Thursday, July 29, 2010

Emotions of CF

Well let me write this again, it erased my whole blog :(

I had a event happen to me that made me think of the tough emotion/mental feet us cfers deal with. Besides the tons of meds and physio we have to deal with everyday come love. I have been single and on the dating scene for two plus years. I have only had a couple of dates during that time. The most recent date I had was last week. I thought things had went well. We had coffee and talked about a few things, one of the topics was my cf and such. A few days later we chatted and she just seemed to be distant, then next day I got a message that she had found someone else to date, which was fair no worries but then the next thing she said was that it was someone she was more comfortable with. Maybe I just took it the wrong way? But it sounded like cf was something she couldn't deal with. I mean cf isn't just me, ya so I have an o2 hose on my face. But I'm me, I m a person inside.
I think its tough for people to adapt to date someone with cf, it must take a strong person to see past that and see you for who you are on the inside. Which leaves me sitting at home alone at night.
Which in turn gets me thinking about other things. 2-3 years ago I didn't really thing much about my cf, I just went out and did things but now it seems its the only thing that's on my mind. Worrying about coughing, am I coughing more, am I getting sick. What will happen next? Do I need more o2.
Then you have the other thing of the financial end,something that bugs the hell out of me. Seeing as I had to give up my job I've had to go on disability. Well lets say the government is very unfair. They are still basically giving the same amount they did 12-15 years ago when my dad was on it. Have they not noticed that things have gone up since and the cost of living has? It just makes me very sick to my stomach how they expect us to live on a little over $1000 a month? Its basically just added stress to our illness, having to pay each month for our oxygen therapy cause they don't fully cover it....and that's just to breath!
All I can say is I sure hope the lottery pays off soon.

Alright that's all the ranting of the night! just had to get that off me chest hehehehe

Tuesday, July 20, 2010

Too Healthy?

Its been 5 weeks since I finished my testing and Toronto General for lung transplant. The way the doctors talked I would be listed and be on my way to getting new lungs. Like my previous blog it was a big decision to go thru this whole deal. At first I was just forget it im not interested and ive lived a good life. But after talking to post transplanters and reading articles there is a good chance of living past their 5 year expectancy. So after alot of thinking and talking with family I had decided to go thru with it.
Well finally today the Transplant Cordinator got back to me. Not news I would think I really would want to hear. She said I was too healthy at this time, I would have to wait till my health deteriated more and my quality of life got worse. It was abit depressing. I had gone a long way to get to where I am now, numerois government forums, letting my job I love go so I could get onto disability (which barely gives you enough to live on and actually have a life) It wouldnt be so bad if I was more stable financially and I didnt have to worry about my protable o2 tanks running out when out with friends.
So I guess I have to turn a new leaf and deal with what comes, they also told me that a good exercise program can actually improve my lung funciton. I do not know exactly how this can works because I figured there was no getting back your scared and fibrosed lung. So I think I will track down a good treadmill and start running a bit everyday. I would rather do it in my house as I can just be on my o2 concentrator and have it turned up and not worry about running out of o2. The portable tanks just do not last when they are turned up to 8 lol and I dont wanna get stranded o2 less lmao.
So we will see what happens, who know maybe it will work? I would love to hear suggestions.

Friday, July 9, 2010

Ohh the heat has finally left

I use to love summer and the hot weather. But now being in the situation that im in now I can barely handle it and with the high humidity we had it nearly broke me :( I spent 2 days just sitting on the couch in front of a fan. The humidity makes your chest feel heavy and is hard to breath. I found I had to turn up the o2 a little higher too to be comfortable. and sitting around isnt really good for us cfers, its a bad combination doing nothing all day long, it gives bacteria a chance to start growing in the lungs from the muchas that were not moving cause were just sitting.
Ontop of that with the heat I loose all my appetite. So I had to make sure to drink lots of my scandishakes to keep the calories up.
Well now the humidity has broke and its manageable now thank god. Lets hope its a nice cool weekend :)

Sorry for the short blog, I will write more when I have more lol.

Friday, July 2, 2010

Happy Canada Day!

Well it was a nice Canada day. there were lots of festivities around. I came to realize when heading to the local park with my brother to meet some friends that I cant keep up with people now :(

It started off at home in the morning with the usual routine, get out of bed,come downstairs and do my meds. Then eat some breakfast. We then sat around and watched some tv deciding on what to do for the day. The night before we had been out at a friends backyard party, where again I found the limitations on what I can do and what I miss the most....sitting around a bonfire. It becomes a little dangerous when you are tethered to an o2 machine. Anyways back to the story. We decided to meet my roommate,his mom and son down in the Park in Midland (next town over) There would also be a couple of other friends there too with their children. We got to the park to find it chaos, nowhere to park. As we circled the parking lot we finally found a spot. Only it was located way at the back of the rec center. Which entailed a walk to get into the park, not a big deal. Although what killed me was the 2 huge hills I had to climb. When we finally made it down to where they were sitting after 3-4 rests on the way I made it. Where I just sat and collected myself...not looking forward to the walk back to the truck. We hung out for awhile, enjoyed the live band and took in the sun. We left for some dinner and plus my o2 tank would not last to the fireworks. Then I would surely have to be carried back to the truck lol. So there was no way I was gonna endure all the SOB (shortness of breath) coming back for the fireworks. We did however found a spot on one of the side streets where we could see some of them.

I have also come to realize that maybe it is time to apply for a handicap permit. It would make my life a little easier I think.