Comments on: Addenda to “Invisible Illnesses”

By: Mary

Mary — Mon, 18 Jan 2010 02:43:07 +0000

I am so glad to hear it. I am fighting that with Daven right now. The topper is he has scoliosis which of course throws everything off balance but doesn’t seem to count when it comes to back and hip pain. Kind of make me want to say WTF are you a doctor or a barber surgeon?

Be safe and be well,

Mary

By: Ernest R Logan

Ernest R Logan — Mon, 18 Jan 2010 02:33:47 +0000

I find that I am functioning much better since starting Cymbalta for fibro. Prior to that, for many years, I got to deal with the “can’t find anything wrong / must be in your head” reponse from so many doctors. That’s another really fun aspect of “invisible illness”. So many of them are so hard to diagnose accurately.

By: Mary

Mary — Mon, 18 Jan 2010 02:10:20 +0000

I understand. When I was still stupid enough to smoke with allergies and asthma, it was all I could do to walk ten feet without stopping. When I did park in handicapped space (with a temp card.) The looks and comments were painful and I so wanted to say, extremely rude things right back to make them feel like heels. It was very hard not to to put it mildly. Instead I wished them understanding through like experiences.

I hope it worked. Should be a lot more compassionate people as a result.

I certainly hope your fibromyalgia is better.

Mary

By: Daven

Daven — Mon, 18 Jan 2010 01:46:10 +0000

Interesting. Have to look into that for Mary. I’m fine with the full face mask thing. She really hates the one on the mouth too.

Thank you for sharing this info.

By: Ernest R Logan

Ernest R Logan — Mon, 18 Jan 2010 01:44:39 +0000

Yes, you are correct. And then there’s the other side of the same coin: “what’s s/he doing using handicap parking? Looks fine to me.” I used to be judgmental like that. I learned my lesson when I developed fibromyalgia.

By: Ernest R Logan

Ernest R Logan — Mon, 18 Jan 2010 01:39:11 +0000

You can get nasal pillow setups with a chin strap to keep mouth closed. Barbara has same issue, and chin strap does it for her. She is using this one: OptiLife Nasal Pillow CPAP Mask with Headgear

By: Daven

Daven — Mon, 18 Jan 2010 01:11:56 +0000

We tried it, but my mouth falls open and negates the whole thing, the air just flows out of my mouth.

Thanks though.

By: Mary

Mary — Mon, 18 Jan 2010 01:07:19 +0000

One thing Daven really didn’t talk about was how depressing it is to be stared at and resented by people who don’t know you have a heart condition, or arthritis so bad that you’d rather cut the offending part off rather than live like this any more. To hear people mutter things like ‘fat slob, loose weight, nothing wrong with him/her” is soul destroying after a while.

My two cents

Mary

By: Ernest R Logan

Ernest R Logan — Mon, 18 Jan 2010 01:05:58 +0000

Barbara and I use Nasal Pillow masks. You can still talk using them. The airflow is still an issue, of course. They are easier to get used to as well. Less claustrophobia issues. Like this: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear