Fully Plumbed

I had my picc line installed. It now the second one I've ever had. This one seems more sore then the other one. After I had it put in I had to go up to clinic so they can start the meds, that is one rule of homecare that the doctor has to give the first dose before they will touch a patient. They both went well and were some I had once last year. Dr T prescribed Coliston every 12 hours and Ceftazidime every 8 hours. At least for today I have to give all the doses but once homecare and the rest of the meds get here they will have the Ceftazidime on an infusion pump so I wont have to be sitting around every 8 hours waiting for a med to run. I will just have to disconnect and run the colostin in the morning and evening which isn't a big deal really.

I have to go back to clinic next Thursday and have blood work and pfts done to see if there is a change, if there is then I will stay on this combo till the new year,if not they will change it on Thursday.

The last couple of days I haven't felt that bad, I have my moments. Especially when I get a coughing spell and it leaves my chest and back sore.

So hopefully the ivs clean it all up and I get my lung function back up. Gonna hit up physio this Monday at TGH. I didn't go last week cause I was not feeling good and was toying with the admit issue. Monday will be the last one till the New Year. It will be nice to have a little break.

I can't believe only another week till Christmas, two more weeks will the end of 2010. Hell where does the time go? I'm not doing anything for Christmas this year. Its not that I'm being a Grinch about it, first I've really hate how they have commercialized it all and force people to go out and spend all their money on gifts and such, I would rather just have all the family together or hit the road to visit family. I did enjoy the cards I got, they were very nice and funny thing the only cards I have gotten are from my fellow cfers lol. I'm not saying its a bad thing at all!

My mom isn't feeling up to making a Christmas dinner, my brother and his partner are going to his partners moms and then they had invited me to my half brothers on the 27th. But its just too much of a hassle with the o2 and staying over night somewhere so I'm just gonna stay home. Hope Christmas next year will be better and be with new lungs! I also haven't really gotten any New Years plans yet either. Man I suck. I just really haven't been thinking about it, I have enough on my mind lol.

So to all that are celebrating Merry Christmas!!!

My clinic vist

Yesterday was a very long day. The drive down was not too bad but the drive home was hell, actually if there was something worse then hell I would say that. I left St Mikes at 4:00 and did not get home till 9:00. It took me a whole 2.5 hours to get from St Mikes to the 401. Damn you in experienced Toronto drivers! There was about 1/4 inch of snow on the ground and they were driving like there was 2 feet. Maybe they should come up here and drive the winter, on roads that you basically don't see the asphalt till the spring.
SO back on track. I did my pft's and they were down which I suspected. They went from 1.04 from last month to .87 so down to 21% lung function again :( So Dr T said it probably means admit, but she said whats with me and Christmas cause its exactly a year since I was last admitted. She said it is a full house and people waiting, said I could go thru emrg but thats a 24 hour wait and she didn't want to do that to me and its really icky down there. Then she said I got have a Picc line put in as outpatient and do homecare. So that is what we decided to do as I have done homecare before and had no problems with it and I still get to sleep in my own bed :) so before she made her final decision she wanted to get some blood work and a chest xray so I was off to do that. When I got back up to clinic Dr T had gotten my chest xray and said there was a little congestion up in the left upper of my lung she said probably from my sore muscles and not being able to clear it. So Friday I have to go down to St Mikes to have a picc line put in and do one dose of iv's up at clinic. Then I can go home.
Another thing she was excited to tell me when she came in was they got paper work from McMaster clinic from a study I had done years and years ago when they were collecting sputum to cuture the different bacterias. They identified the Psuedomonias straighn I have as the Liverpool strain which is the "old" one from back in the 80's She said alot of it was passed around in the cf camps they use to have. She said they have only seen 7 of those strains in patients today so she is happy they have controlled it with all their infection control.
So that is it in a nut shell, I will post again and let people know how things go in Friday.

An update of things

Its still snowing like crazy here in the north country. They still have a snow squall warning up for today and calling for another 20-30 cms of snow ick! I still have pain in my chest and now in my back, almost feels like someone jamming something under my shoulder blade and twisting. I think I have an infection but still not sure, haven't been coughing up much phlegm and when I do its still my light green color. I haven't had much energy, and been getting short of breath. Maybe its just inflammation and irritation in my lungs and pulled muscles causing all my pain and aches. Sometimes I can find that one position to lay where I have no aches or anything and can actually get some sleep.
I called the clinic today to ask for advice, if I should hold off and just come to my regular clinic appt tomorrow or to venture down and go in thru emrg. They said they would like it better if I could just come into clinic. They said that it would be very unlikely that I would see a cf doctor or someone educated in cf in the emrg at St Mikes. So I guess that gives me another day of laying around in my pj's. Not that I really have anything else to do, its cold and snowy out. Ill just watch tv maybe indulge in a big cup of hot chocolate.
Well some of you that read this and are friends of FB seen a post to my status by my ex, it wasn't very nice and I had deleted it. It did have me pretty unhappy that she really doesn't know whats going on lately in my life and figured I was just doing things for sympathy and all the people that commented were only "online" friends and not real friends that I see.
This morning she had emailed me and apologized and I explained to her exactly what I was going thru and that the online friends are my fellow cf friends which in fact I have met in clinic and cause if cf aren't really suppose to "hang out"
I accepted and told her that I don't want to loose her friendship, we did spend almost 9 years of your lives together. So we will see how things go.
I will post tomorrow and let you know how things went in clinic.

Time to Vent somemore

Got my mileage cheque today, Was half of what it should of been wtf? I am so tired of calling and bitching at these government workers. Do they not double check their work. The sheet I fill out and send in every time is pretty much the same people! I can't stand living on this social assistance. No wonder why people go crazy and shoot up government offices. I have enough stress already with things going on. On top of that I get a message to turn in my work shirts. That really put a pit in my stomach thinking now defiantly I have no job left. Also comes the stress of Christmas. I'm trying just not to even think about it. I haven't even put up a tree or decorated the house at all, I'm just not into it. The last few nights I have just laid in bed, not being able to sleep, thinking about anything and everything. Its the feeling you get when you just cant shut your brain down. I lay there wondering will my phone ring? I wish it would ring! At first I didn't think all this waiting would bother me. I just try to keep busy and not think about it. Well now each day I think more about it. Worried now the winter time is here and it never agrees with me, will I end up sick and in the hospital. Don't really feel like going out and doing anything cause it means trying to breath in the cold weather and just resulting in coughing my brains out, what fun is there in that? I have worked hard to get where I am today. I truly do not wanna give it up and throw it away but some days I feel like just saying screw it. I try and stay strong and outgoing and high spirited but its slowly running out. I guess in reality only rich and well off people are allowed to get sick and have to take time out of their lives. Us working class just get screwed.

Winter is here BLAH!

I'm not much of a winter person at all. Maybe if I had some winter sports I took part in. Its just cold and ick, nostrils freezing together. I'm skinny so don't have much insulation for warmth lol. I have lived up in this area now for almost 19 years now (wow where does the time go?) and I have never ridden or been a passenger on a snowmobile. Actually many of my friends don't have one so maybe that's the reason. But I have never had the ambition or wanting to even ride one. Ill stay and drive in my nice warm truck thank you!

There isn't much new, its been 2 days now that I've been on cipro. I'm not coughing up anymore then normal which I guess is a good thing but now I have this pain in the top left of my chest. Not too sure what it is, maybe I just pulled a muscle? So when I do get coughing it starts to hurt. I haven't been getting as SOB (short of breath) but haven't had alot of energy. Hopefully that will pass.

I made fudge the other day but then when I went to cut it up to serving sizes I realized that the nutritional info was all wrong and there was no actual size to go along with the carbs so it was a no go for me....Dan I hope your enjoying my fudge....and no I didn't pack it for you!

I did however buy a digital kitchen scale at walmart for a whole $10 so now when I'm on my candy Bing and doing carb counting I know what the amount is. Most candies give you per piece or pieces but a few I find give you it in grams (40g of mike ikes has 36 grams of carbs) so you cant really count them out but have to weigh them. The one thing im gonna miss the most this holiday season is all the home baking :( unless I have nutritional info I'm not putting it in my mouth! Sure it seems kinda picky but I have had to work hard to get my blood sugar numbers perfect and I'm not gonna throw it out the window, hell Ive even given up beer and liquor :(

Hmm what else is new.... I did go on that coffee date awhile back and enjoyed it. We have been trying to get together again but between my appts,her work schedule and kids its been hard but we will manage. We will see where things go. Well I hope lol.

Which brings me to my next thing, laying in bed and night thinking about anything and everything. I wonder if it is fair to date in the position I'm in now. Like a fellow cfer was telling me I have alot of things going on right now. So wonder if sometimes I'm being fair to the other person, to have to bring them into all this madness and if its fair to them. When dating you suppose to go out and enjoy and explore the world together, go on adventures which as right now down have all the energy or breath for that so usually its something simple and easy going. But as it is she knows all I got thru as she had a best friend in the same position. Which does make things easier, having to educate someone and everything that knows nothing about cf or transplant can get very frustrating and feel kinda uncomfortable doing things in front of. So like I said we will see where things go.

Christmas season is upon us now. I am hoping to find out the physio schedule on Monday for TGH. Orillias last physio is Tuesday Dec 21st and don't reopen till January. Which means for the week and a half I may end up going to tgh for all the physio. Or maybe they are closed too which I'm hoping. I would love to be able to take a few days off and enjoy family. I have been invited down to my brothers in Kitchener on the 27th so would love to go. Which also means possibly arranging medigas to drop a o2 concentrator off and maybe just drag three o2 tanks with me. So we will see how it works out.

I think that's all I gots to talk about right now, time to finish my Timmies coffee before it goes cold hehe.

Lung infection..I dont need no stinking infection!

Its December 2nd, what does that mean to me? It means now I have been on the waiting list for 3 whole months. My phone can ring anytime now lol.
Ive come down with another chest infection, I don't think December likes me. Come December 14th it would of been one year since I was last admitted to 6 Bond at St Mikes. I am truly hoping I don't have to be admitted. And as I read from my other fellow cfers that are getting sick that its a full house with no free beds. They truly do need a bigger ward. It only makes sense seeing as they are the largest CF center in Canada and I do believe I read somewhere the biggest in North America. Yet so few beds. That almost gets me into another rant....but I will share that later and get back on topic. So at the starting of the week I finally broke down and called clinic, left a message and funny enough they called back within an hour...I was amazed. So I described all my symptoms and the doctor put me on 2 weeks of Cipro (ciprofloxacin) which is an antibiotic. I didn't actually get it till Wednesday afternoon after they finally got the script all sorted out and paper work on billing it to the government. I am hoping it clears it up. Tuesday I didn't go to physio, I barely slept and when I did go to sleep and woke up I had a pounding headache. I just couldn't drag my self to Orillia. I did go today. It wasn't too bad, I had to do a slower speed and not as long on the treadmill. My o2 sats are still staying around 94 with exercise and 8 lts of o2. Everything I've been coughing up is still my light green color so that's one good sign that the infection hasn't gotten in bad yet and changed the color (usually gets darker)
So im just taking things easy, trying to stay out of the cold weather cause that just triggers coughing and then my chest and back get all sore. So basically I have prescribed my self a couch and slippers hahaha.
I have to call clinic back on Monday to let them know how im doing, I do already have clinic booked for the 14th but said they may move it to the 7th. So we will see.

Its kinda creepy

I redid my blog page, added some gadgets to spruce it up. One gadget I added was the adsense by google. They post 2 ads on my page and whenever someone clicks on them I get paid. So far im at a whole $1.35 the last time I checked lol. Anyways whats creepy is the ads, one is for pulmonary tests in T.O. The other is for congestion and coughing. Also seen one for debt management and for the new Jeep grand Cherokee lol. Does google actually read my blog and put ad appropriate ads on?
If so...Hey Google whats up?

Kinda off topic but not I guess

Today I had me second Credit Counsel appt. I need to attend 2 of these after I had to go thru a consumer proposal to deal with all my debt. Debt that I could not look after now I am out of work and on a fixed income. So anyways it ended up 2 minutes of talking about that and the rest of the meeting talking about transplant and such lol. The lady was scared cause her partner has COPD (chronic obstructive pulmonary disease) which she didn't know what it stand for so I had to tell her lol. Anyways she was saying how hes gonna have to give up his job as well and get on ODSP. He is gonna require O2 therapy as well. I told her it will probably end up with transplant. Then she said oh hes old they wont give it to him they only give transplants to young people like me. I had to assure her that as long as hes healthy enough and passes the assessment he can be put on the list. That there is alot of older people that come to the pre TX exercise physio.
Then she laughed and told me they don't know what they are gonna do cause they have no benefits or pension.....as she also mentioned "doesn't that sound good considering im a debt counsellor" Then she was asking me how long it takes to get onto ODSP which she was amazed took so long. So anyways I think she felt a little more positive after I left. I told her if she had any questions regarding transplant and stuff that she can call me lol.
Its weird how things happen and people you run into.

Keeping my fingers crossed

Monday was a rough day for me. My alarm went off at 6:30 in the morning and I didn't wanna crawl out of bed. I manged to pull myself together and get up. Went downstairs and started my normal morning routine. Every Monday morning I have to take this pill called Fosomax. Its a bone building pill. Just another part of CF and the pancreas not supplying the body with all the necessary vitamins and such. The only drag is you have to take it with plenty of water. Stay standing and sitting up at least 30 mins (cause it lays in your digestive track it can burn) and not eat for 30 mins....its such great stuff lol. So I take it then do my nebulizer and stuff by the time that's done then I can eat. I leave the house at 9, stop and the local Tim Horton's and grab a coffee for the road. Then stop at the gas station and fill the ol dodge up. Which is always painful with the price of gas these days. Then head my way to Toronto General Hospital. I usually leave around 10, it give me time to get there and relax and have another coffee before physio. But this week I left earlier cause I was scheduled for my quarterly antibody blood sample for transplant. They take a sample of your blood every 3 months. It helps with coming up with the anti rejection drug combo for after transplant. Anyways I find the lab I got to go to and get that done. Perfect still time for coffee...I'm a happy man lol. I wanted to do this before rather then after cause I wanted to get to the 401 before rush hour at 3:30. Driving down there so much I have learned all the times and traffic flows lol its sad.

I went to physio and plugged thru it. Usually when im on the treadmill and bike my o2 is set to 8lts and when done I check my o2 saturation and its usually 97% or so. But it didn't go past 93%

On the way home I had this stupid cough that wasn't really productive just really annoying and made my chest sore. Lets just say I was grumpy when I got home lol. I just wanted to sleep and had no ambition to even cook dinner. I just had a sandwich and a scandishake and some sweets for desert. Took my insulin like usual. Just laid around and watched tv. I always check my blood sugar 2 hours after and it was 8.8 which is good anything 10 or lower is fine 2 hours after.

I finished watching my Monday light line up of shows and was getting close to bedtime. So I checked my blood sugar before having my night snack and bedtime insulin and it was 18.8 I was think what the hell, I didn't eat anything all night how the hell? So I had to adjust with my regular insulin and also take my night time insulin. I was fully expecting it to be high again this morning but it was ok was down to 6.9

With the having blood in my phlegm, coughing and having a sore chest, spike in blood sugar and not having any get up and go all made me scared that a infection was setting in and would mean I would have to check in at club Bond at st mikes lol. This morning I went to physio and plugged thru that, I did alot of coughing and my o2 sats were still low on the treadmill but after the bile they were up. My chest isn't achy anymore. Makes me wonder if I just had some mucus plugged up and I finally moved it. My blood sugars have been fine so far. I will see how I do the next few days and hopefully I wont have to call clinic.....not that they call right back anyways lol.

As I was laying in bed Monday night I was thinking how cool it would be if all of a sudden my phone rang saying Mr Edwards, this is TGH we have some lungs for you. I still dont know what my reaction will be when the call does come.

So keeping my fingers crossed :)

Hemoptysis

Today was my first experience with hemoptysis. To most people it would scare the hell out of them to cough up phlegm that is all red. But with all my searching the net and reading others blogs that have experienced it I felt ok. I did have to ask other cfers on what the outcome of it would be and was assured that it is a normal occurrence with cfers and not to really worry if it is less then a cup full (which it was) but to juet mention it at the next clinic appt. They always do ask me at clinic if ive coughed any phlegm up that was blood so now I guess I can tell them yes.
To those not familiar here is a little write up on my Toronto CF Clinics website: http://torontoadultcf.com/cf-information/hemoptysis

It happened this morning after I got out of the shower. It was not very much maybe three big globs of phlegm....ya ya who knew you could easly talk about what you spit up lol. I think it may have been due to being so productive last night before I took my nebulizer. I am gonna hold off on my inhaled tobramycin till tomorrow night cause sometimes that can irritate it and just stick with my ventolin.
My mom had me call the Tele Health this morning. Now that was fun, first they said it was an hour wait so they could take my number and call me back so that is what I did. The nurse called me back so I explained I had CF and that my phlegm was bloody this morning, she asked if I felt weak or shortness of breath, I told her no I feel fine and that my o2 sats were sitting at 94 and that was good considering I was on oxygen therapy. Then I said it is almost back to green and her reaction was ohhhhh! its green? all worried, I said no that is fine its part of cf then she asked how long I had it. So then I ended up sitting on the phone educating "the nurse" on Cystic Fibrosis. So ya that was fun.
I think I will just stick to fellow cfers and ask them what they experienced.

Peoples reaction

I was in Walmart today getting a few things. Because of where I work or should I say worked, I know alot of people in town. Mostly just customers of the shop. I try just to avoid them to stop with having to go thru all the talk and such. It gets tiring going thru the same speech all the time. So anyways I was heading to the check out and ran right into a customer which at this time could not avoid. So I said hi how are you doing? His reply was hello....what the hell happened to you? So I had to explain the whole being listed for double lung transplant. Then after that comes the discussion of CF. Or they will point at their nose and say whats up with that?
You see I never felt the need to explain to all the customers that I had CF. Quiet frank I figured it really wasn't much of their business. Sure they would come into the office and hear me coughing the odd time and say "ohh thats a bad cough you have do you have a cold" All I would reply with would be no I have this all the time and leave it there. I didn't see the need for them to know my whole life and what I go thru with.
Little kids are the funniest when they see me wearing the o2 they point and say why is that man wearing that? lol so cute :)
I don't mind educating people on CF but some days I just get tired of it.

A nothing to do Wednesday

Today was my day off from all my traveling. It always seems like a long week when I have my CF clinic plus physio at TGH. Clinic on Tuesday went as per normal. My Fev1 was down a very tiny bit nothing to even worry about. My weight was up some more, a whole 117.3 lbs. I'm gonna try and break 120 lbs lol. That will be the first time ever if I do!
Today I didn't do much of anything, slept in till 8:30. Usually I'm up 7:30-8:00. Do my meds then eat breakfast. Then I just crashed on the couch all day. Tomorrow I'm back off to Orillia for physio.
On a different note I'm still messing around with my blog page. I added the AD gadget. Apparently Google will place 2 advertisements on your page and when ever someone clicks on it you get paid. They mail you a cheque, so ya feel free to click away lmao. Although they never did mention what they pay so we will see.

Well the count still goes on, I've now been on the transplant list for 90 days. I'm wondering if I will get a beautiful Christmas gift :)

Just not feeling it.

Its now almost mid November. The infamous Christmas season is approaching,well if you go into the stores they are telling us its already here. I use to love Christmas and looked forward to it. But now getting older and not having my dad around anymore I just don't seem to get the feel of it. Maybe is all the commercialization they try to push onto us all the buy buy buy. I think the true feeling has been lost.I use to like the family gatherings which are now hard to come by cause everyone is spread apart and have their other sides of the families too. So it is so hard if not impossible to get everyone together.
The last few days I just haven't been feeling myself. Things running thru my mind. Another couple of months it will be my birthday, I will be 35...mid thirties. I did not see myself at the position in my life I am in now. I figured by my mid thirties I would be settled down and have a family started. Be working at a job I love. Instead I'm single on disability hoping all goes well and I will get to return back to work. But that feeling that I have replaced, having to find something new to do does upset me. Its just been a sad week for me, just had to get it off my shoulders.
On a brighter note I did get to have coffee with a beautiful lady that ive been chatting with for the last few weeks. Hopefully get to see where things go and what happens. Guess there is always hope!

Let it snow

Its now been 2 months listed. I haven't let it bother me or play on my mind. Just keep myself busy and pluggin away. Im sure when the call does come it will catch me off hand. I'm not really looking forward to the driving to the city in the snow. The 400 hwy can get kinda crazy with white outs and such....should be an adventure. Don't really have much new to talk about. So far managed to stay healthy, well as healthy as I can be for a guy wearing O2 lol.

I changed up my blog background, I like it alot better now. I'm sure I will change it again when I get bored with it.

Anyhoo seeing as I don't have much new to talk or rant about I'm gonna end it here.

Clinic today

Had my monthly CF clinic today and St Mikes. I was surprised at how well it went. Got there about 10:30 and figured as per usual clinic days and just sitting and waiting for hours on end I would just sit downstairs at Tim Hortons and have a coffee instead of getting my coffee and rushing up and being a 1/2 hour early. I got upstairs at 11 and sat in the waiting room till they came and got me to take my weight. Which I may mention was up 8.14 lbs since last month! I believe its cause I have got my blood sugars right in line. It took alot or work but I did it!
I then got showed to my room and there is where I sat for 1/2 an hour before they came and got me to go to the pft lab to do my lung function test. To me I didn't feel like I blew that great but according to the readings my fev1 was up to 1.16 lts which is up from last months .86 lts..whoo hoo another bonus that now puts me up to a whooping 29% lung function from 23%.
Back to the room I went and I sat, played around on the computer a bit then sat around some more. I waited for hour and a half and finally the doctor came in to see me. Wasn't much to say he was happy my numbers were all up, then asked what do I do with my days and spare time seeing as im not working. I laughed and said what spare time. All I ever do is go to doctors appt's. He told me to continue my treatments and such, and don't just give up cause I am gonna be getting new lungs lol. Something I couldn't believe he would say seeing as all the work ive done this past month to get better #'s.
Oh well Ill just continue what I'm doing and see if there more increase next months clinic.

My bucket list

Well this is my bucket list.....or what I would love to do or dreamnt of doing. They are in no specific order. It is just a running list, I may add more later.



-travel to a different unique country

-go on a cruise

-ride the train out to the west coast

-road trip to the east coast

-drive the trails in moab or the rubicon

-skydive

-fish for sharks

-shake hands with a famous person

-travel route 66 and hit all the little diners like Diners,Drive ins and dives

-own a classic muscle car

-get my motorcycle license and a bike

-

Winter will soon be here

Not much new around here, Heard on the radio this morning that there is a chance of flurries on Friday YUCK! Other then that it is just the same ol same ol. Come Nov 2nd it will be 2 months ive been on the waiting list. Things are going pretty good. I am now going to Toronto General once a week on Mondays and then to Orillia Tuesday and Thursday. Its so nice having only a half hour drive instead of a 2 hour and fighting all the traffic.....yes im a country boy! Which ive stated many times before.
I signed up for a study at TGH. They are doing a study on the effects of exercise pre and post transplant. There is not much to it. On Monday I had to do a 6 min walk test (no big deal cause I was due for my next one for physio) and then had to go over to University of Toronto to do a couple of muscle strength tests. Next I have to wear I thing similar to a pedometer for a week pre transplant and a week post transplant. They also meet with me right after surgery,day of discharge and 3 months after.
My walk test went good, I walked alot farther then a month ago and my o2 sat only dropped to 90 instead of 81 a month ago. They also weighed me and im up to 52.8 kg which is up from 49.8 my last clinic a month ago.
I have my CF clinic again next Tuesday so we will see what my PFT's are and if they are up more.

Hoo Humm

Its a cool October day, it is really starting to feel like fall now and the impending winter not too far away. Something im not looking forward to :( Having to clean the snow off my truck everytime I wanna go somewhere, having to bundle up in layers of clothing to stay warm.
I think I must just have the fall blues. Not nice enough to do anything outside, being broke, wishing I was back at work. I stopped in at work today for a visit with the guys at lunch and I dunno it just got me a little depressed not being there or knowing what was going on. Also not having the financial freedom I had. It seems every month im worrying about money and how to get all my bills paid. Odsp does not help things, I still have not received my first mileage cheque for traveling back and forth to the city, really I have submitted 2 and will be submitting my third at the end of the week. When I was traveling it was almost $350 a week out of my pocket, where do they think I can get the money and still live. The government system really sucks! I hope one day I can get back to work or win a lottery. I already have the stress of having to deal with for pre transplant, I really don't need this. I am not one for having to ask for things I have always been self sufficient so it makes it really hard for me. I am 34 years old and shouldn't have to have my family buy me groceries and help out with my monthly bills. I guess it all boils down to the government system needs a total revamp and deal with the cost of living these days its nowhere like it was 20 years ago! Things have changed dramatically and prices have risen like crazy! Yet their benefits don't, if I didn't have to be on it I wouldn't. Im not like some people and just screw the system, buy beer and go to bingo every night. Im just trying to survive and have somewhat of a normal life. I don't want to sit at home and not be able to get out and enjoy things cause I cant afford them. Seems the only thing I can afford these days is a cup of coffee lol.

So cheers I raise my cup lol!

I need a holiday

Today was my first day of exercise in Orillia. It all went well and lets say I like the 30 min drive instead of the 2 hour and traffic fight. I get to drive with my own northern people not the maniacs of the city.
I got the the exercise room...that is once I found it along with a place to park. I ended up parking in handicap with a parking meter. I had a whole mess of dimes in my truck so I just fed a pile to the hungry meter and it gave me over an hour and a half. Alot better then the feeding of $20 bills into the parking machine in the city lol. The only thing is you cant get a receipt from a parking meter but I think I can digest the cost of parking!
Back on track now. I got into the exercise room. They hooked me up to this behemoth o2 tank cause this part of the hospital isn't equipped with hospital o2. I guess they deal with alot of post transplant and surgery people and not people needing o2. They also do not have a large liquid tank to refill my portable. They set me up with all my weighs at one end of the room and let me do my thing. There was 4 other people there all men and I would have to say the age group was mid 60's to 70's and here I am a whole 34 years old. Felt kinda out of place. But non the less they were all very nice and struck up a conversation. After they were all done their things and was just me left in the room pedaling my life away on the bike and the physio dr sitting at his desk. We started talking and he was saying they have had a few lung transplant people from tgh attend their program. He didn't say how many were cf related. Then his next question for me was what all this negative and positive talk was in the cf community. So I had to explain the whole cepacia. This kinda made me question and wonder, I didn't see any latex gloves to wear when on the equipment like at TGH or alcohol wipes to wipe down weights and equipment. Unless they do it after I leave which I am hoping they do.
So anyways it went good and I was on the road home with a timmes in hand. I got home and had to call some RRAP program that ODSP told me to call about getting a furnace for my house. I talked to a guy there that said all their funds were depleted for this year that I would have to wait till next year and asked for my address so he could fill out an application, I told him wasn't that kinda pointless and asked what kind of a waiting time was there. He said well we wouldn't be able to do anything this year for you...so I said again so this is completely pointless cause I need a furnace this year or its gonna be one cold winter. But this guy still insisted on mailing me an application so I said fine and hung up. Maybe he gets paid depending on how many applications he mails out to people? So I called ODSP back cause they said if they couldn't do anything to get back in touch with them and they would do something. So now I have to get 2 written estimates on a new furnace plus one more letter stating my furnace can not be repaired. So now on my other 2 days off I got to arrange for people to come over and give me estimates.
I just don't ever seem to get a break or time to myself there is always something. It seems I am busier now then when I was working its crazy....I need a holiday!

One Month

Well today marks one month of being on the waiting list. Where does the time go? Its funny how the older you get the faster time seems to slip by, does anyone else notice this. I mean look at summer it seems we just started and now its over, the leaves are already changing and falling off the trees. Every time I see a leaf fall off the tree I think on Monty Python and the Meaning of life of the leaves falling off the tree and screaming hahaha.

http://www.youtube.com/watch?v=RYNnF3TjSEw

There is not much new to report. Exercise is going good, this coming Tuesday will be my first one in Orillia so we will see how that goes. Money is starting to get tight care of ODSP and all the traveling back and forth to the city. I still have not received my first mileage cheque, they seem to like to take their time. Its crazy the amount of gas I go thru and the parking fees are crazy. One week cost me almost $160 its crazy (btw that not just parking its parking and fuel)
Well on a better note it seems I have my blood sugars right under control, I think it was a combination of finding a new amount for my long term insulin and exercise. Ive been able to get back to my sugary snacks hehehe as long as everything is labeled so I know exactly what to take for insulin and not guessing.
So I think that's about all for now folks.