drip drip drip drop...goes the IV

So it's all done...sigh. What a relief, and ladies and gentlemen...Hatties got her karma back...
yesterday went splendidly, stupendously, wonderfully smoothly.
We traveled down to the hospital, and as soon as I sat down in the waiting room anxiously clutching my 5 ativan pills for dear life I see him......the awful doctor who has butchered me every single time, my stomach starts to heave, my heart gets tight and I start panicking...breathing deeply I go to the washroom, and my mom asks the other tech or doctor if he or another person would be able to do the procedure, just as long as it is not Dr. Rake (names have been chnaged to protect the innocent...although in my books he's not so innocent) So now that that was taken care of my heart stopped wanting to jump out of my rib cage, my stomach didn't feel like melting in to the floor, and with that I popped one of the extra strength ativans. I was ready.

I was taken into the room, where the nurse was SOOO lovely, and since I've had 7 or 8 lines before and bad experiences, she said "why not take another pill, you've got 5" so I popped another extra strength ativan...I was ready for anything...I had two of those babies pumpin' through me. Things were going to be just fineeeee. Then the doctor walks in, one I had a few years ago, who did a stupendous excellent job, that set me even more at ease. My appt. was for noon. They took me in to the room at 11:40am, at noon they were rolling me out in a wheel chair (yes thats how loopey I was from the ativan) to my mom. She was shocked, last May, I was in the room for an hour and a half. This doctor took 10 minutes. It was a lovely experience, yes can you believe it, I called getting your arm frozen and a wire rod shoved up your arm a lovely experience hah, maybe that was the ativan thinking but still...the doctor said my veins normally spasm with the other dr. Rake, which makes it almost impossible to thread the line in, so since I get nervous when I see him, my body probably freaks out.

So conclusion, I think it is for the best if i never get that horrible doctor Rake, since my veins even scream when they see him. Also the new doctor said that the ativan probably helped relax me adn my veins so he was able to thread it no problem. Honestly it is jsut such a relief to have it done, and to have it done smoothly. I was sick for DAYS in may after doctor Rake butchered both arms. Today I am just tired from all the meds pumping through me, staying up late trying to regulate a normal at home pattern, after this evening, I'll be at a normal dosing schedule so I can sleep through the night.

I am on this new study 'the bio lab study' ? where the lab chooses which IV drugs to put me on, instead of me and the doctors. I'm on ceftazine, and colliston. I've never been on this combo before, so hopefully this will be the right combo right from the get go, and I won't be weeks on IV. I think with the way yesterday started out, it is only going to keep getting better!
Also I saw my fav. doctor who is back from Australia and will be starting at clinic in the next few weeks! She is back, and we were the first people she saw as she walked off the elevator, it was soo nice to see her. I missed her so much and am so glad she is joining the CF team!

I don't really remember a lot about yesterday, my nurse said she takes one 0.5mg tablet of ativan and she is out of it...I took two 1mg tablets...and i'm smaller...sooo you can imagine the loopey/sleepy state I was in. I wrote this on a piece of paper while I was sitting in my wheel chair drugged up at the hospital waiting for the meds to run through...

"KARMA IS BACK
good vibes, good feelings, good energies - everyone sending them out to me made today one of the best! dr. P put line in - took 2 ativant drugs, very lovely dr. - took 15 minutes - out by noon, this just means starting out right on the road, we picked the one that's smooth, just paved and no pot holes, first ones on it....
This is it, this is everyone's good thoughts, vibes, messages, everything, text messages, encouragements, thanks you aunt norma for text this morning, thank you Nic for understanding so much how my health is important and taking one for the team about post poning our trip. Thank you Amira for my late night message right before i was to get the procedure done. Thank you Shelagh for your trq and green vibes being sent out! To have these people take time out of their lives and wish me well, means more then I can say. Thank you mom for driving me down, trying to distract me as we saw the horrible dr. thank you for taking the reigns and telling the nurses that we could not have him. thank you dad for the text right before i went in. thank you Carly for thinking of me today. Lindsay girl, wait till you here all about it! Thank you for the good luck chants (I can't read my hand writing on this paper, but I think it says chants? hah) Thank you to my brother, Mac who was the first text message i got after the picc line was in. Thank you. Thank you to everyone else for all the vibes, energies, spell casted, (Spells casted? WHAT was i thinking about?? haha) to get me on the right track today. I am so thankfully, gratefully, wonderfully awesome that I have you guys in my life to keep me going, keep encouraging me. SO to all of you i BLOW MY BIG KISS + HUG vibe right back at you!"

ahahah you know I must have been a little looopey as I am not a big hugger or kisser....
well thats how I was feeling right after I got the line in. Thanks everyone for all the text messages and good wishes!

Things are looking up! Thanks so much for sending out all the vibes, they worked! YAY. Next step let these drugs, and oxygen do their thiiiiingg so I can get out of this country and to the beach! Rest, sleep, food, and television. If anyone has any good series of DVDs' they want to loan me, I would looove to borrow them!

Life

Life's a road that has to be traveled, no matter how bumpy....

waiting game.....

To everyone out there who is waiting for a lung transplant...holy, I give you guys such a hand. I am sending out crazy epic vibes that you get your lungs soon and that everyone signs up to become a donor. I can't even fathom what it's like to wait for a week, a month, a year...with no set date on when these new lungs will come.

I have been waiting for 30 hours to get a picc line in my arm and I'm already going crazy...but to wait for months on end for a new set of lungs, never knowing when it's going to come... I have an end date to my waiting. People waiting for transplants are truly so strong and I admire each and everyone of you. I had no idea...still have no idea, just how hard it is going to be to wait for those new lungs. I think it is probably one of the hardest things to do...here I am whining about waiting for three days for a picc, while some people have been waiting for months with no set date for a new organ that will save their lives.

It's hard though not to worry about waiting three days for medicine, when your lungs feel sluggish. Like your chest is swimming against an undertow current. Moving your chest against this thick, thick, heavy, dark, enclosure of water, heavy quicksand and it's pushing, rushing, shoving, enveloping your lungs. You can't get breath down into the lower lobes of your lungs. You can't breathe deep enough to fill all the nooks and crannies that need to be filled for a simple inhale, exhale of breath. Just one breath that so many of us take for granted, and yet so many of us strive and struggle with...just a simple inhale, exhale leaves some of us breathless.

Sometimes it feels as if a piece of metal has been shoved in between your top lung lobes and your bottom lobes, scraping the tender pink tissues of your precious lungs, making a horrible mess inside, causing your tender lungs to bleed and exacerbate.
Your breath refuses to get down deep enough, won't get down deep enough, can't get down deep enough. Mix that, with the struggle to inhale breath into your lungs against the sluggish quicksand trying to drown you... and sometimes it's a little scary, a little overwhelming, a little daunting. There is nothing you can do about it, and you worry about getting sicker, you worry that the water will get so thick, that your chest will no longer be able to push out and thrive even a little bit against the pressure, and you worry about how much time your losing by not being put on drugs right away, because it's scary how fast CF can turn on you, it's scary how fast your lungs can decide to call it quits, they can't swim against that water anymore, it's too thick, it's too sluggish,and it's just too hard for them...it can turn in a day, without any regard for you. That's what it feels like sometimes in a bad moment, in a bad glimpse, in a bad breath....

Last night I slept with oxygen for the first time in my 22 years. I started to panic last night, as my chest is feeling so heavy and sluggish to get each breath in. Due to my over active imagination (although great to have as a drama major in high school...as a girl living with a chronic illness...sometimes...eh not the best combo! ha) I started freaking out and thinking I would never wake up if I went to bed (obviously never the case, but the things this brain of my dreams up you don't want to know haha) since my stats are now sitting at 88-91 and when you sleep they go lower. My cysta told me to put the oxygen on, my body is already working over drive trying to fight this infection, why make it work twice as hard, and have it fight to get oxygen too. I just have to relax and rest and stay put until Thursday.

I wore oxygen all day today as well. My stats were 89, this evening they are 91-94. It was weird wearing oxygen around all day, having this long 50 foot tubing trailing around behind me, while my cat, thinking we were playing a game, kept chasing it.

So I continue to wait to until Thursday, when I can get these drugs pumping through me...sometimes I think it would be easier if I had a port...but thats a huge ordeal I think, and something that would be permantly in me. I'm not sure I want that, although it sure would make going on IV easy...maybe to easy?

I started reading this immunity book how to boost your immunity, while fighting infections, what each vitamin means and what it does. I'm taking so many vitamins, E, D, C etc. and most of them I do not even know what they are benefiting me for, so it's really interesting learning about them all.

Anyways I'm off to do hypertonic saline mask, which I've upped to two masks a day of it, since it seems to get the most junk out of me (which is really why I needed to be in bdos. My mucus just turns to liquid down there, and it's like I'm on hypertonic saline 24/7, my oxygen stats are 96 and 97 down there).

I think I'll be able to nip this infection a lot quicker then normal, because I've been working out so much, and these last 7 months since I started exercising, each time I have gotten an infection and needed orals, I was never lathargic or loss of energy, and able to bounce back faster.

I think with the right combo of IV drugs ( I have a few theories of what I want to try, as I spent the majority of today, playing doctor and detective at the same time, (a past time I am getting quite good at) typing out in word document a table of the past 2 years of all my FEV1%, lung functions, oxygen levels, and different drugs that I went on, trying to find a pattern, what worked best) and exercising and taking all my vitamins, fish oil, and prim rose oil, that I'll be able to kick this infection in the butt, and let me tell you as soon as I do...I'm going dancing...and I wouldn't mind a bit, if it was in Barbados....haha

Pollywogs

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH....that is my internet scream of frustration and disappointment...

Today I went to down to clinic. I called my doctor yesterday, thankfully she was on call this weekend. I asked if I could come down on monday for my breathing test, and blood work, because to leave it until Tuesday, normal clinic day would be cutting it really close to cancel everything for our trip Wednesday morning. most things need to be cancelled within 24 hours....soooo we went down today and it was the worst breathing test I have done in eight months....with a white blood cell of 18 (normal is below 11) Grrrr

I blew a 19% a .68 liters...I guess it was coming though, I have been battling this infection with orals for the past two or three months. I still can't believe though that my lung function has dropped so low.
I can hear all the crackles and gackles and gurggles of awfulness inside my chest though. It's also not fun when I get out of breath putting on my slippers..time for a good tune up. Let the meds wash through my body, clean out the junk, and sooth the heaving and groaning chest. It's time, and so I've bit the bullet, the whole bloody gun (where did bite the bullet saying come from anyways?) and we start IV on Thursday. The earliest appt. they can get me for an out patient is Thursday for a picc line. I could have gone in to hospital today on the ward with a bed, and gotten a picc line in today and drugs started, but it is just to risky going in to hospital, in case I catch something else. There have been too many cases of people catching cepatia (a horrible bacteria that can have devastating results in people with CF) from being in the hospital. It is just not worth the risk...so I will wait three days, unfortunately to start. I'd rather start today, and get three days under my belt, to start feeling better, to start getting on with all the things I have planned, but c'est la vie.

It's really aggravating and sad that I feel so vulnerable by going in to hospital. I feel so threatened and not safe at all because of all the outbreaks and the horrible condition of the ward. I won't go in, and so as a consequence I have to wait three days to get started on medicine, when my lung function is so low, but to me the risk is just to great. I wish the ward was newer, and in better condition. I wish someone would swoop in with some money and be able to give the ward all private rooms, and our own bathrooms. Bacteria and germs love moist areas, like bathrooms, and the ward has us sharing bathrooms with other CF people...it is insane to me. They also have us stay on the same floor as people with cepatia. Out in BC I've read in some hospitals, they don't even have them stay on the same floor, let alone the same wing, like at my hospital. The cepatia CF's and the non cepatia CF's are on separate floors out in BC. Our ward is so run down, that one time I was in the hospital, a few years ago, my toilet overflowed the whole entire ward, and the nurse says to me, oh just use the washroom down the hall, and I had to say to her, I'm MRSA positive, I can't use the same washroom as other CF's. She was like "oooo right". It's that kind of care that is sometimes demonstrated, which scares me...what else goes on to cross spread germs and bugs between patients, so I just could not take the risk, and will wait the three days, ugh.

Three days is a long time to dwell and worry about getting a picc line in. The last couple times I've received one in, it has not been a pleasent expeirence. Here is some good news though, I got FIVE, that's right FIVE adavant pills to get me through the process, as well as a stronger strength of it. I usually get advant to help calm my nerves. It's for anxiety and when I take it, it just makes "everything okay". Last time they gave me a weak little tiny baby dose (it wasn't my regular doctor) and so I tried to take another pill half way through the procedure, and I dropped it on the floor...ARG. I was not a happy camper especially since the whole ordeal took an hour and a half, I was completely aware of everything, and I hated the doctor doing it. I've had that doctor 4 times before putting my line in, and each time has been disaster, a heart palpitation after he put it in, sticking me three, four, million times, does not seem confident, makes weird not funny, almost insulting jokes, and people tell me he is the head of the department. I tried to give the guy the benefit of the doubt the first 3 times I had him put a line in me...but the 4th time I had him, and it took him an hour and a half as well as both arms, AND when another doctor says to him, "would you like me to take over" (insinuating that he was taking way to long and going about it the wrong way) so on top of our previous history, me and this doctor, that was it, I called it quits on him...sorry dr. you've had it, I red flagged myself and you will never touch me again....So on Thursday if I see him, I'm either going to OD on my adavant pills, or I will just have to flat out refuse to have him, it's too traumatizing. I swear he makes me sicker from the experience for days after wards.

Anyways I'm not going to get discouraged, because these IV's will help me feel better. It's pretty frustrating when the littlest thing makes you get out of breath, so it will be nice to feel better on some meds...
It sure does feel like since November I've had some really bad karma coming my way...but I guess that just means it can only get better.
These IV's will make me feel fantastic again, I'll continue to work out, and while I'm at home doing these IV's I'll get to research my road trip out east with some girlfriends, my trip to California with my mom, my trip to Washington with my cousin, my trip to Barbados with my best girlie NM, and my trip to Ireland in September...All of course are works in progress, but hey I've got to have something to research for the next few weeks on IV! ha

I've been reading these books by Jeannette Walls, and I'd like to think I have gumption! So I've been handed a couple batches of lemons these past few months, I'll just pour myself another glass of wild jumbleberry juice please.

roller coaster ride....

this has by far been such a roller coaster ride. one day i am feeling great, the next day short of breath, the next day back to feeling great....
today is a good day. I was able to work out, and it was much much easier then yesterdays workout, when I could barely get breath down in to my lungs. My oxygen levels were higher while working out and I was able to go for longer without stopping.
I got up and started work this morning, and did all the trivial stuff without getting out of breath (like picking up my fat cat...although lately she has been really slimming down, people have even been commenting on how slim she is getting! we've been working hard on her diet haha)
soooo...who knows if I will get to bdos...it's so hard to tell because it is such a rollar coaster ride. I have to remember that is has only been four days on this drug. I took my fourth one this afternoon..it's not a miracle worker and needs time to work, so by Sunday it should be nice and solid in my system and I should have a good idea of whether I get to slip away to bdos for two weeks.
I keep looking up the weather high of 28 degrees feels like 36...yes please.
I talked to my friend who I'm going with, for half an hour on the phone yesterday, instructing on what to pack, she wondered if she should bring jeans, it's hard to grasp just how hot it is in barbados unless you've been there...but you will never need jeans in bdos. EVER. Even when I wear my floor length maxi dress, I am hot, so I wear it on 'cooler' nights.

Anyways if we dont' get away on Wednesday we'll just post pone it for six weeks, till march..and as my friend said, she's not sick of the winter yet, but by march we'll all be sick of the winter and it will be just that much nicer to get away to a hot place.

I was taking photos of my jewellery all day today. Finally have figured out all the new options on my camera. I'm a pro with aperature speed, shutter speed, and white balance...it only took me three days and 10 hours of trial and error to learn! ha
Anyways here are the positive things so far since being on these new drugs
-insulin dependence is down, meaning infection is down
-mucus is back to yellow and very easy to cough up, meaning bacteria growth is down
-easier to work out today
-not short of breath today when doing little things and exerting myself
-have energy and worked on business today
-no longer feel exhausted

here are things that need to change before i feel comfertable going away to bdos
-need to stop falling asleep at night at 9 oclock on the couch, while watching tv...means i am still tired and fighting an infection when i can't keep my eyes open
-need lung function to improve
-need white blood cell count to decrease

keep sending out those positive vibes, they're working!

quote of the day

When odds are one in a million, be that one.

the dreaded IV's....

so today was clinic today, my white blood cell count was up to 19, from last week 16...i am still so short of breath. I didn't get to do a lung function test because the machine would not fit in to the room that I was given...but we did not need it anyways, we figure it would be the same, or worse. My doctor walked in and said...okay I think we need to bite the bullet and go on IV's....double rats and double stinks.
I managed to have one last ray of hope in my back pocket that I had researched. It's moxifloxacin. A drug that some people use in the states to combat pseudamonus, when cipro does not work for them, which cipro has never worked for me. SOO i managed to convince her if I could try this drug for a week, in hopes that by some miracle it works, and I am still able to get on my trip to barbados. I've had the january blahs for the last two weeks or so, and some sunshine would really do nicely to chase those away. But hey, we got trip insurance so it can be rebooked.

So I start this new drug today. My doctor said she can't see me getting horribly more sick by next tuesday, so she is comfertable waiting till then to start IV antibiotics, and giving this oral a chance. She is a little skeptical, because really this is not a common oral drug of choice. I'm a little more optimistic, because my lungs have always been weird and craved un ordinary drugs. Like levoquin never really works for other CF'ers but it seems to most times work for me, as well as cipro seems to do wonders for other CF'ers but it does nothing for me...my lungs have always craved the un ordinary, and are unique, so here's hoping that this oral will be unique enough to help me get on my trip! Alright...taking the first pill now...here goes some major positive thoughts, good vibes, maybe a bubble bath? and definitely some ice cream maple syrup and chocolate chips!

clinic day tomorrow.

tomorrow is clinic. I have been short of breath since Saturday. Today has been the worst. It just feels as if there is such a heaviness weighing on my chest. Doing the littlest things, like putting on my winter boots, leaves me breathless today. My blood sugars are all fine, and there are no other signs of an infection, other then my shortness of breath, and I've been really tired lately. Falling asleep really early after dinner...sigh, so close, yet so far. My trip is only nine days away. I hope tomorrow will tell us more, and they can do something for this shortness of breath, because it's really quite bad. I don't get it, ,the weather is warmer, ugh so frustrating. Send out positive thoughts and vibes that something changes over night and this shortness of breath leaves, and heavy chest goes away!
I'm still managing to work out though, so that's good, although I have to stop more often and let my oxygen levels catch up to normal. We'll see what tomorrow brings...boy what a roller coaster.

List of Meds.

Here is my daily routine of medicine

Morning
18 units of long acting insulin
Acetonal (for bone re growth, once a week, on empty stomach)
Ventolin, 2 puffs
Pulmozyme mask nebulizer (makes mucus thinner, so I can cough it up on my pep)
wait half an hour then do Tobi Mask nebulizer (tobi, is an inhaled antibiotic, to try to keep infections and bacteria at bay without going on orals or IV's)
2 adek tablets (vitamins)
12 mg of prednisone (for inflammation)
1 Vfend, 200mg (for aspergillus)
1000mg vitamin C tablet (to ward off colds)
3 tablets of evening prim rose oil (for everything good enhancing)
Septra (when have an infection, oral antibiotic, on it currently)
Losec (for heart burn)
Tobi mask with pari pep (total time saver) nebulizer
4 puffs 200 symbicourt puffer
2 puffs 12 pulmicort puffer
Work out for 30 minutes

Afternoon

2 puffs ventolin puffer
5%hypertonic saline mask (clears mucus like no tomorrow. genius invention. salt water in a mask)
2 puffs pulmicort puffer (when the weather is cold, or i feel that i cannot breath, like this past week, combats inflammation)
Vitamin D tablet (for bone growth and development)
1 tums (a cheap way to get calcium in to your body, plus they dont' taste as awful as the other calcium pills)
1 tsp of lemon fish oil

Evening
Septra (oral antibiotic)
Levoquin 750mg (oral antibiotic)
4 puffs symbicort
2 puffs pulmicort
1 losec 20mg
200mg Vfend
500mg azithormycin
10mg of vitamin k
Tobi and pari pep mask nebulizer

Enzymes throughout the day with all meals so I don't get stomach aches and can absorb the nutrients
As well as fast acting insulin with all meals and snacks, except for breakfast

oooo my gosh...that looks like sooo much pills...it really does not even seem that much to me when I am taking them all...but putting them all down on paper...wow haha
I really am a little pharmacy...I should have been a pharmacist

two weeks baby!

In two weeks time I will be sitting on an airplane flying to my beloved home of barbados! I cannot wait. I totally think it was my asthma and inflammation acting up that made me so SOB (short of breath), because since uping my pulmicort on sunday, my SOB has decreased incredibly. Working out today was way easier then Sunday and Monday, I could actually get breath down in to my lungs, instead of struggling to breathe. Maybe it has helped that it has also warmed up a bit outside!
Also I started lemon fish oil the liquid last week, it's suppose to do wonders for inflammation, here's hoping. Also the liquid is suppose to be more effective then the tablets apparently. I also started prim rose oil tablets yesterday. They are good for insulin absorption, acne, and inflammation! Hopefully these will help!
All in all a good day! (and i'm not just saying that because endorphins from the treadmill are running through me! ha)

finally some good news!

lung function is up!!!
I'm back up to .79, from .74 last week...it's not .83 like I was at the end of November, but it's a start! This cold air is really takin' a hit on my lungs. I have upt my pulmicourt puffer to try to combat my asthma cough. My white blood cell count last week was 17, this week it's 16, going in the right direction! (under 11 is normal, but since I'm on a steriod, prednisone, I hover at around 13) I lost a little bit of weight, I'm now down to 113, from my original 116....but I like sitting at 113, I don't feel heavy or bloated or water retention from the prednisone, like I used to. I am going to try to gain back a pound for clinic next week though, just as some insurance weight, bring on the ice cream maple syrup and chocolate chips. mmmh.

You have no idea what a relief it was today, when I blew that .79 liters of my lung function. I've had a pretty rough two months, on and off orals, and with personal things happening, and I just really needed that number to increase, without going on IV's. I was not ready yet to commit to another 3-6 weeks of IV's. I'd better knock on wood just in case something happens in the next week or so...although I will admit, I was, looking forward to getting some adavant, this drug they give me to calm me down before I get my picc line put in...it just makes "everything okay" haha...today is a turning point, boy am I glad I kept working out every day even though I felt really sick this past week. Working out has been the best thing I could have ever invested my time in.

Also another great news, my blood pressure is FINALLY down. 120/80 back to it's normal. phew. That was totally so weird, how for the past two months it was super high every time at clinic.
So game plan is to stay on these drugs, go back to clinic next week, and figure things out...yay it looks like I might get to Barbados after all! My lungs need a break from this cold air, my legs are itchin' to start Caribbean dancin' and my pallate is thirsty for some rum punches! cannot wait. also it's suppose to start warming up tomorrow, so hopefully the harsh crispness air will dissipate and my lungs can breathe a little easier, 15 more days!!! ah.

short of breath...17 days.

i am so short of breath today. putting on slippers was an effort..SLIPPERS...for goodness sakes. gesh.
I was resting at 94-96 oxygen this morning, and I thought everything was going to be super that day. but then this afternoon I got really short of breath and my oxygen was resting at 84-90....the only thing I did differently from yesterday to today, was take this natural herb drink respiractin. I had missed it for a few days, and then as soon as I take it today...I start to go all wonky. My blood sugars are pretty solid and under control, my mucus is thin...no other signs of infection except for this awful shortness of breath. Today i am also very tired and my eyes are puffy? what happened between yesterday and today. CF is so wonky.
I also went back and found out when I started respiractin, december 6th, 2009. Dec 7th, i went to clinic and had my first lung function decrease in 5 months...my lung function ahs continued to decrease ever since, and since dec 7th my blood pressure has also increased...maybe it's just a coincidence but i'm going to quit taking respiractin and see if things improve.

17 more days till barbados. i hope i hope i hope so much we still get to go.

anxiety attack...18 days

I think the meds are starting to work. I was whistling while making lunch today...always a good sign when you can suck in enough air and go about your lunch making duties. My mucus is like non -exsistant today and bright yellow. Here's to hoping these orals are enough to at least tide me over till I get back from Bdo's. It would be nice to avoid IV's all together till the summer. I woke up with an anxiety attack the other night, I had to check to see if my contacts were out, I had to get up and check my oxygen, I had to check my blood sugars...I had to check everything, something was not right, and I was starting to panic. I did not like this feeling at all....I then began to think that something was wrong with my lungs and I would stop breathing...I have a wickedly wild imagination that often runs away on me (although has helped me in my business creativly as well as drama program in my younger years...during the night with an anxiety attack, wild imaginations are not cool)...Finally I was able to fall back asleep after doing all those things and reading for a bit...

The book I'm reading now is set in the late 1800's about a woman suffering from tuberculous, or consumption as they called it. There is a description that really hit home for me. It made me think of what others see when I cough or someone else with CF coughs what it must be like for the other person watching through their eyes... "It was terrible. It was one of those times when the coughing was so violent, it was as though her lungs were tearing themselves apart in their attempt to escape her breasts. Phlegm and vomit - thin streaks of bloody tissue with it. she coughed and coughed and then her breath became so ratty and weak I thought she must faint, surely, if only for a moments relief"...yikes welcome to the world of a coughing attack described to a tee.
Another interesting point in this book was that the woman has to travel to Egypt to get away from the cold weather. "Lady Duff Gordon will not survive another winter in England.I would never have thought that one could die from the weather, no matter how miserable and grey it might be, but another winter will murder my lady."
Even in the 1800's they knew enough to send people to warmer climates for lung disease. I think we got it right with Barbados...this past week it has been exceptionally cold. Every time I go outside the coldness creeps into my bones and my lungs seize in their breath intake. This -10 feels like -20 weather is not working out for me anymore...18 days till Barbados.

day 2...20 days....

okay so it's day 2 of meds. a little less tired, but still tired... oxygen reading at resting back up to 93, phew. still short of breath though...hopefully it will pick up soon.
I got a new camera, so here is a picture of med cabinet...more of a pharmacy in home....haha
Played in the snow for an hour taking photos and playing with all the features. I am LOVING the new camera.

day 1....21 days....

day 1 of orals...coughing up blood has stopped. good sign. still very very tired. fell asleep on car ride to get hair cut (which by the way is uber cute...just in time for bdos, i hope!) sooo i have cancelled all my plans for this week, and just going to rest, work out (which was really hard to do today...could not do all 4 running sprints, could only do 2 minutes twice during the 25 minutes, with 1 minute runs compensating...oxygen has been wonky today, but I guess that's to be expected with an infection. Hopefully tomorrow more improvements, it is still a little early since I have had only like 1 pill of each, after 5 days I'll know for sure if these babies are working. send out positive thoughts that they are!! here is my new hair cut for barbados haha...picture the beach...a bather, a sun hat, and a rum punch in hand!

a little bit of good news!

Totally forgot about the good news at clinic today! they did my 3 month hemoglobin? (sp. not sure what the exact name of the test is. weird i know, since i'm always so up on the doctors lingo) anyways, it's the test, they do every three months on diabetics, to make sure your blood sugars are under control, low and behold I'm perfectly normal. (6.8%!, they want diabetics to be under 10, and non diabetics are under 7, and I am under 7! yay) This is great news, since I try so hard to take care of my diabetes. I am always checking and poking and prodding and trying to make it perfect. So I'm glad that that has showed that I am trying my hardest and is reflected in the numbers game! This is good news, because it means that diabetes will not be affecting my body too negatively, since it seems that I have it all under control. yay! So today wasn't ALL a bad day...hah

clinic day...

what a horrible day at clinic.

bad news after bad news after bad news....yet we still get this from the doctor "you two [my mom and me] looked so relaxed and enjoying yourselves...left over from vacation?"
I guess we just look nice with our tans still..and maybe it has come to the point where nothing phases us?
We've taken so many beatings over the years...one more thing added to the list...it's okay I guess.

I got a bone density scan done today. Osteoporosis is a secondary disease to CF, just like diabetes is....as if CF isn't bad enough, all these secondary diseases come in to play...anyways turns out my bones suck compared to the last test a year and a half ago..I can contribute a lot of it I think to prednisone. This steroid seems to bring on osteoporosis and diabetes a lot quicker in the CF population then if you weren't on it. Lucky me...I got both of them. Diabetes last april, and on the cusp of having osteoporosis this january. I start a new pill for it. Luckily, it's only once a week. I am also going to add weights to myself while I walk on the treadmill's backwards (for my thigh muscles), the only way to prevent/stave off osteoporosis is diet and exercise with weight baring things. Since I'm so tiny, running/walking on the treadmill is not enough, so i'll have to add in some weights. I think I have it in my spine...maybe it's just my imagination but my lower spine has been killing all day today after I got that news ha

Another bad news bears....my lung function is down to 0,74 litres. major bummer! I cannot even believe it. Last time it was 0.78, and the time before that, it 0.83. I have not been 0.83 since the cold weather came it seems. I am starting septra and levo, two oral antibiotics and hoping that it will clear me up. It seems I have an infection, since my white blood cell count was 17.2 (normal is under 11) as well I coughed up blood two days ago...meaning bacteria is growing and festering and disturbing and irritating my precious lungs.

22 days till barbados....please let these orals work. Please let my lung function go back up...I was going soo good there. I even was able to increase my running program, I am now up to 2 minutes of running with fast walking inbetween x 4...total bogus that my lung function is down. It's so frustrating. I wanted to be 0.90 liters by Christmas...ah. well I go back in two weeks, and maybe the two oral antibiotics combined, with the continued working out (I don't believe that it has done nothing for me, I do feel so much better since starting, despite the numbers...although it would have been SOO nice to see the numbers increase)...also it would have been nice to not have my bones go wishy washy on me...well i guess you could say it would have been nice for a lot of things to not happen....

Also they are concerned about my blood pressure, it was 130 over 100 the last two times in clinic...wuh wuh. what's that about?? I'm usually rock solid at 120 over 80....

shoot this is not a good start to 2010...okay well enough complaining...tomorrow is another day. exercising, hair cut, starting antibiotics. It will get better. Also I guess here is some good news...I DON'T have osteoporosis yet...just border line...so there is something positive I guess...right? I mean I could be totally over the line and full on osteoporisis, but i'm not, so thats something to look good at, and I'm not feeling that sick, that I feel like I need IV antibiotics, despite how low my lung function has dropped, so theres another positive...so hopefully these orals will work....just 22 more days and then I'm back to where CF is not even an issue...Barbados baby. Anyways time for dinner...and movie...tomorrow will be better.

snowed in...6 month anniversary

I have been snowed in all day. It has been a blizzard outside. I caught up on Eva's blog. She lives in BC and is waiting for her second lung transplant. She's only 25 years old. There was a documentary filmed about her process going through the first transplant. It is an amazing documentary and can be seen online at http://www.cbc.ca/video/#/Shows/The_Passionate_Eye/ID=1333883430.

Here is another story written about her as she waits for her second lung transplant.
http://www.globaltvbc.com/video/index.html?releasePID=aa_ZcOk03m9ZIKWCT0Tla3Wt7bkQ1tP2

She doesn't sugar coat it...which I like...sometimes people ask me, well should you be telling people that...? but I think I'm not going to sugar coat it for other people either...I'm the one going through it...not them.

Today was my 6 month anniversary of working out. 6 months wow. I cannot imagine not getting on the treadmill now. It has become part of me. I don't think I have ever stuck with exercising for as long as this before. I'm really quite proud of myself. I just feel so much better, stronger, healthier. Maybe my lung function has not improved in numbers, but I know other things have improved. I feel stronger, I have more energy, I'm less short of breath, and walking is not a problem. My legs used to get sore before everyone else, now since I walk/run 2 km's every other day I am the last person to complain about my legs hurting on outings! Nothing like going for a lung transplant assessment to scare ya into exercising eh! ha

I did...I can't believe it.

Yesterday January 1st, 2010.....I RAN FOR TWO MINUTES! I reached my goal. I ran for two minutes at 4.0mph with an incline of 2.5, four times with my work out and I did it again today. It has taken me about two months to work up to 2 minutes, but hey, I never even could do that when I had lung function of 50%...so way to go me!
It is just almost a sureal feeling knowing that i reached the goal of running for 2 minutes straight. So in total each time I am working out I am running for 8 minutes, walking fast at 3.4mph for 15minutes, with warm up and cool down 3 -5 minutes.
Today was a another great day, because for the first time in about two months, I actually lowered the liters of oxygen required...which is odd because I totally thought I would have to raise the litres since I'm running for longer, and the longer I run the lower my oxygen drops, but nope, I guess my body is able to absorb more oxygen on it's own. yay! Great way to start off 2010 eh? Good sign, that great things are to come.
Also have one more trip planned for 2010, Ireland?
So far Barbados, Washington, Aus/NZ, and Ireland...phew. Better get planning! ha

looking back over a year

so it's 2010...i'm kind of sad and happy to leave 2010 behind...sad because for five years, now someone so dear to me is no longer part of my life, and happy because 2010 is going to bring a whole ton of new adventures and opportunities for me.

January of 09 brought a new roomate at University for me. My third roomate went away to Sweden on an exchange, a new one moved in, who had an interesting out look on life, and I definitely took a lot from him.

February brought an amazing vacation with my cousin and aunt and mom in Barbados
February also brought me starting prednisone...and almost a year later I am still on. I was 103lbs last Feb 09, I am now a healthy weight of 115lbs.
February also was the month the doctors told me I should consider going for a transplant assessment since despite rigorous and constant IV's my lung function would just not improve over the last two years...

March brought me closer to finishing my business plan.
I started voriconazole for my apsergillius, this has been a savor drug as well as prednisone, because I have not had a coughing attack/fit where i have thrown up since this...i have not thrown up in 9 months from a coughing fit....amazing, considering before these two drugs I was throwing up every week from the attacks.

April brought me paratitis ...my face blew up to the size of monica geller in a fat suit...no one knew what was wrong with me...i thought i was having an allergic reaction because my face was just sooooo swollen, unrecognizable, so i called the ambulance, it was all very scary, turns out it was just paratitis from having dry mouth (and dealing with diabetes) where bacteria crawled up my salvia glands and then made them stop working...the cure...lemon drops to suck on, to make the glands start working again, and massaging my face....it hurt so much though because my skin was stretched to it's most possible amount

April also diagnosed me with cystic fibrosis related diabetes...April was not a fun month

May brought the CCFF new cast, which inspired me greatly by the talk of the 4 woman post transplant. It also brought me into my tune up of IV antibiotics. May was also the month, I started gutting and cleaning the apartment on my parents house, so I could move in to it, and have some independence.

June was a continuation of May, many doctor appt's, still on IV antibiotics, still tired of weekly dr's appts, still on homecare nursing, still just trying to be a 21 year old girl with a boyfriend, girlfriends, get togethers and a jewellery business to run....all while doing it on IV's. June also was the first time I got a blood gas done in my life (where they stick a big needle in your wrist into your artery, and check your oxygen level) I nearly fainted. It was also the month I realized I needed oxygen for working out.

July was the month I started exercising and made it my goal, my life, my priority. Also was still on IV anitbitoics. This was the month I went for my lung transplant assessment. It was one of the hardest weeks of my life. It was a week where I was tested emotionally, and physically...it was draining, and awful. It was the week I realized how lucky I am to have such a wonderful support system for the day when I do go through a lung transplant and am on the list waiting.

August I was able to stop IV antibiotics after 12 weeks. phew that was a long time...
I went on a wonderful Vacation up North to visit my brother where he was working, with my aunt, grandma and mom.

September brought the decision not to return to school. I wanted to travel while I still could, focus on exercising and my business...there was just no time for school....ha

October brought Halloween. I went to a Halloween wedding, dressed from the 1940's, which was the greatest time ever.

November brought a trip to New York City. November also after seven months, I was able to get my picc line pulled. Freedom.
November also brought me a broken heart... I Never want to return to that again...so I left for Barbados and came back in December.

December brought me new girlfriends who I cherish and have been having a blast with. December brought my 22nd birthday, Christmas and new goals that I'm working towards.
Good bye 2009...hello 2010