby, daughter, BIL and SIL came in and we all had dinner in the cafeteria, so effectively no "real" hospital food today!!! Hooray for small victories :)

A little more about me.....

This is a picture of my family. It was taken just before Christmas, and boy was it cold..... I even think my teeth were chattering in this picture. In my first post I told you the basics of my life, but I didn't really go into detail about how I got here....... Where to begin...... Ok, well I grew up in Montana. I was the only one in my whole town who was dx'd with CF, so fitting in in school was always a bit of a challenge for me. Kids don't really understand when you have to stop at the office everyday before lunch to take some pills. I think it was because of this that I used to try to hide My Cf. I have since gotten over that, and am now finding it liberating talking about my life and the struggles that come with it.

Looking back, I think I had a pretty typical childhood complete with best friends, enemies, dance lessons, figure skating competitions, laughter, tears, crushes, boyfriends, and a fair share of rebellion (ok not that much) plus a list of medications that would make my Gramma proud. I graduated highschool in 2000, and went on to start college at MSU Bozeman. While attending school, I also worked at Target (it was also Dec of this year that would mark my first ever hospitalization) I made it through my first year at MSU, and I loved it. I loved the freedom of being on my own, having roommates, and overall just living.

It was the summer of 2001 when I traveled to Billings Mt with a group of my fellow Target workers to help set up and new store being opened there. It was also when I met my now husband, Wes. I met him on August 2, 2001, and really on all accounts it was love at first site (don't get me wrong, we've had our rough patches, but I've never doubted that he is the only one for me) It was a whirlwind kind of courtship that pretty much ended up with me deciding to transfer to MSU Billings so I could be closer to Wes within the month. By Sept I was living in Billings, and still working for Target, unfortunately I was unable to start the frist semester at MSU-B because of my health. The year went very quickly, and I honestly think it was one of the hardest years for me health-wise. I had every intention of starting back to school during second semester, but it seems as though my exacerbations correlated perfectly with the change of the seasons, therefore landing me in the hospital just in time to start back to school. Needless to say, I ended up taking that whole year off, and by that summer, Wes was talking about going back to school himself. Wes decided that he wanted to go to school to become an A&P Mechanic, so he researched schools and chose one in Portland Oregon. It was then that he asked me to move to Portland with him, and being the whimsical soal that I am, I of course said yes. We packed up all our worldly belongings into our 2 Honda's and began the journey to Oregon on August 6, 2002. That was also the day he asked me to Marry him. Bet you can't guess what I said........

Well folks, it's time for me to get on.... lots of important hospital stuff...... I will continue this reminiscence at a later time <3

Fried Insulin Pumps, and The Like

I had an MRI done today on my sinuses, which in and of itself is no big deal...... I got over to the center (by ambluance, because Billings has no MRI's in their hospitals) and was getting set up. Ususally the techs ask you if you're wearing anything metal or have any bb, bullet fragments, and so on and so fourth embedded in your body. They also usually ask you if you're wearing an insulin pump, well today they didn't...... I've had my insulin pump for a good five years now, so in all reality it is just an extension of my body, and on most days I actually forget I'm wearing one unless I am currently in the process of administering insulin to myself, as was the case today. I laid down on their table and handed them my glasses, and got ready for the ride. As I was being pushed into the tube I felt a tug at my side, and realized that I had forgot to take my pump off, before the machine had been turned on....... I quick told them that I still had it on, and disconnected myself. They came and put it out on their desk. I didn't think too much more of it till they came back in to give me contrast, at which point the tech said that my pump was alarming and it wouldn't stop. When I got done with the MRI, I got my pump back, looked at the alarm which said motor failure, and then I knew it..... it was just fried. I held on to a slim glimmer of hope, because after I cleared the alarm it asked me to rewind it, which I promtly tried to do to no avail because the alarm just came back on.... but still the glimmer of hope was still there, because with the alarm also came a message of a low battery. I rode the 2 minutes back to the hospital and immediately got into my bag of supplies for a new battery. I crossed my fingers and made a wish, then tried to rewind it again. Nope, no luck, my trusty little pump has passed on. I called the company, and explained what had happened, they were very accomodating and assured me that a replacement pump will be at my house by 10:30 a.m. tomorrow :) On the down side, my pump was no longer under warranty, so now my insurance has to approve the pump once again. The one they are sending me is a refubished pump, exactly like the one I had at a cost of almost $500, which is supposed to be covered by my insurance, lets cross our fingers shall we????? Just another day in the life of Laura. On the upside, my sinus MRI has not changed and my headache is better today. Also Crazy crying girl seems to have retreated back to the hole she crawled out of. I'm sure I will have another adventure tomorrow, till then :)

It's been a bad day....

So today has been one of those days where I just want to curl up and ignore the world around me. Not only am I on the prednisone emotional rollercoaster, I have a headache. The combination of the two, make Laura not very pleasant to be around. The docs have decided to come down on the pred, so I'm hoping that this crying crazy girl will disappear into the dark recesses of my mind again sometime in the next few days. I think the absolute worst part of it, is that I can't concentrate on anything of importance (you know, so I can take my mind off the crazy) for more than a couple minutes. Oh well, maybe tomorrow will be better.

Just Getting Started

Well, I've done it.... I've broken down, and started a blog. It's not that I think I have anything important to say, or a tremendous job that you have to hear about, I really don't think that I will change anybody's life by writing this, but I do have a story, and I'd like to share it with you,

Let's start at the beginning, shall we?? My name is Laura, and I am 27 years young. I am, in many ways your typical American woman living the American dream. I am married to a wonderful man, and we have a BEAUTIFUL 5 year old little girl, who is truely the light of our lives. We live in a small town in Montana, in our very own house complete with a dog (Marley, no, not after the movie) a cat (Smokey) and a backyard. At this point in time, you may be asking yourself, where the story is in all of this, well I'm getting to that.

I was born in May of 1982 to two wonderful parents, who mean the world to me. I have 2 older brothers, who have given me grief, but in the long run been the best brothers a girl could ask for. It was apparent from early on that something was not quite right with me, although, no doctors seemed to know just quite what. I was always very small, and cried alot. When I was born I weighed 7lbs 11ozs, by the time I was seven months, I only weighed about 13lbs. I can honestly say, that I owe my life to my brother. He was 13 at the time, and to my understanding had just watched a documentary on Cystic Fibrosis. After doing so he came and picked me up and kissed my forehead, which tasted quite salty. He informed my Mom, who called the Doctor, who had me come in, and performed a sweat test. In December of 1982, I was diagnosed with Cysic Fibrosis. What is Cystic Fibrosis, you may ask? It is an inherited genetic disorder that affcts approximately 30,000 people (adults and children) in the United States. To spare you all of my babble I will include a link to the CFF, so you can read more about CF, if you want to..

http://www.cff.org/AboutCF/

After being diagnosed, my parents did all they could to keep me healthy, without depriving me of a childhood. They were told that I would not live to see my 18th birthday, and to be prepared for a child that was in and out of the hospital on multiple occasions. I remember being very young and doing breathing treratments. I also remember my Mom cooking a completely separate supper for me (chicken and rice) just to get me to eat. It is because of their diligence that I was able to just live, and stay hospital free, until after my 18th birthday (yes, I had moved out of the house by this point in time) Proved those Doctors wrong, didn't I??

In December of 2000 I was hospitalized for the first time with pneumonia, and so began my rollercoaster ride. Since then, I have been hospitalized about every 3 to 4 months for a tune up, as I am right now in fact. CF is a degenerative disease, and so as I grow older the worse it gets. I am by no means, as sick as I could be, but I've had my fair share of trials and tribulations. I have always been affected by horrible sinuses, with my first sinus surgery at the age of eight. I've had 11 since then, one of which the actually had to drill into my left frontal sinus and insert a tube to help it drain (pretty picture, you better believe it)

Anyway enough about me for now..... it is in fact time for the wonderous hospital food. I will try to keep you all updated, and not just about my CF, but about all aspects of my life. Thanks for listening :)