Patient or User?

[Janknitz]

Curious whether you see yourself as a "sleep apnea patient" (or sufferer) or an "XPAP user"? I see myself as the latter.

"Patient" has negative connotations for me, among them being passive and a victim. That's not me.

Likewise I have a congenital heart problem, but I never think of myself as a "heart patient". I don't even like the term "heart surgery survivor" because even though it sounds strong it gives the whole process of surgery more power than I want it to have in my life.

They are just words, but I'm always surprised at their emotional impact.

How about you?

[BlackSpinner]

Labels are useful for files but not people.
We are not our health issues. We are people who have some issues, some are issues require more care and work but they still don't define us in our totality.

[Goofproof]

A patient is one who is treated usually poorly.

A user is someone using a treatment to make a good outcome, more than likely proactively.

[Elle]

User. I agree with both posts above.

[Wulfman...]

I'm a patient user......

My thoughts:
I "USE" this therapy, therefore I'm a "USER".
I'm probably only a "patient" when I'm in a doctor's office or the hospital. But, I took control of my CPAP therapy from the very beginning, so I don't consider myself a "patient" of this therapy.


Den

.

[-SWS]

I have yet to meet a person in the developed world who is not also a patient. Every one of my healthcare workers also happens to be a patient. It really doesn't bother me to be like everyone else in that respect. I also don't associate being a patient with any negative connotations. When I am in the doctor's office I am clearly the patient. That is precisely the relationship I seek when I want medical counsel. It is not my identity.

Neither word nor circumstances define who I am. Rather I do.


Ah, those old-timers:
viewtopic.php?f=1&t=26724&st=0&sk=t&sd=a

[kteague]

Guess I feel like "whatever floats your boat" works here. The terminology doesn't happen to matter to me. I have a list of medical diagnoses for which I have physician prescribed treatment, so I feel like no matter how I slice it, I am a patient. I worked most of my career in the medical field so the word patient is so very commonplace to me that it doesn't carry ANY connotation other than having a relationship with a physician. For those who find use of the word patient affects them negatively, it's your life, frame it however you feel best suits your image of yourself.

[robysue]

I've not taken the poll. It's too complicated for me.

I apologize in advance for the length of this post. But this question has hit a raw nerve and I'll get something out of writing about it even if no-one takes the time to read it.

Three years ago, I started on this xPAP adventure. OSA was my first serious and chronic "label" since I'd largely ignored my migraines and tension headaches before they started to play havoc with my life in the difficult dark days of my adjustment to PAP. And TMJ never seemed like a label because other than being teased by dentists about chewing through night guards like a rabbit, there weren't any dire warnings about what would happen if I didn't agree to a therapy that has had (overall) a decidedly mixed affect on my life.

Since then? It seems as though the new medical "labels" keep coming and coming and coming. And I'm tired of it: Every time I go to a doc, it seems as though something else is wrong and there's more stuff that I have to do. And I'm only 55 and that does NOT feel "old" to me. I don't look 55 (except for the tired expression in my eyes these days) and in terms of weight, diet, exercise, and blood pressure readings, I should be a very healthy 55 year old.

And yet, in last three years in addition to the OSA (and xPAP), I've had the following list of "labels/problems" diagnosed with the following recommendations for follow-up appointments or therapies:

Chronic migraines. Tried topiramate, lamictal, and depakote and could not tolerate any of them; all of them adversely affected my mood among other severe side affects. (And the lamictal truly made me feel as though I was losing my mind.) Which lead to a pair of genetic tests which turned up anomolies. Which lead to treating the migraines with Deplin (metabolized folate), Riboflavin, and Magnesium.

Chronic insomnia induced by starting CPAP (and dealing with the medication prescribed to bring the migraines under control. Six months of "supervised" CBT for insomnia (which was working) and then fired by the PA who was treating me. More months of continuing the CBT on my own (since it was working), but there's been significant backsliding this summer and I know that I need to get back into doing the hard CBT again, but I don't seem to have the strength to do it anymore.

Mood Disorder (NOS). Got labeled by this by the first sleep doc's PA and the first headache doc/sleep doc #3 for no better reason than I didn't get better as expected and kept asking questions. And it happened when I was struggling with the adverse mood side affects of the topiramate, lamictal, and depakote. Of course it didn't help that I'd get visibly upset when I felt that they were not properly respecting me. Which lead to psychological counseling by both a psychologist who specializes in CBT and is supposedly helping me deal with anger management issues and a psychiatrist who I am grateful to: He's really listened to me, taken some detailed medical history, and has told me that I don't need the mood stabilizers the former sleep docs and former PCP kept insisting that I take. The psychiatrist was also critical in helping me find replacement docs for the ones I needed to fire. And the new docs are much more reasonable about seeing me as a person rather than a collection of diseases/symptoms needing to be treated.

Osteoporosis. The former PCP and his staff kept strong arming me about needing to accept that I had to be on Fosamax or some other bisphosphonate---in spite of my reluctance to go on yet another med with some potentially serious side affects and concern that with only one bone scan that was borderline that I might just be an outlier since I've always had a tiny frame. (The "new" defintion for diagnosing osteoporosis is a statistical definition that automatically makes about 2.5% of the population "osteoporosis patients/sufferers/victims" even if they're tested in their mid-20s.) My pushing back on the Fosamax eventually lead to a nasty encounter with one of his PAs insisting that I be put on Valium to deal with some virus related vertigo. And that lead to me firing the doc. The new PCP is more laid back about the need to treat the osteoporosis this instant. He seems to think that with the borderline numbers, prudent waiting to see if subsequent bone scans pick up a real, ongoing bone loss is a reasonable idea. Of course, I'm supposed to get bone scan number 2 this November, and I'm already dreading it for fear of "bad news"

Glaucoma suspect. Not glaucoma, or at least not yet. But pressure checks every 4-6 months. And I every time I go in, I feel like there's a Damocles's sword hanging over my head. I am super squimish about anything being wrong with eyes. And I simply don't do eyeball things very well. I could never finish reading the "what to do about a speck in the eye" sections in the health texts in junior high and high school. I can't put eyedrops in my own eyes. Heck, when my daughter had two eye surgeries at the tender age of 2 and 3, I had to hold her down while looking away so hubby could put the drops in her eye during the post surgery healing period. I think those were the longest two weeks of my life until I started xPAP. So the idea of being diagnosed with glaucoma and having to start the whole eye drop thing is pretty unsettling to me. Fortunately I am able to pretty much put this out of my mind between the too frequent trips to the eye doc's office for the pressure checks and eye exams.

Severe chronic tension headaches and a return to severe insomnia. And for no particularly good reason that I or anybody else can identify. Things were going pretty good headache-wise and insomnia-wise a year ago. I felt really good--as in better than I'd felt in 15 years or so. And I thought I'd turned a real corner. But things mysteriously started to go south by the beginning of last November and were threatening to spiral out of control by the end of December. They've stabilized in the sense that they're not continuing the downward spiral. But I'm in the middle of a long, hard slog to try to get back to where I was a year ago.

Blood tests in the spring revealed both (slightly) high cholesterol and (slightly) high triglycerides. So there's a new diet that while I know it's good for me, is not particularly easy for me to stick to. Low carbs and low fat together doesn't leave many things to eat that I'm genuinely fond of. And the "easy" changes? By and large they weren't relevant. It's hard to "cut out soft drinks" when you don't drink them regularly for example. But "bread and (unsweetened) cereal" is and always has been one of my favorite food groups. And breads and cereals of all kinds are on the limited list because of the high triglycerides.

And the colonoscopy? A precancerous sisal polyp. Well, that's the positive spin on the news: "The sisal polyp was not yet cancerous." But it was one step/stage shy of cancerous. (Indeed the doc indicated that had another year gone by, the polyp would more than likely have been cancerous, and yes I'm grateful it was caught before that happened.) But the fact that it was "sisal"---meaning flat---means that it's much harder to be sure that they removed all of the polyp's tissue. And I have a "difficult, highly twisted colon." Which means the colonoscopy was "difficult" for the doc to get good clear views of everything. (Fortunately for me, there was no discomfort except for the prep work.) And hence I've got to have another colonoscopy in January. Yes---a follow-up colonoscopy in a mere six months. Just in case the doc didn't get all of the sisal polyp. Just in case there are other polyps that were missed because of the "difficult, highly twisted colon." If no more polyps are found, I'll be put on a three-year colonoscopy interval; but if I'm unlucky and more polyps are found in January, it's not clear if a third colonoscopy will be recommend at six months or 12 months. And these days, I don't seem to be lucky.

And the latest? A prescription for an epi-pen due to another case of very severe "poison azalea". It sounds humorous. And it is---up to a point. Ever since I was 15, I've been allergic to azaleas. I can't breathe when I'm near a blooming azalea, but backing off to about 15-20 feet away immediately relieves the "I can't breathe" problem. But more importantly, if I brush up against an azalea, I break out in a poison ivy type rash. Only this time the reaction was far more severe than the last time I had poison azalea, which was three years ago---about a month before my adventures into dealing with OSA began. Three years ago, I was weeding in my MIL's garden and didn't realize she had two small azaleas. So I was weeding all around them and under them and touched them quite a bit. About 6 hours later, the rash started up. I asked about azaleas and realized what had happened. Took a shower, but it was too late to do much good. However, the rash stayed confined to my body and arms. Still had to take a short course of steroids, but that cleared the rash up and it didn't come back. This year? Hubby did the weed pulling, but he threw the weeds all around the yard and asked me to pick them up. So I did. We both remembered the azaleas, but he didn't think to tell me that some of the weeds he pulled had come from the azaleas and I didn't think to ask. A small rash appeared on my arm the first night after we did "weeding round one." We did "weeding round two" the next morning---just before hitting the road to do the 8-hour drive home. And on the way home, I could feel the rash and HIVES (for the first time in my life real HIVES) growing and swelling. And the hives were on my face and in my ears and affected my lips and my right eye. But not my breathing fortunately. I slept fitfully that night and went in to be seen by another doc in the same practice as my PCP. (Saturday morning "Sick" appointments are a godsend!) My face was visibly swollen and my right eye was clearly being affected. I also had a huge rash that was primarily confined to my arms and neck and the top of my head. I was immediately put on steroids and told to let them know if I didn't get better in a week or so. The first 3 days or so, the rash was getting better. But on day 4 the rash started to come back along with a few minor hives and by day 5 the rash was starting to spread---to my stomach and crotch and thighs. And the ears were again getting itchy and inflamed with hives and rash. So I called the doc's office. They couldn't get me in until the next day. Saw yet another doc in the practice. She took a history and after looking at the way the rash was spreading suggested a second course of steriods. She also spent a lot of time questioning me about how bad the hives were and why I knew it was azaleas rather than poison ivy. And she could see how the rash was still affecting the insides of my ears. (Which apparently is triggering the severe vertigo that I'm currently dealing with.) After finding out just how severe this reaction was, how it had been triggered by touching weeds that had been growing in the azalea and not the azalea itself, and how it had affected my face, although not my breathing this time, she said that it was probably time to get an epi-pen to be on the safe side in case I ever ran into a similar situation in the future. In other words, this allergy reaction was one or two steps below an anaphylaxis reaction, and since these kinds of allergies tend to get worse each time you're exposed, it seemed prudent to prescribe the epi-pen in case the next time is when the body decides to go whole hog and react with anaphylaxis. "Better safe than sorry" so to speak.

I know in the grand scheme of things, all my problems are really rather minor compared to what so many of you have to deal with each and every day. And yet, my biggest problem these past three years is that I have not been able to really come to terms with all these damn diagnoses of things that are wrong with me. Pre xPAP, I went to a doctor maybe 2 or 3 times a year tops. Since CPAP, I have yet to have a month free of doctors appointments. And I'm sick of them. And I'm even sicker of feeling sick. And I am still struggling mightily with the loss of thinking of myself as someone who is essentially healthy and in pretty good shape.

So am I a patient or a user? It depends on my mood. If I'm in a funk about all the petty, but irritating and chronic things that are going wrong with my body and the difficult, but necessary lifestyle changes I need to make to deal with these things, I'm pretty much a "patient victim" with some pretty raw anger over all the multiple diagnoses, including (still) the OSA. If I'm in a decent mood and have plenty of energy (which is rare these days), I'm a PAP user and a proactive patient-person taking care of my body's needs by doing what needs to be done.

[kaiasgram]

robysue, just so you know, I took the time to read it.

Most of my labels (diagnoses) are different than yours, but like yours they "blossomed" and multiplied when I started PAP. Hang in there. You're not alone.

[49er]

robysue, just so you know, I took the time to read it.

I just read it too Roby Sue I am just shaking my head at how you were falsely pegged as having a mood disorder.

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. And can you imagine if I started off in that position and then encountered the situations that you did regarding your treatment? I wouldn't stand a chance in getting any kind of good care.

Back to the original question - The use of the word patient doesn't bother me at all. I agree with KTeague about it not having any kind of connotations.

49er

[RogerSC]

Both...don't have negative connotations being a patient, or especially positive connotations for being an xpap user. I'm an xpap user that's a sleep apnea patient. Or I'm a sleep apnea patient that's an xpap user.

Of course, I'm not either most of my life, most of my life I'm just bumbling along, trying to enjoy myself and help others as I can.

So it goes.

[eeckel]

This summer I had emergency major surgery and spent a lot of time in the hospital. I was a patient. Everything was done on the hospital and staffs timetable. The staff even felt free to casually interrupt sleep to do nonessential things such as take my blood pressure. I experienced the patient role as a loss of personal control and dignity.

User, consumer or even client conotates selecting care after an informed decision making process. That's how I want to interact with the health care industry.

[Julie]

Xpap user - no problem, factual and necessary.

Patient - not so much. When you spend your working life as part of the medical establishment doling out care to 'patients' you can develop some odd ideas about who's who to the point where when it's your turn to be a patient, you want to rebel like mad and not identify at all. It's not rational, but it's the way things are for me to an extent, though it's changed a bit in recent years (not much choice if I want to get help). I don't like being a patient, but I guess it's what I am now when I'm in the MD's office or the hospital clinic. But only then. And I still feel like I'm on the wrong side of the desk.

[Madalot]

So am I a patient or a user? It depends on my mood. If I'm in a funk about all the petty, but irritating and chronic things that are going wrong with my body and the difficult, but necessary lifestyle changes I need to make to deal with these things, I'm pretty much a "patient victim" with some pretty raw anger over all the multiple diagnoses, including (still) the OSA. If I'm in a decent mood and have plenty of energy (which is rare these days), I'm a PAP user and a proactive patient-person taking care of my body's needs by doing what needs to be done.

I read it, too, robysue. And while the specifics are different, I feel like you do in a lot of ways. I spent the first 38 years of my life thinking that all my problems were my fault because I had been told I was lazy and just not trying hard enough, only to find that I have a serious, progressive illness.

And this OSA/Diaphragm Muscle Weakness has just been yet another, albeit pretty darned ugly, thing I've had to deal with.

Like you, I am so sick and tired of feeling sick and tired. At 51, there should be more to life than what I am capable of doing.

User or patient? Both in my book. Like you, depending on the day and my mood.

[robysue]

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."