to Walt: It is 4:00am as I write this

March 13, 2008

Dear Walt,

We do have a lot in common, except I’m 52 and everyone tells me I’m too

young to be this sick. That doesn’t make any difference as far as I’m

concerned except make it me feel like it’s my fault somehow.

I have COPD as well, but mine is due to chronic asthma I’ve had since I was

a child. We just don’t have strong lungs in my family. I use all sorts of

breathing sprays and I’m supposed to be on oxygen at night, but only use it

about 50% of the time. Sometimes I’m just too exhausted to hook it up at

night. I’m also supposed to use a machine for sleep apnea, but that is

almost impossible due to my skin burning so much when I sleep. Anything

plastic on my face just makes it worse.

Like you I’m not giving up, but there are times when it doesn’t seem worth

the struggle. I keep trying though to find reasons to keep going on and

always come back to my family. The only problem is if I’m not seeing them

very often, my girls both live an hour and 2 hours away from home, then I

tend to wonder why I‘m fighting so hard. It’s so strange because I raised

them both to be very independent, and now I miss them too much. Of course,

I think I still did the right thing on raising them, but it’s harder on me

now since I’m alone so much. Most of my close friends all are in Indiana or

have passed away. I’ve met some wonderful people though through this site

and another PA site and we are as close as you can get being Internet

friends. We all suffer together and it makes it easier to know you aren’t

alone even at 4AM.

I live in Port Richey, Florida, which is about an hour north of Tampa on the

gulf side. I grew up in Naples Florida, spending all our vacations and

summers there. We lived there for several years and then opened our

business up here about 12 years ago. So i know the gulf side pretty well

and have only vacationed to the East side. Where are you and do you think

the weather is helping you? I know the extremes both ways can be rough. I

hate the summers here, but my erythromelalgia makes anything too hot and the

summers are miserable for me. I rarely go out at all and then it’s only

from one air-conditioned place to another.

I hope you can get some sleep and are doing better pain wise. Maybe it

would help your wife to read some of the messages on this site and it might

help her realize just how bad the pain can be for some of us. Just a

thought. Take care, Fran

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