maybe it's the shoes...maybe it's the girl?

Today I worked out like a typical normal morning. Since I've been on IV meds though, I've been switching things up a bit inhalation wise. I did my hypertonic saline before my 45 minute work out on the treadmill. Usually the hypertonic saline makes my chest a little bit tighter, and unable to get breath in as deep when I go on the treadmill, making the work outs a little more tough. BUT today my friends, my work out went sooo smoothly. I even increased my fitsugar.com treadmill work out.

I got new running shoes after having my other ones for 2 years. Even though my old faithful runners look perfectly acceptable on the outside and almost like brand new, runners only have a certain amount of miles in them. Clearly I had reached my maximum miles for my old runners. My feet had been aching for the past two weeks whenever I would finish on the treadmill, making me miss some of my work outs for a few days! I was not happy about that. So I bit the bullet, well my mom did (thanks mom and dad!) and outfitted myself with some new Mizuno running shoes.

I wore them for the first time today, and it felt soooo good. I'm pretty tickled pink with them, especially since I was able to go and push myself harder today on the treadmill. Maybe it was the shoes....but maybe it was the girl???

clinic daysssss

Tuesday was a really long and confusing clinic day....I have been avoiding writing this update blog, because it is just such a puzzle. That is the only word to really describe how Tuesday went. Sooo after almost 4 weeks on colliston and ceftazdine, increased energy, lung function, and general well being....everything is still not exactly perfect.
so here are the dilemmas and puzzle....

1st piece of puzzle) I have a hyper thyroid. I went on a hunch when I saw on a sign at a hospital, all the symptoms that you might have from a thyroid problems. Well I started ticking off almost all of them. Just out of curiousity and on a whim, I asked them when they take blood, to test my thyroid, turns out from the blood test, my thyroid is a little elevated (still can't believe I guessed that correctly)

The doctors are not sure though whether it is a "sick thyroid" meaning your thryiod hormone goes out of whack when you are sick, and then gets better when you are not sick. They are not going to treat it because A) it's only elevated a little, and B) the drugs are quite hard on organs and C) it might return to normal on it's own. We're going to re-test in a month and see what the deal is...I hope it goes away...I dont' really want to deal with another thing. Although it would fix quite a lot of these other none CF weird symptoms that I've been having. Perhaps fix my blood sugar levels, since the thyroid controls a lot of your hormones and regulates them in your body....my blood sugars have been soo out of whack the past week, so maybe it is all related.

2nd piece of puzzle) the aspergillious fungus in my lungs may be acting up. I have wheezing in my chest, which I have never had in all 20 years, that they can hear in a stethoscope, which is a new symptom for me. I am also coughing up little mucus plugs and streaks of blood, which this aspergillious fungus is known to present in symptoms.
I have all of those symptoms....the only reason why the doc. hopes/thinks it's not aspergillious allergy acting up in my lungs, is because of my spiking blood sugars, which indicates infection. If it is aspergillious it would mean increasing my prednisone, or going on IV drugs which are really hard on your other organs...my kidneys would take a beating. I do not want to go up on my pred. either. I hate that drug...sigh. so it would be best if it was another infection, because it seems like the lesser of the two evils.

3rd piece of the puzzle) It could be another infection. another strain of the bacteria pseudamonus rearing it's ugly head,which would explain the spiking blood sugars, it could explain my wheezing, and blood streaking....and the hyperthyroid is just do to being sick, and will go back to normal once the infection is gone...?

4th piece of puzzle) my lung function is up to the highest it's been in 8 months, 0.82liters.....23% FEV1 and 1.91 FVC, the highest it's been in a year. sooo you would think it would have dropped lower if I had an infection.....

5th piece of puzzle) Is it a COMBINATION of thyroid problem, making blood sugars spike, as well as an aspergillious allergy, and are we barking up the wrong tree thinking it's an infection...

Sooo this is the pieces of the puzzles that I have to figure out.
Is your brain fried yet reading/thinking about it? mine is....haha

The doctor suggested we do this till next Tuesday, "hope" that it is an infection, since having an aspergillious allergy would suck. So we switched my drugs, to pipp/tazo and staying on colliston.

So far I've been on the new drugs for 48 hours and my blood sugars are still super high. I think they would have come down by now after 24 hours if it was an infection on these new drugs, leading me to believe my hyper thyroid is playing a role in all this and not to be pushed off like the doctors seem to be doing....

anyways I guess all we can do is wait till next Tuesday, maybe it will take 5 days for these drugs to start working and bring my blood sugars down....

What a puzzle to be solved, but the good new is, at least there are viable answers....at least we have some options, and are not left in the dark wondering what is going on, we just have to be patient as we try out the different options. let the waiting game begin!

love bug? nah...no thanks.

Roller coaster rides seem to be my thing lately...emotionally and physically...nothing seems to be a constant. Just when you think you have it under control....it's not.

I totally have the feb. winter blues. Listening to Caribbean music, wanting to be in the bdos sun so badly. Snow storm city today at our house. Had to cancel plans with a friend the roads were too bad.

I miss a lot of things. I keep thinking over the past week about things I should not be thinking about....just along for the ride on this roller coaster. Maybe it is just the feb. winter blues...maybe not though?

I used to think that everyone should have their heart broken once in their life time, builds characeter, makes you learn, humbles you...I totally take that back....no one needs to go through that...because it just takes so friggin' long to get over it...it's the feeling of a missing limb that gets ya even a few months later. Comes in waves though I suppose.

On the weekend we had my cousin and her little babes over for dinner. There is something wonderful about the innocence of children. E is 3 years old and Em is 1 year old. They are adorable. Little people with a pure energy and love about them.

Tomorrow is clinic day. I have no idea how it is going to go....figure skating is on though! go canada go. hopefully a gold for us, after our loss to US hockey team last night. We all dressed up in our Canadian gear and went to a local bar to watch the game. It was really fun, but would have been nice if we got the win! ha

actually extremely disappointed....

So Thursday night I worked out for 50 minutes on the treadmill, while watching parks and rec, and the office...both which were repeats, major disappointment. I must have done something to my feet...because now my feet are sooo sore. this has happened once before. and it is truly annoying. I can barely stand on them without them aching. Kind of feels like I've been standing all day in high heels, and my feet are uber sore the next day. So yesterday, and today I have missed my 40 + minutes on the treadmill and believe it or not I am soooo disappointed that I have not been able to do cardio. After 8 months of working out, it has not just become part of me.
My lungs feel really good today (besides the high pitch whistle cough, darn asthma...it was almost embarrassing at the movies last night, with this whistle cough, sounded like I was calling my dog with a high pitched life guard whistle or something! ha)

I also found out that I should probably invest in some new runners. I have had these runners for 3 years maybe, and for the amount of times I'm working out, I should be getting new shoes every 6 months...maybe that is why my feet hurt a little today. Even though visably my shoes look totally fine on the outside, they still look almost brand new, the inside supports have probably gone since they are so old and I use them so often. So next week off to my favourite town to get some new shoes and visit an old friend for lunch who I have not seen since I took a trip to new york in the fall with him!

avatar

I wish that I could have my own Avatar. As I was watching this movie, and Jake Sully got to run with legs again and how much of a thrill and how amazing it was for him to get legs again, I just kept thinking about getting my own avatar. I kept thinking, ah wouldn't that be great if I had an Avatar and could have new lungs and be able to run too. I wish I had an avatar to give to Eva and all the other cystas and fibros out there waiting for new lungs...hang on guys, we may not have avatars....yet (maybe one day?)...but your lungs will come.
Wishing you a little less pain and a little easier to breathe today.

great news!

Clinic day! Up to 0.82 liters! in two and half weeks! yay! back to baseline! It took me four months on IV antibiotics last summer to get back to where I am now. This new combo of drugs with exercise really seemed to do the trick! (and of course all the amazing postive energy and vibes everyone's been sending!)

I'm still going to do one more week of IV drugs, because for some reason my white blood cell count is elevated to 17 from 14 last week...but i dunno, it always seems to be on a rollar coaster ride. It was 19 when I first decided to go on IV antibitoics and was really sick, and before I even started the drugs, that very day, it dropped to 15 without antibitoics, when I was still so sick...so it seems to just fluctuate like crazy. We weren't really paying too much attention to the cell count because of that. Although my blood sugars are higher that last few days, so I upped my insulin...which is a little discouraging, that would be an indication that infection is not totally gone, coupled with my elevated white blood cell count....my mucus is super thin, and light and non exsistant though, meaning no infection....sometimes I wish everything would be consistant...all the tests and everything pointing in the right direction.
The important part is though that my lung function is back up to 0.82 liters and on my x ray that I did a couple weeks ago, the report compared the old x ray in august 2008, a year and a half ago to this new one, and there is very little difference in damage. Meaning no new horrible scarring...which means in theory with hard work and continuous exercise I should be able to get back to 0.97 liters which I was a year ago...or so I would think? so that's encouraging! I'm so glad the x ray did not show monumentous new damage.

Anyways so great news back up to 0.82. One more week of IV antibiotics hopefully!
Had a great valentines day (all things considered) this year with my girlfriends, and a great family day, hiking on the trail with my dog, brother and parents. Good weekend, good Tuesday! First book club meeting tomorrow evening. Better get back to finishing reading the book! ha

eva, 65 red roses.

I posted back in November a blog about a girl, Eva who has CF. CBC aired the documentry about her going through a transplant process. She got her new lungs, but 2 years later she went in to chronic rejection, meaning her new lungs were failing. Since September she has been waiting for her second double lung transplant. As if one lung transplant is not enough or hard enough to deal with...Eva has had to go through the process of waiting for two...rotten bad luck. You can check out her blog by clicking here.

Today she posted a good bye video as her new lungs have failed her. She thinks she will pass away in a few days... a warning, this video is hard to watch. Eva you are so strong and so brave, and I'm thinking about you, your dear family and lovely friends.




I'm thinking of everyone waiting for a transplant. Keep holding on. You are all so brave.

Cystic Fibrosis is hard. Any disease is hard. But I just have to be grateful, that when our own CF, mucus filled, disease ridden, lungs fail us, instead of just dying and having no more options, when the disease decides to progress beyond repair, we are given a second chance....we are given hope. With the amazing technology and medical world of lung transplants...hope is inspired and hope lives. Thinking of you Eva. Rest easy. Breathe easier soon.

update

I had clinic on Tuesday, and my numbers improved from 0.74 liters, to 0.76 liters. The tech who does my breathing test is very excited because now they have a hand held machine that they bring in to my room, which will hopefully speed clinic up. He tested it out with both machines to make sure they were compatible and his liters were 7.00 liters...are you joking me?? haha mind you he is over 6 feet tall, and has a big chest to fill with air, but he is workin' on 7 liters of air, while little ol' me is workin on 0.76 liters. I think for someone my age and height I'm suppose to have 3.5 liters of air in my lungs...bugger eh.

We were hoping for a bigger jump in numbers, but I have to keep telling myself that it had only been 10 days on these meds. Usually my numbers do not even improve until a couple weeks after I stop the IV antibiotics. My lung function always seems to be the last thing to crawl back up, so the fact that I have already had improvement is very encouraging.

My exercising is going amazing. I've been able to decrease my oxygen liters needed for exercising down to 4 liters. About 10 days ago I was on 8 liters of oxygen at the beginning of my work outs. I'm able to go for longer, and have been watching the TV series Brothers and Sisters (amazing by the way) as I go for 40 minutes on the treadmill. I checked out fitsugar.com and got an exercise program for the treadmill off of that site. It's a really neat site. I now go for 4 minutes at 3.5mph and then 2 minutes at 3.8mph alternating for my work out with an incline of 1.
Just finished my work out, now I'm off for some lunch!

c'est la vie

It is our struggles that give us our beauty...

Times are hard for dreamers...

I watched Amelie today with a friend...one of the great quotes from the movie was
"Times are hard for dreamers" I like this quote.... sad, but a good one. I do a lot of dreaming and planning and dreaming some more.
Amelie was a great little movie. so cute and well done. Definitely recommend it. One person can change your life forever...don't give up the best thing in your life just because your a little confused about who you are. "Failure teaches us that life is but a draft, a long rehearsal for a show that will never play" I really liked how this movie was done. I'm going to look up the director and see if he has done any other movies similar to this style.

This weekend was kind of a sad little weekend...my grandmama had to put down her puppy...not so much a puppy anymore. She's been in the family for 13 years or so...Molly was such a good dog and will be missed so much.
As well my cousin, N is leaving for Australia for a year for teachers college tomorrow. We had a family going away party for him today. I will miss him. What a somber little weekend.
Everyone seems to be flocking to that side of the world these days.

It's been super cold here yesterday and today, I hope that is why my breathing has been a little wonky today and yesterday. I don't seem to do to well when it gets really cold.

Still keeping up on the exercise, 2 miles yesterday, still keeping up on the IV meds, truckin' along. Little tired today, but I think that's because I've been skipping my naps. I have to keep reminding myself that I am still on IV drugs. Even though I start to feel really good, and there fore then start to go all out as I usually would... I have to reign it in and take 'er easy while I finish out these drugs, so I can get back to Barbados!

a feeling of euphoria...

Today is a good day...
Today's band of choice "The Magic" A friend gave me a burned CD of them, and it has taken me a couple months to finally play it...boy was I missing out. http://www.myspace.com/themagiclove

I'm still feeling good...I almost might use the word great?
Here are some more improvements I've noticed...

I did not need an afternoon nap today, despite staying up late watching Lost season preimier (which by the way was fantastic! first hour amazing...second hour a little cheesy, but hey I'll role with it) This means I am used to the meds, and not totally exhausted from the infection that I am needing less sleep. huurrray!

I was bored today...I wanted to go out (by the time I was finished my morning meds, morning nap, working out, showering, eating breakfast and lunch...it was basically time for my afternoon hook up of meds, sooo going out during the day is a little hard) Always a good sign though that the infection is clearing up when I want to be active again and go out.

I've booked up my weekend starting tomorrow evening (I'm finally seeing avitar!)...meaning I am feeling well enough, with enough energy that I want to socialize and go out!

All good signs of improvements...and we're only on day 6 ladies and gentlemen! Usually i don't feel like this until day 20+ on drugs. Last May it took me till July 25th before I stopped IV drugs...that is a long long time my goodness. Too long. This time will be better, faster, quicker, sleeker! ha

Hopefully these meds keep doing their thing, and my lung function will improve more next week. As soon as I get this set of drugs over with (I'm hoping I will only need three weeks on these meds) I am going to washington to visit my cousin, and then Barbados. oooo Barbados...I cannot wait!

I had a really good day today. A great conversation with my gorgeous wonderful spunky girlfriend S. She totally brightened my day, and I cannot wait for our Amelie date on Sunday. I also Skyped my cousin, who we consider each other sisters, since we both don't have any (finally found out how to use video skype...it is the greatest thing ever) it was wonderful to talk to her, and see her, it was almost like I was hanging out in her room with her! Technology is staggering. It's crazy really.
Also if you have not caught Modern Family yet this year, catch it tonight at 9 I believe. It is quite hilarious!

Isn't it nice that on this crazy rollar coaster that I've been on these past few weeks that finally things are smoothing out...I just have this nice, calm, happy, euphoric, pleasant, feeling swimming all around me.

on track! woo

HAPPY DAY
no more oxygen! woo
We seem to be on track with these new meds! woo
I had clinic today and it was a really good appointment. I have only been on this IV combo of drugs for 4 days and already my white blood cell count is down to 13, under 11 is normal, last week when I was quite sick it was 19! I had lost a bit of weight since I was sick, and working so hard to breath, all the calories were being used up to suck air into these lungs, but I managed to gain back some weight this week, always a good sign, that you're getting better! My FEV1% is up to 0.72 liters, 21%...still long way to go to my 0.83 liters...or ideally my 0.94, 28% liters what I was last march! But we're on the right track, since last week I was 19% lung function 0.68 liters.

The doctors are kind of shocked and very encouraged that I have improved this much after 4 days, because if you look back over my history...I take like a month on IV to see any improvement! so here's hoping this will be the right amount of drugs, and things will just keep movin' along. Thanks for all your positive vibes, they must be working! I think I this biofilm research study thing must be a good thing!

I also have not been 94% oxygen resting room air at clinic like I was today, since last April. My FVC% (i think thats what it is) has greatly improved too, which means I'm clearing the mucus, and able to get breath deeper...I think that's what it means...usually I just pay attention to the FEV1%, but the doctor brought up that my FVC? has greatly improved too! soooo next week will be 10 days on this combo, lets hope it keeps on climbing!

Also Lost season preimier is on tonight....good day today or what??? I think so.

4 days in....

4 days on this combination of drugs...colliston and ceftazidine, and here are the improvements, i no longer am needing oxygen at night, as in the evening my resting on room air is 94-97! woo I also no longer feel I need it during the day, except of course with exercise. I'm currently sitting here on room air at 94%. What a relief it is to not be hooked up to oxygen, it really starts to irk your nose after a while, but it was nice that I already had it all set up, so that I could throw it on, when I needed it when I couldn't breathe last week.
I also think it's helped that I've upped my hypertonic saline to at least twice a day, since it gets rid of soo much junk. I hope my numbers will have improved tomorrow at clinic!

I went out for a walk outside yesterday. Went on the treadmill for 35 minutes Saturday and 35 minutes today. Last week I did not even have the energy to work out, it was so difficult to breathe, let alone get on the treadmill. Things are looking up. My appointment is tomorrow...so here's hoping my white blood cell count and my FEV1 lung function will have improved as well. My picc line arm is still a little sore, so I've been taking some advil, but it does usually ache for a good week or so. Also I no longer get out of breath putting on my winter boots...and it's only been 4 days! It has been a really long long 4 days though. I'm pooped since I have to do the meds every 8 hours, so my sleep at night is limited to 7 hours if I'm lucky...napping during the day just is not up to snuff as a good 8 hour sleep at night...
3:00pm med time! Have to go hook myself up!