Why i hate your healthy Valentines Day.

This isn't really a Valentines day post so stay with me for a minute! i know many people don't recognize Valentines day as a "real holiday" and maybe its not, but i like the idea of a day centered around love and showing the ones you love just how much you care about them. I think that people get so busy that sometimes they forget to tell the people around them how much they really mean. Keep in mind i said i like the idea. I hate the day.

Its hard to find someone who will stick by your side through all the doctors and hospitals, all the sick days, and all the physical limitations (my sinuses are shot so if you wanna kiss me more than twice i wont be able to breathe so just relax bud). That's getting ahead of myself though, first i need someone willing to date me and who wont run for the hills after a little while. Have you ever tried getting a date with oxygen on your face?? Its not easy (except for that awkward month when "The Fault In Our Stars" came out and everyone decided they just had to talk to me).

Sure there are people out there who can look past all of that and love someone who's chronically ill and support them and care for them but it can be hard to find that person. Personally my illness has ended almost every relationship Ive ever had whether it be the hospitals and constantly being sick or things like having kids and being around to watch my family grow like a healthy woman could. So while i like the idea of the day, seeing all the posts from my friends about how they spent valentines day with the love of their life admittadly makes me a little salty (pun intended!).

I haven't given up compeltely though. I've seen love make it through the worst of the worst and i mean its not like Ive been single forever. Theres someone out there who can deal!! Love and relationships are complicated for any 25 year old with or without medical problems messing it all up. Plus with everything i have going on maybe a date with my dog on the couch with a big glass of wine is really all i need this year anyways!! (Fingers still crossed for a box of chocolate though!)

Milwaukee Mini-Trip!! (a bit wordy-no camera till next week boo)

This weekend was absolutely amazing! Started it off with the best dinner at Kampai with Joey on Friday (that boy might be a little too obsessed with that place...lol) and then a night out in Rosemont with him and Allie which started out as just a few drinks, not a late night or anything but of course i dont even remember leaving and also spent a good amount of time throwing up (maybe the 2 glasses of wine, sake, and 3-5 shots we took before even getting to the bar had a little something to do with this)...Joey was an absolute saint and sat with me in the bathroom though and did what he could to help me feel better and i owe him for that!! :) and then Saturday me and him left for Milwaukee around 1pm for our overnight stay in a haunted penthouse!! We got into town and to The Great Lakes Distillery by 230. The tour we were taking was at 4 so we got some drinks (bloody marys with crazy skewers of picked green beans, cheese, meat sticks, and what not and he also got a reeeally good moscow mule) Part of the tour was a tasting at the end with 7 different and i was still a little hungover so i was a little nervous for that but it all went down okay! then we headed over to Rock Bottom for dinner and that also was amazing, their also a brewery so we had a few drinks there, also had a drink at High Hat before going to Shakers (the whole point of the trip!) The thing with Shakers was that i thought the name "Shakers Cigar Bar" was just a name...nope...its a cigar bar...with cigars...and smoke. Greeeeeeat. It was a CF death trap! The smoke hit me like a pile of bricks as soon as i walked into the place but we decided to get our drinks and i sucked it up, we got 2 absinthe cocktails which werent terrible but also werent that great haha and then got 2 other cocktails which were delicious and started the tour! It was really creepy in the basement very dark and just had a weird feel to it! They did some sort of thing with these two rods and started asking questions and then the rods would move it was weird hahaha. When we finally checked in a little after 11 we were both a little tired and i was scared and Joey didnt wanna piss the ghosts off also the room was FREEZING hahaha so not much actual ghost hunting was done and i insisted he stay right next to me the whole night (i may or may not have even had him go into the bathroom with me while i went pee lmao) We felt bad cause a girl at the bar gave us these two drink that were like 25 a piece and didnt charge us and we couldnt even do it..couldnt drink them lol. I have yet to listen to the digital voice recorder that i brought but im not sure theres anything on it..we only used it for a little bit. Didnt see anything crazy and heard a few knocks and sweeping sounds but that really couldve been from anything so all in all it was fairly uneventful and we headed back this morning just stopping at cracker barell and a WI cheese shop cause both felt pretty bad. Im not sure id do it again because the smoke really took a toll on my lungs and i was really hurting today and im now suuuuper dependent on my oxygen and my health is worth more than a redo stay in a haunted penthouse but i did have an amazing time with a really really amazing guy and im so glad we went :) Were gonna watch the pro bowl in a little bit over here and then get some much needed sleep! I hope everyone had a great weekend as well!!!
-xx

Appointment/Health Update!

Its been a little bit but i hope everyone new year has started off on the right foot so far! Just to update everyone on how im doing I had a doctors appointment today at 3 and it didnt go as well as i hoped but i wasnt admitted so I definitely not complaining. I lost 2 pounds (down to 96 now) and my oxygen levels seem to be staying right around 94 now. My FEV1 was the same 28% as my last appointment and although its disappointing that its not higher im glad it hasnt dropped. The last 2 days ive been coughing up blood as well but its under a couple tablespoons a day so its not a huge concern right now the doctor just said to call him back if it doesnt stop or it gets worse and hell set up an admission right away. Also ive had a bit of a cold for over a month now but since that seems to be clearing up too im not worried :) all in all i think it went okay but it was a pretty disappointing feeling to have worked so hard like i did and still have lost weight and to have my lung function stay the same...i thought for sure id made a difference! This just means i have to work even harder before my next appointment. My weight goal is 100 lbs (i wont be healthy enough for transplant till i can gain and maintain my weight so is really important) and i wanna get my FEV1 up past 30%, its gonna be really difficult and take a lot of time and work to get there but i have an amazing support system full of people who help motivate me and keep me on track and im so thankful for all of them! Heres hoping guys!
xx

Last Post Of The Year!!!

Goal achieved. I was home for Christmas! I wasnt too sure if id be able to stay home for the holidays this year as i came down with a pretty bad cold, sore throat, runny nose, horrible horrible cough, couldnt catch my breath for anything, the whole 9 yards. Its hitting me pretty hard and just tonight my lungs have decided they had enough and have all but given up on me, i have 1 day till NYE and im very determined to make it till the new year at home! I need to tone down my stubborness, im well aware. Im once again hooked up to my oxygen concentrator cause my oxygen levels without it are dropping down to the 88%-89% range (down from 94%-95% last week) and im thinking an admission is inevitable no later than Jan 2....boo. On the bright side i had an incredible week! Christmas Eve at Sarahs was...well...entertaining haha. It was kind of a clusterfuck but hillarious at the same time, i had a great time! Then i slept most of the day on Christmas day then that night Joey came by and we watched a movie. Thursday night we went to dinner and then watched Hot Rod, which is hillarious and one of the best movies ever and he didnt really agree..but then again he likes Adam Sandler over Will Ferrell so Im not gonna read too much into his opinion there haha, Friday he met up with me and Michelle at Tobys and it was a great night and then we put Harry Potter on and were lazy all Saturday morning and went to Maki Sushi tonight :) Definitely the best few days ive had in a while! I havent been so happy in a loooong time! Tomorrow will be spent planning NYE with Allie and sitting veeeery still lol.

                               

me?? oh ya know, 29%. FML.

    WARNING : PITY PARTY ALERT AHEAD!!!
     PROCEED WITH CAUTION!!!
Im excited to start the new year and hope its just as amazing as this one was with him, Allie, Michelle, Sarah, and everyone else who made every day incredible. Im hoping my lungs dont fail me too quickly so i have time to make that happen, and im hoping all the friends ive made in my CF communities are happy and healthy too, it breaks my heart when i log on an almost everyday someone else is gone, someone else lost the battle, and im scared that it might be me next year. The breaths i take are shorter and my heart is beating faster and im tired more than im not, I wanna go out and keep up with everyone but my body wont let me. It makes me sad but not for myself, for Sarah who loves and cares about me more than anyone i know. For my mother who doesnt always know how to be my mother but would be devastated none the less. For my niece who lights up my world and my brother in law who im so glad joined our family! Hes good to Sarah and Gwen and they deserve the best :) Im sad for my best friends who are positive to the point of pure denial. The only person im not sad for is myself because ive had just about enough of not being able to breathe, not sleeping at night, eating all day just to lose more weight in the end, hours of meds and tons of pills, and missing out on life because im so tired i just cant move. Maybe im just having a rough patch...a year long rough patch...and i will fight as hard as i possibly can to the very end but if i should lose, im at the point where im okay with that.  Heres to making the best out of this new year, whatever it should bring, i resolve not to let a single day go by that i didnt make the absolute most out of.

Minor Set Back

Since getting off my IVs a few weeks ago ive felt pretty great i had some nights downtown and really started feeling like myself again and Thanksgiving was nice i spent it with my sisters family and then slept over at her house Thanksgiving night and did some black friday shopping (at Half Price Books hahaha) with her and her family :) It was fun and i loved spending the holiday there i love them all so much! Then last night i decided to go to Winterfest (stores give out hot chocolate and brownies and things and the town is decorated for Christmas) and also went to Houlihans to watch the hawks game and it was fun but even while getting ready i noticed i was really out of breath and couldnt stop coughing, then by 8ish i really started to feel it so as soon as the hawks game ended i went home and set up my oxygen and went to sleep but kept waking up with a HORRIBLE headache! It woke me up at least twice and is one of the worst headaches ive ever had. Every time i cough it sends shooting pains through my head and i just wanna cry :( It feels like a pressure headache and im still having trouble breathing and starting to get aches all over so even though I just got out of the hospital a few weeks ago but im thinking it might be time to go back already i feel terrible and it doesnt feel like a cold to me but im gonna give it a few days and see how i feel then if im not improving ill call my doctor and set up an admission and another course of IV antibiotics (which also means another picc line if they can start one and if not, then i have to get a port...boo.) until then its sleep and oxygen for me! Love to all of you i hope your holidays were good!!

xx