CPAPtalk.com

Madalot wrote:It's difficult to ignore the bullies.

Madalot, I agree with EVERYTHING you said except this.

• Click on "User Control Panel" in the top left area.
• Click on the Friends and Foe tab
• Select "Manage Foes"
• And name(s) of anyone you want to ignore.

If ANYONE is making you feel unwelcome, unsupported, etc this is well worth doing.

khauser wrote:

Madalot wrote:It's difficult to ignore the bullies.

Madalot, I agree with EVERYTHING you said except this.

• Click on "User Control Panel" in the top left area.
• Click on the Friends and Foe tab
• Select "Manage Foes"
• And name(s) of anyone you want to ignore.

If ANYONE is making you feel unwelcome, unsupported, etc this is well worth doing.

It's a start, but I've found that because people quote a lot, I ended up seeing comments by people on my foe list anyway. So, I just stopped doing it.

You shouldn't have to, but you have to have a thick skin, sometimes, to "play" on this forum. Sad, but true.

It's not just this forum. Any support forum is full of "bullies" (which I think in reality are people that are natural internalizers and that think everyone should be the same).

It *is* odd that someone would say that on a forum designed for support, but I suspect they feel they ARE being supportive, in the tough love sense.

However I don't agree with that mentality in this case, or many others I've seen here. If Monica started off generating reason after reason why she wasn't going to follow through, then maybe. Instead she's consistently attempted to make the best out of a bad situation. Not sure how that equates to whining. Whining is not the same as explaining a difficulty and seeking help.

Oh, and madalot, just in case, I'm not aiming these comments to you or anyone else in particular. I'm only hoping Monica has the strength to see past the negative comments and hoping I can help her rationalize them.

People that assume everyone should be the same: Hmm, doesn't that sound a bit like DME's and mask designers?
Anybody that wants to be a little different; just ruins their whole day!

khauser wrote:It's not just this forum. Any support forum is full of "bullies" (which I think in reality are people that are natural internalizers and that think everyone should be the same).

Oh, and madalot, just in case, I'm not aiming these comments to you or anyone else in particular. I'm only hoping Monica has the strength to see past the negative comments and hoping I can help her rationalize them.

No worries. I get exactly where you are coming from and agree with everything you have said.

Hang in there Yoyomonica!

I am sorry that I came across as a bully. I did not intend to come across that way. I am just giving my honest opinion on things, I am rather rigid in my thinking in some respects and I can sometimes be a black and white type thinker. It is both a blessing and a curse at the same time, IMO.

I had an excellent respiratory focused, brick and mortar DME when I began CPAP therapy. They did things that are IMO, critical. Such as things like, measuring my face offline, by trained experts. I honestly cannot imagine going thru that initial two or three month adjustment phase without offline DME support. That is why I suggested this individual, for now, get their help offline from local medical folk. It is IMO, just plain too complicated to do it from an Internet forum.

I do maintain that a bit of redness on the nose, even a blister developing, is normal and OK during the initial mask adjustment phase. If you use a full face mask, that goes twenty times.

Eric

I am not the least bit sorry for what I said. If any of you think pointing out that not using cpap because of a sore nose is going to dramatically affect your health is bullying then you should look up bullying some time. Especially since I had previously written paragraphs on how to avoid getting a sore nose.

If one of her kids came in and said they were not going to school anymore because they had sore bumps on their face I can assure you they would be told to suck it up, use some cover make up and get on the bus. They would not be told to stay home, school is not important.

Well, there's a continuum of sores on the nose. I've gotten some that were so bad that continuing to put pressure on that spot would assure that I would not be back on CPAP for a loooong time (when using a mask that touched the bridge of my nose was my only option). At that point I had to terminate temporarily for a shorter time, rather than risk being out of commission for a longer time (and sometimes I waited too long to terminate). Obviously people in the best position are those that can wear pillows as well as nasal interfaces, so when they get a sore on the bridge of their nose, they can switch to pillows (and vice versa). But not everyone has that option.

Yoyomonica,

Sorry I haven't had any advice for you, but I've been off the board, except for a few quick replies due to personal problems.

Now I would like to say to you that you are doing right by visiting the DME for another mask, this one is not for you. I did have sores when I started, then had some that were long term (I started therapy in Jan 2000). If I knew then what I know now, I would not have a permanent scar and permanent corneal damage to my right eye. I had leakage into both eyes, several corneal abrasions & one corneal ulcer that ruptured. At the same time I had sores on my nose bridge that bled during the day. Mask choices were more limited back then, and sites like cpap.com were unknown to me then too.

Fast forward to now, I would not accept a mask that isn't comfortable, since compliance is key to therapy and if you are uncomfortable, you probably aren't going to be compliant. I was compliant & it almost cost me an eye, but I'd do it again even though that happened.

I now know to keep trying masks until one works for your needs. If you need any of the gel pads for the nose, PM me, I think I have a spare. If you don't have enough money to purchase masks out-of-pocket, tell that DME he/she HAS to come up with solutions & take names of the masks with you that you want to try. Some DME's only carry one or two brands of masks, if that is the case, shop around for DME's.

I guess to sum it up, keep trying. I'm more than happy to chat with you in PM if that would help, but I do want to help. I know desperation when I see it, and you seem desparate. I remember the desperation, my OSA was categorized as severe, I also have a bunch of other medical problems too. I have RLS, PLMD, Narcolepsy, MS, Fibro, RA, kidney disease, migraines, epilepsy, lymphoma, and other stuff. My point in saying this is that its sometimes hard to get used to a new routine of yet another diagnosis. The good thing about OSA is that its treatable & can reduce some of the other problems you have. It has worked for me, my blood pressure is controled, I don't have heart disease or diabetes, and my energy level is better than my drs think it should be. In short, I owe much of my life & lifestyle to my CPAP machine. We are a team, the mask is just the ball we use to work together.

Hang in there.
Jen