Patient or User?

robysue wrote:

49er wrote:Anyway, speaking of labels, one reason I have decided to no longer disclose my past psych med history, is the fear of unfairly being labeled in the same manner that I feel you were because of certain situations I encountered with doctors.

One of the great ironies in my saga? The psychologist and psychiatrist both said, "Don't just forward the whole medical record to the new docs. Pick and choose the stuff you want to report carefully and limit the disclosure to the non-mood related stuff."

Thanks RobySue, that is excellent advice especially when people don't realize that they have the option to pick and choose carefully what they want to report to the new physicians. By the way, it is just so much easier to ask that all the records be transferred. But that could be the "kiss of death" for so many reasons.

49er

Me? I am a patient, a user, a parent, a child, a worker, a customer, and lots of other things. I try not to allow any of these things to define me as a person. I am a person first. Neither patient or user has negative connotations for me. Have a great day, everyone! (oh and I read your whole post, robysue. I am interested in everything you have to say )

Robysue: {{HUG}}
We are in this XPAP thing together; hopefully it's as good for the rest of you as it's been for me.

RobySue: {{{hugs}}}

I went through a lot of that kind of thing when I hit menopause. Lots of straws on the camel's back. All those "little" chronic issues don't add together, they multiply exponentially to cause stress. It starts to feel like a game of "whack the mole" after a while.

BlackSpinner wrote:It starts to feel like a game of "whack the mole" after a while.

Exactly! And I'm a mole that's tired of being "whacked."

Thanks for the hugs BlackSpinner.

I guess I’m in the minority as far as labels go.

I was diagnosed and prescribed CPAP therapy by a fully licensed medical doctor. I believe that makes me an Apnea Patient.

I use a CPAP machine for therapy, plain and simple. I have taken the time to work with my doctors, and moved from a brick machine to a S9 Autoset for the sole purpose of being able to monitor my own therapy. I’m not afraid to make changes if I see the need. I also know though that I’m not a doctor and when I try something and nothing improves it’s time to call in the professionals.

I’m not bothered in the slightest by a label of patient. I don’t feel guilt or any less self-worth because I am a patient. That would make as much sense as feeling guilty because I wear glasses, and don’t have Superman’s super eyesight.

Roby Sue,

I read yours, too, and deeply sympathize. Details on my end are different, but Oh! I get so tired of being told I have a moral failing, that the problem is all in my head!

I use my ASV; I have not seen a sleep doctor ever -- I was diagnosed from the test and never met the doc.

I've now hit the five year marker on the cancer. But even there, the cancer was a "moral failing," because if I would have just stopped stuffing my face, and lost some weight, I wouldn't have developed the cancer in the first place.

I avoid doctors in general, unless I have to go.

This discussion has become more interesting than I imagined when I posted the OP.

Having been born with a congenital heart disorder (and--it turns out--a genetic disorder that caused it and other issues) one would think that I would have a different attitude because there's no way I could have caused it myself. But that's not the case at all. As a kid when I couldn't keep up with my peers physically, I was told by adults that I was lazy, slow, stupid (even BEFORE my heart surgery, and certainly after when I was supposedly "cured" of the heart defect). (Geez, just listen to the language--"defect", as in I was somehow defective).

Here's the worst one--I have facial dysmorphisms which turn out to be part of the genetic syndrome we didn't know about when I was a kid. All we knew is that I was an FLK (funny looking kid) and not attractive in any sense. But all the magazines and stories aimed at young girls talk about "beauty on the inside" will "shine through". So therefore, I must not have been "good enough", because I was still ugly, no matter how nice and good I tried to be.

So there's a lot here that could make me a victim, someone who is not in control. And when I finally, as an adult, came to the conclusion that none of this was my fault and that I didn't cause these things I had to live with (fairly recently, BTW), it didn't make me more passive in the process--I'm sort of surprised at that. It did allow me to let it go. Not my fault.

OK, let's get on with what I CAN control. And I can control a lot. I control my CPAP therapy, I control my interactions with health care providers. I go in with a totally different attitude than I used to. I'm in charge, not them. Now, if I had something catastrophic that I didn't know much about, I'd be back in their more knowledgeable hands, at least until I had time to research, understand, and take back control. And if I'm ever really gaga, because of dementia, a severe stroke, a devastating illness where I simply cannot control what's happening, I guess I'll be a "patient" again. But until then, I see myself more as an "informed medical consumer".

It's liberating after being a child who didn't understand the medical terms flying around me (my mom was a medical secretary and spoke "medicalese" with the professionals, a sort of code that kept me out of the conversation until I was well into my teens. They would plan and do procedures, I never knew what was coming or what was going to happen to me. It was TERRIFYING.

My own daughter has her medical issues. I make a big point of including her in the conversations, explaining everything at a level she can understand and inviting her choices as much as possible. I expect the doctors to look at her and talk to her, and I try to keep the focus on how she is feeling about what is being discussed. I try to give her as much control as possible.

Janknitz wrote:OK, let's get on with what I CAN control. And I can control a lot. I control my CPAP therapy,

On good days, I feel this way. On bad ones? Not so much. The thing is: I'm almost three years into this adventure and in many, many ways my sleep is far more messed up now than it was pre-CPAP. Yes, I don't experience the same number of apneas every night. But: Insomnia continues to dominate my existence in a way it did not prior to CPAP. Pre-CPAP my longest significant bouts of insomnia were measured in months, not years. The first CPAP-induced insomnia lasted for well over a year. It never fully resolved. The nasty bout I'm currently dealing with is two months shy of its first birthday. So in three years of PAPing, I've been dealing with serious insomnia issues for over 2 years. I had just enough decent quality sleep during the Summer of 2012 to make me know that this crazy thing can make a huge positive difference in my life, but most of the time? It's a decidedly mixed bag. And for most of my 3 year adventure in Hosehead Land, my sleep has remained both fragile and fragmented. And I'm tired of the battles.

And so no, I don't yet feel that I'm in control of my CPAP therapy. Yeah, sure, I control whether I mask up each night. I could play with my pressures if I really wanted to, but pressures much above my current range send my stomach into aerophagia-hell. So I'm tolerating an insidious small rise in AHI that is correlated to an increase in daytime fatigue and a lack of energy. But at the same time, the daytime fatigue and lack of energy are also tightly correlated with a more significant rise in chronic headache pain and an extremely significant rise in TMJ. It's all a Gordian knot. And the insomnia is driven by it all.

I control my interactions with health care providers. I go in with a totally different attitude than I used to. I'm in charge, not them.

It's this attitude and behavior that's gotten me fired by 2 or 3 doctors and has lead to my firing 2 or 3 others before they could fire me.

But until then, I see myself more as an "informed medical consumer".

This is really the phrase that I want to believe applies to me. But I've learned that as much PR as there is out there about how the medical establishment wants us to be informed medical consumers, the real fact of the matter is that most people in the medical establishment (docs, nurses, RTs, DMEs, and insurance companies) don't really want us to be informed. If my insurance cared about me being an informed medical consumer, they would give me a written replacement schedule for my equipment instead of constantly changing the rules and having the DME inform me that "no, I can't get new pillows at this time, but I can get a new (and unnecessary) hose because the hose replacement cycle changed from every 6 months to every 3 months."

Finally I have to bring it up: One of the hardest things I have had to deal with (and I still have to deal with it) are close friends and family who when I first started PAPing, reacted in literal horror at the very idea that I had OSA and had to sleep with a mask. While I craved (and still crave) some sympathy, the outright pity and horror in people's faces when I first was diagnosed was astonishing to me. And it hurt me deeply on a number of emotional levels even while I knew these folks meant well and didn't realize just what they were saying to me and how their facial expressions were looking. It's hard enough to get a diagnosis of something that's not going away; it's even harder when the people around you start to act like you're a freak.

robysue wrote:
Finally I have to bring it up: One of the hardest things I have had to deal with (and I still have to deal with it) are close friends and family who when I first started PAPing, reacted in literal horror at the very idea that I had OSA and had to sleep with a mask. While I craved (and still crave) some sympathy, the outright pity and horror in people's faces when I first was diagnosed was astonishing to me. And it hurt me deeply on a number of emotional levels even while I knew these folks meant well and didn't realize just what they were saying to me and how their facial expressions were looking. It's hard enough to get a diagnosis of something that's not going away; it's even harder when the people around you start to act like you're a freak.

Boy that sucks, Robysue. I haven't experienced that. What I have experienced is people who just change the subject. It's like they either don't know anything about it and don't want to, or they just don't know what to say. It seems that people are either really scared of the diagnosis or else they don't think its a big deal and don't know why I am bringing it up. I am hoping with more public education about apnea that people will be able to have a conversation rather than approaching the CPAP user with horror, as in your case, or by changing the subject, as in my case.

I would be very interested in how people approach others in this forum when they mention that they are using CPAP.

I have mentioned it to friends and find out that they are on PAP too. With others, I have not sensed any negative reactions. (edit: I was frisked at the airport when the PAP swab alerted the TSA. The gentleman who patted me down asked about SA and said he snored and had disturbed sleep. I said that he should check with his Dr. and discuss his sleep issues. I also told him that treatment had helped me immensely.)

As to the original question: I am now a patient (adjective) user. That is I am able to accept or tolerate delays, problems, or suffering without becoming (too) annoyed or anxious. That comes from being left on my own for the first 7 years with no intervention from the prescribing Dr. or my PCP. I love the effects of my treatment. I am lucky that I had no significant issues with CPAP once I started treatment and I have been able to resolve those that did arise with ease.

I cringe when I read about the problems and issues people have. My hope is that all who struggle with apnea can get to a place similar to mine.

The reactions I have encountered regarding pap therapy has been positive from friends and family which isn't a surprise since several of them also use a machine. Where I have not received support, particularly from my family, is regarding my horrific adjustment to pap therapy.

They just think if I take meds that everything will be fine when actually, my issues are quite complex. But they don't want to hear it. A big fat sigh!

49er

I considered myself both. I am a patient with a medical condition. With that said, I do not let others solely dictate my therapy and am active as a participant, i.e., tweaking settings, trying different things, etc., therefore I am also an XPAP user.

I am a little ornery, if someone expresses shock about my having to wear a mask at night,
I gently steer the subject to, "--it's not as bad as diabetes;
and a detailed description on how I manage a painless injection.
Dare to be squeamish around me?

I don't tell anyone about CPAP because I get the "well, maybe if you lost a little weight" response. A weightloss of 65 pounds has not made a dent in my apnea, and it won't change the architecture of my airway, so screw them.

Occasionally my husband will make a joke about sleeping with Darth Vader, so I invite him to go back to sleeping on the couch with the dog because he couldn't sleep through my snoring. Meanwhile, he's starting to snore more himself.