Many Have Been Frustrated/Angry with Me

[Madalot]

I know there are a handful of people here that have been upset, frustrated, angry, etc., with me for not being more proactive in my situation. My decision to be a "good girl" and try to work with my medical team as long as I did has burned some bridges with some of the people here. I'm sad about it, but it is what it is.

Please understand that by working within the limits set by my medical team for as long as I did, I was able to continue learning and in doing so, have earned their trust. By doing that, my request to change my own settings was met with an immediate OKAY.

Did I let it go on too long? Maybe I did, but where I am now is what is important. And where I am now is an educated, involved and now IN CONTROL patient.

I want to thank everyone that has supported and helped me. I would like to name everyone individually, but I'm scared of leaving someone out. I hope that I can continue to ask and get input from here on. I'm going to need it I'm sure as I still have a lot to learn.

I felt the need to express this to the forum.

[BleepingBeauty]

FWIW, Maddie, I see you as a conscientious person in a very difficult situation, and I think you've handled things very well. I'm happy you're able to adjust your therapy by yourself now, but I think most anyone in your situation would have had to exercise the same level of caution that you did when you began this journey.

You get a big thumbs-up from me.

[Madalot]

FWIW, Maddie, I see you as a conscientious person in a very difficult situation, and I think you've handled things very well. I'm happy you're able to adjust your therapy by yourself now, but I think most anyone in your situation would have had to exercise the same level of caution that you did when you began this journey.

You get a big thumbs-up from me.

You're gonna make me cry. Thank you so much for this.

[JohnBFisher]

"Ditto!" on the thumbs up!

And let's face it. Most of us hear do not deal with a complex chronic condition. They do not understand how important it is to learn from your medical team and to build a sense of trust. I do and have always supported you for that very reason. Like you, I've built a good working relationship with my doctor. He knows I will come to see him when I need it. So, he's told me to keep him in the loop and if I encounter problems to be certain to see him. As if I wouldn't. I take my own advice and do keep my doctors in the loop.

Sometimes it is surprising how much it helps. Recently I had an increase in vertigo. Though that's normal for my condition, when I last saw my GP I decided to mention it. She also decided to go through the normal checklist. And guess what? I had developed an ear infection. Due to the peripheral neuropathy, I could not yet feel it. But a course of antibiotics helped knock it down. And the vertigo decreased.

You just never know when keeping your doctor in the loop will help. And it's incredibly important with a chronic condition. So, yup. I fully support how you have undertaken your particular journey. Keep up the good work. And here's hoping you can attain better sleep.

[rosacer]

I understand you very well Maddie.

We know better than nobody how far can we go with our Dr., RTs, DME, etc. we are the ones who speak with them each time. Your case is very special and takes a lot of thinking for every decision I'm sure. I don't blame you at all cause it wouldn't be a good thing to cut all the bridges with your medical care takers.

For sure some times we can get impatient with somebody whom we appreciate and whom doesn't seems to listen to our good intentionated suggestions, but at the end of the day we need to understand too that the last decision pertains to the other person and not to us. I'm confident the people who get disappointed with you will understand because if they toke the time to make suggestions it's because your well being matters for them.

Take care Maddie I pray God guide you to find the good settings or else you need to fix the problems you have been facing.

Hugs

Rosie

[TalonNYC]

Never apologize for learning! Some folks have GREAT doctors, and in those cases you absolutely should listen to them and learn from them. My rule of thumb is this: If the doctor takes the minimal time to listen to my concerns and act on them, then I will follow their guidance every single time.

My own sleep doc never even called back after the diagnosis was over, so I do not count his counsel as valid. My Primary doc, on the other hand; listens to me, bugs me to come in for physicals, offers treatments and takes the (again minimal) time to make sure they're working. I listen to her warnings, instructions and counsel all the time! I wouldn't undertake any medical procedure or change on my own without running it by her, as I know she'll tell me things like "oh, you can change that any time you want" whenever it's safe to do so.

Trust your gut, Maddie!

[Guest]

My decision to be a "good girl" and try to work with my medical team as long as I did has burned some bridges with some of the people here.

You are wrong. That's not the problem. The problem is that you rally a lynch mob every time someone says something you don't like. Apologize for that without excuses; I would be impressed if you could.

[kteague]

Maddie, I think your attempts to work within "the system" and keep your medical professionals your allies was and is quite understandable. Having any sort of extinuating health circumstance can make one ever aware of their vulnerability and want to have more than words from mysterious sources to turn to in times of trouble. I don't think you owe anyone an apology. We always preach on here to take control of your own treatment. That's exactly what you've done by chosing the path you felt was best for you. In my opinion, we have some some people on here whose knowledge I'd put up against any medical professional, but they can't be there for you at any time and in any aspect you might need them. As you've acknowledged, it can be frustrating when someone sees solutions for another but that person can't receive them yet. Sometimes it's just like that. Hopefully there can be a meeting of the minds at another point in time. Wishing you therapeutic treatment!

[jnk]

This board is a wonderful resource. People here very often go out of their way to be helpful. But that does not make it anyone's responsibility to act on any suggestion given by anyone here EVER. Anyone frustrated or angered by that set of circumstances is going to spend some time frustrated and angry, so it is a personal choice to post or read posts, as I see it. Just my take.

Posting a request for opinions involves accepting a certain personal risk of being misunderstood or of being hurt by the communication syles or the information of those who reply. By the same token, reply-posts also involve a certain amount of risk because of the possibility of misleading, stressing, or otherwise hurting the OP. That is how things work in this medium of communication. The benefit includes some risks.

As long as information is exchanged (a good thing, in my opinion) ANYWHERE, people will occasionally get their feelings hurt or be frustrated by or angered by statements by others, no matter how thick anyone's skin is, in my opinion. It is the nature of all human interaction among any group of caring, open people. Trying to accomplish meaningful communication without the advantage of seeing gestures and facial expressions or hearing voice inflection and other in-person nuances magnifies that fact.

@ Guest:

As for the statement to my friend Madalot that she 'rallies a lynch mob every time someone says something she doesn't like,' I would like to go on record here that I disagree with that cruel assessment and assert that the statment made by you communicates more about you, the maker of the statement, than the one whom the statement was made to and about.

@ Madalot:

Madalot, you have been welcomed here with open arms by a sizeable majority, in order for you to ask questions, to get support on treatment matters, to get social support, as well as for you to answer questions, to give technical support, and to give social support. It is my opinion you have done a beautiful job in every respect in all those aspects of forum life.

Maybe a few people don't "get" you. I don't know. Maybe not everyone has "clicked" with you socially. If so, hey, welcome to that club.

I have caused plenty of frustration and anger in other posters, myself, too. But it isn't ever what I consciously set out to do. And I find some comfort in understanding that about myself. I still try to do what I can do and get the benefits I get.

Anyway, I would like to thank you for being here.

@ Guest, again:

Shame on you, Guest. Maybe you got your feelings hurt once by something in the past. Sorry that happened to you. But don't take it out on anyone here. Please. Especially not Madalot. Take it out on me, if you must. But be decent to her. And everyone else. And yourself. Thank you.

*edited to add a "not" that I had left out of the third sentence above.

[carbonman]

And where I am now is an educated, involved and now IN CONTROL patient.

As I said when you were ready to leave,
we have all learned a great deal,
as we traveled along w/you.

You have covered a lot of ground
and learned a great deal along the road,
and in many ways, you are a different person
because of this experience.

I've learned a lot.

Thanks! for letting us ride along w/you.

All things for a reason.
Receive the message.

[JayC]

You have (and continue to) handled a complex and scary personal medical situation with grace and strength.....

yes you have vented (better here than anywhere else!!), you have expressed different emotions...... you have even (I think) said some "Yes, but...." which some could interpret as excuses and not really wanting to solve the situation.

At this point, I see more clearly all you have on your plate...which wasn't clear in the beginning...and wasn't even info you were obligated to share. You have had here an amazing arc of learning, growing in knowledge, and developed strength in asserting yourself with your "team" without burning bridges. I think you will continue to get even better at that.

You are not here to befriend or satisfy readers.... you are hear for support and knowledge. I have seen you apologize where none from you was needed.....but I do *not* recall seeing you be offensive and attacking to anyone.

Trolls or others frustrated/angry with you (not sure where you are getting that from...) are likely frustrated/angry for other reasons and taking it out on you.

In the larger arc, you have progressed....... you took things in, and eventually did what you needed to do for your well being......that sounds like a pretty good model to keep......

Warm regards,
J

[Madalot]

All of you (okay, MOST of you) are incredibly kind. I deeply appreciate the support and kindness, even when I might not always be worthy.

Thank you.

[poppi2]

I read some medical blogs, some for laughs, some to learn.

Doctor D http://askanmd.blogspot.com/ has a new post: What To Do If You're A "Bad Patient". This would be a patient who had been branded by doctors as bad. Doctor D says that "Many 'Chronically Bad Patients' are just people with difficult or undiagnosable illnesses or a personality that for some reason triggers the suspicion of people with MD behind their name.....

"When a patient suspects they're being unjustly labeled as being a bad patient the instinct is to resist. Patients get angry or argumentative. They beg and plead. They lose control of their mouths and emotions. They accuse their doctors of incompetence or malpractice. They behave erratically and refuse to work with their doctors. These desperate attempts to resist only confirm the doctors' prejudice toward them.

"Instead your strategy must be to come across as calm and above suspicion. Try to act as normal and well-adjusted with your doctor as you do with your friends and family. If your doc seems frustrated with you say in the most genuine way you can, 'I know I'm a difficult case, and I realize I'm in the wrong on this. (Take the blame even if you weren't wrong) I'm still new to needing medical help. How can I do this in a way that helps you, doc?'

"I realize this feels like giving in to an a$$hole bully who has mistreated you—and in some ways it is—but if you have an illness that needs medical help and the entire medical system is against you then you might have to play along with our delusion for a while. Sorry!"
----------------------------------------------------

Doctor D's post is not directed towards anyone. However, I do identify with some of the traits he listed. I recommend reading his lengthy post.

For many of the posters on this site, we are still trying to convince our medical team that we want to have an active involvement with our treatment. I had an unsatisfactory appointment with my sleep doc this week. He evaluated my therapy as, "how do you feel?" He seemed surprised when I told him that I do get sleepy during the day. I didn't discover this community until well after I received my dumb brick. When I go back in six months, I will have charts and data from an out-of-the-pocket-purchased data capable machine.

Madalot - I think you accomplished a lot. Pat on the back for you. Earl

[snuginarug]

All of you (okay, MOST of you) are incredibly kind.

Can't please all the people all the time.

Seriously, you have nothing to apologize for. You contribute greatly to this forum and to the chat. You are ever ready to help the new (and the established) cpap'er. You gain from this forum what the forum is designed to give... support, suggestions and information. As several have said above, the people who may feel frustration, are probably feeling that way due to something going on with them, not with you. You are not responsible for that.

I've got my fingers crossed that you will be able to find that perfect setting needed to combine safety with comfort & quality of life. Soon.

[robysue]

Frustrated FOR you? Yes---every time you've had a set back I've shared your frustration with you.

Frustrated WITH you? Of course not!

Your medical situation is far more complex than many suppose and your reluctance to start dial-winging on your own, with or without approval from your medical team has struck me as prudent even though it has directly added to your frustrations through all of this.

The ready acceptance by your doctor about allowing you to start adjusting things on your own is an indication that your medical team really does understand you're the one in the trenches with the machine every night and that you do have a good, solid understanding of your medical conditions.

It's a pity that most folks are stuck with docs who never get to the point of realizing that we, the patients, are not silly sheep who neither know anything nor are capable of learning anything about our conditions.

Best of luck as you start off on this chapter of your medical treatment.