sometimes it's okay to be sad...

sometimes it's okay to be sad...so I let myself be sad. Yesterday I came home from clinic grabbed my cat, laid on my bed, closed the door, turned on the musical talents of sigur ros and just allowed myself to be sad.
I have not updated my blog in a while.
I was on IV for two weeks. I stopped last Friday, with still short of breath symptoms, but we were hoping it was just asthma symptoms, since the infection symptoms seemed to be at bay, we switched puffers, last Tuesday but all Advair seemed to do was make my voice disappear...no improvement on the shortness of breath front.
On Sunday everything felt like an effort. It felt like I was drowning. Everything just seemed to much. Everything seemed like such an effort. It was a horrible horrible feeling. On Tuesday my lung function was down to 0.71 20%, down from where I was before I caught my cold a few weeks ago at 24% and .0.83 liters. With someone as low as lung function as me, those 4 percents mean the world.
How much longer do I keep living in this little in between world? This thought is what I have been mulling around on the back burner the last couple weeks. Is it time for me to get a transplant? I'm having lung envy, and life jealousy. I'm so tired of not being able to breathe, I'm tired of being on this roller coaster ride. ( I hate roller coasters, and it seems i have been on this one for months now)...I'm tired of missing out on things because I can't walk, or carry things, or it's too much energy, too much effort. These are all things that I had been mulling around in my brain....and then my doctor says these words to me yesterday "this is your second, maybe third infection this year already. You've been on IV for almost all of this year, if things don't improve in the next few weeks, I think we should really consider lung transplant. It's not an over night, thing like okay I'll have new lungs now, It takes awhile, there's a waiting game, and when you're in the 0.70's we don't want to miss the boat.".............

so i'm back on IV...just resting and taking it easy, going in to hibernation mode. Lots of 'brothers and sisters' tv series will be watched! Hoping to get back to 0.83...but really, maybe I am suppose to get a lung transplant soon...my doctor is right, I have been on IV for most of this year, and it seems one day I feel good, the next I don't...it's so inconsistent. When I have this low a lung function, and when I know it's going to take awhile, maybe even a year once I'm on the list to get lungs, what is the right choice? Living in this inbetween world is no fun. I want to start living life. I just keep thinking that if a transplant does work, being able to suck in air right to the bottom of my lungs, being able to walk around my home without getting winded, being able to go on trips without thinking about how exhausted or overwhelmed I'll be....being able to take a walk outside without gasping for breath....I want all that. Lately everything is just so much harder. I don't want to miss the boat on a lung transplant...but I don't want to get one too early either. I guess we just wait and see if these drugs work, and if I can actually manage to stay off IV....waiting game again.

I get by with a little help from my friends....

sooo I have some really really...REALLY great friends. My trip to bdos was cancelled due to a cold that I couldn't kick...until next year! sigh...
I also had to get in ANOTHER picc line yesterday. FYI, it went smoothly. Thank gosh. ( I guess the extra ativan pills I popped, are doin' the trick these days? ha I asked not to have the dr. that always butchers me. I even told the male nurse attending me, (well I think it was the ativan 'happy' drugs doing all the talking at this point) which doctor always screwed up on me and that I always ask not to have, he started laughing, as if he knew that the dr. was bad at them! gesh..
I started IV drugs yesterday, and am already feeling better! (could be the placebo effect, and the bouquet flower effect ha, but I'll take it!)...but my week is already filling up with fun activities to replace barbados...including wearing frilly frocks, big hats, and speaking with british accents for high tea! haha so fun, can't wait NM.
Also I got a call this morning asking where I lived, that they had a delivery for me, a flower arrangement delivery??? Well I'll be!....tickled pink I was! Who could it be from? so exciting! They were from my ghost best friend! Thanks cysta! LOVE YOU! They really truly absolutely made my day! My mom even cried! haha
She sometimes has it harder then me when I get my picc lines in...I've never been on the other side of the waiting room during surgery, but I imagine it's not fun...at least I'm the one on the happy pills, poor mama has to sit there worrying sans drugs. If they take longer, she starts to worry they're butchering my arms again. If she sees the dr. we fear walk out of the room, her heart starts to race, her palms start to sweat, and her tear ducts start to leak....and she didn't get any happy pills...so maybe she has it worse? ha
Anyways we made it through it...I'm on mero and cefapime this time. Every eight hours, so I'll get to stay out later then 9 this time round! haha my friend Brit is glad to here that! lol
Anyways just a little post saying, I'm doing well, so is my mom! ha
Sometimes even though you would think everything should be just awful...there are soo many negative ways I could be looking at this chest infection, but I'll focus on all the positives, heck i just got a kick ass bouquet of flowers this morning!...there are always little smiles, little laughs, little quirks, little happinesses to be found, always. Probably from those so called bad things in one's life, is when the great things in one's life will transpire. So I've had another set back...do you know how many "set ups" I have...tons. I have tons to look forward to in the next few weeks! I'll get on another trip....maybe San Fransisco?? Smile world...I am.

picc line in tomorrow

are you shocked? I am...I just couldn't get rid of this cold, my lung function was down on clinic on Tuesday, and these orals just aren't cutting it...so tomorrow I get my picc line in ( i just got my last one pulled two weeks ago and was feeling SUPERB!!!) and start IV antibiotics tomorrow...man what horrible, horrible, HORRIBLE luck...sigh...
wish me luck tomorrow...here we go...again....

I caught a cold...rotten luck

I haven't been updating this as much as I have been in the past...I got a scolding from my cousin who lives in the states...clearly she didn't get the memo that it's freakin' 20 + degrees out, and thus I must be outside most of my days, making up for the lack of vitamin D from the dark winter we had! ha That...and my internet connection for the past week has not worked in my apartment, so I'm always in my parents part of the house, updating things. Also I've been busy getting my 'Gorgeous Gal' and Button Baby Beauty Hattitude Collections up on the site!

I caught a cold Saturday morning...woke up with an awful sore throat...rotten luck eh? I was off IV two and half weeks, feeling GREAT...and I had to get a cold. I went all winter long without one, and come Spring, JUST as I get off IV...whamo I have the worst luck in the world, and catch a nasty old cold. I'm hoping I can kick it without orals. I'm doing chest percussion physio (well my Dad and brother are doing it for me, thanks guys!) for those who don't know what chest percussion is, they clap my chest to loosen the thick sticky mucus from my lung walls, so I can cough it up easier, essential when you have even more thick sticky mucus during a cold. I've also started this saline nasal rinse...that is quite interesting. Up one nostril, Down the other...google neilmed saline rinse if you want to watch a video of it haha

I also have been working with a good friend on out CF fashion show Fundraiser. We're hoping to have a venue booked next week, and have gotten a really good response back for forming a committee to help us out. It's going to be a lot of work, but very rewarding and fun I think!

On the not so good news front, Eva from BC who was waiting for her second set of lungs after her first set went in to chronic rejection, from the documentary, 65 Red Roses passed away this weekend. She had a way about her, a true fighter and beautiful spirit. You can check out her blog by clicking here.

Thank you Eva for making a difference.
Thank you for giving all of us a chance who follow in your footsteps when the time comes for our new lungs.
Thank you for creating the documentary that increased organ donation around the world, and tripled it in Canada alone.
Thank you for having the audacity to tell your story and your showing your courage and beauty to the world at the age of 25.
Thank you for telling your story so people like me can hold on.
Thank you for being brave.
Thank you for writing so genuinely, freely and graciously.
Thank you for spreading awareness about our disease.
Thank you Eva for everything.....I'll keep fighting.