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It has been 9 days since I have been tethered!!! This is a very different way of life. A person is changed forever when they are diagnosed with Cancer, that is true enough, but let me tell you when it is Pulmonary Fibrosis (or any disease that requires oxygen 24/7) life is really, really changed. Example, today I was going out to the movies and taking somethings to Leah while I was at it. I got my shoes and coat on, I got everything gathered in my arms including my purse and started for the door only to realize I was hooked to the home stationary machine, had to unload and start over. Switched the machine to the backpack, gathered everything again and then remembered I had not turned the machine on. Thankfully RC was home and turned it on for me.
Other things I noticed being thethered. The smell, this oxygen has an odd scent, minor headaches (I never got headaches), I think this is due to air going up the sinuses. A runny nose when I eat. What's up with that?
Traps, I am glad I can get to every room in the house with the one hose, but when I least expect it, the hose kinks or catches on something and I am stopped in my tracks. This happens 30, 40, 50 times a day. The hose is constantly kinked up. It was really odd the 1st time I took a shower with it. It seems the cord is everywhere and sometimes simply wrapped around my legs. Amazingly neither of us has tripped on it.
Liquid Oxygen is silent so I have left it on all night in the livingroom at level 4 once and about 1/2 the day in the bedroom at level 2 today. Seems I am always turning it up or down. It should be at level 2 when I am sleeping or sitting quite and at level 4 when I am moving about. Half the time I have it reversed except when I start moving around at 2 I am reminded pretty quickly to turn it up as I can't catch my breath.
If this sounds like I am complaining, you are right I am complaining. This just plain sucks!!!!!!!!!! I know it will get better as I get more used to it and I also know that it could get a whole lot worse quickly. This disease progresses at a different rate for everyone, but for this 1st week it has been a challenge and I did not want to gloss this over. It just plain sucks!!!!!!!!!
I did find a website that has some info on what to expect going forward (http://www.dailystrength.com/) and frankly it scared me a lot. Is it good that I know more, maybe, maybe not. What is the saying Ignorance is Bliss, maybe so, maybe not, this quick progression caught us off guard, we had anticipated it would be a slow progression over time and not a jump forward like it has been, but in reading on this site, this disease is in control and I am just along for the ride. I think I may be in for quite a ride and my family too.
