Many Have Been Frustrated/Angry with Me

Maddy,
There are some wonderful posts here and I heartily agree with all of them (well, minus one). If it were not for the fact that I have had my feelings bruised on here more than a few times, I would ask why do you care? But I get it. Any interaction that becomes negative can be hurtful, even when we have no idea who the other person is.
I guess what I most want to say to you is this. YOU are the only person who has to walk your particular path. We can all be sympathetic, offer advice if we feel qualified to do so, make suggestions, ask questions, etc etc etc. And of course that is why we all come here, to learn, to ask questions and sometimes to vent or share or just feel like we are a member of some "community."
I just feel that you have been so open about your journey and probably more people than you will ever know have learned from you. But once again, only you live that journey every second of every day. It is your life and you need have no regret if someone makes the DECISION (and that is what it is, make no mistake) to be angry or frustrated with you. That is their choice. You do not have a choice about the cards life has dealt you. So, please, make every effort you can to disregard those who, as I said before, make the "decision" to become frustrated or angry. That is their problem, NOT yours.
Also, let me add it is exciting to see you on this new path you are taking. I have great confidence in you and your ability to be resilient in the face of challenges.

Jeanette

There was a time I was irritated that you didn't jump in and take control, that was before i spent 6 weeks here looking after my parents and my sister, all of whom have some sort of chronic illness (my sister has some sort of undiagnosed muscle degenerative disease and refuses to have any more tests done) Watching them chose which battle is worth fighting has been illuminating.

Good luck - though things may get more frustrating, taking some sort of control/leadership is beneficial psychologically.

I am grateful to have been allowed to follow your journey.
You have a difficult "row to hoe"; and with all the bumps along the way, I admire your courage.
Patience may be viewed by some as a weakness--but at times it is the wiser choice.
There are many who offer advice (sometimes best suited to others)--not everyone understands your situation.
I see you have trusted your own instincts and benefited by that.
Once again, one size does NOT fit all.

Hi Maddie:

I haven't posted on your thread before and I just spent some time reviewing older posts.
Have you resolved the waking issue during naps yet?

It might be possible to get some useful data by using a video camera to record some naps and then review what you see.
Place a large clock so that it is seen in the images, make sure that the clock is synchronized with you oximeter and try a few naps to see what is going on when you have awakenings.

You could design a hand movement that you make when you realize you are awake so when you review you know for sure.
That will allow you to see exactly what the oximeter is reading, what your pulse is doing etc.

Hang in there. Hope things get better.

Oh my goodness... Now she thinks she is in control...

Quick, rally the troops. We need to do something and need to do it right now...

How about this. We can all gather together and have a celebration.

OK, all joking aside, you have always been in control. It is just that now you have more knowledge and more wisdom to guide you. Life is a journey and we go through it step by step. I must admit that sometimes others may appear to step a little strangely, but as I gain wisdom I generally figure out that my steps are also often strange and who am I to judge others.

I am a firm believer that a change in attitude can improve therapy. However, it is not just the attitude change. It allows you to release your creativity in problem solving, and allows you to gain perspective on what is going on. Many times we get crushed under the burden of the moment. Being in control allows you to set the burden down and find a better way to remove it.

This is very exciting. You know that you have always had all of my support, and I extend it again to you.

Now back to the celebration. I make a great spinach salad with broiled chicken and walnuts and a vinaigrette dressing. When does the party start...

I really do appreciate everyone's support.

to jnk -- thank you for your post and sticking up for me so well with Guest. I really appreciate that. I must admit that I am perplexed by Guest's hostility towards me, but I think you said it very well - it's Guest's problem, not mine.

I started this thread because despite the MAJORITY of people being so supportive, I know there are some (take Guest out of this because I have no idea who that is) that have been irritated by my "methods" (if you will) of handling my situation. I understand and respect how they feel, but wanted to share that even though it took me a long time to get to this point, my patience allowed a trust to form with my medical team that most patients do not have. Since starting this in November of 2009, I have dealt with 5 or 6 Respiratory Therapists. All of them have commented, in one way or another, how they've never had a more involved or knowledgeable patient before, how I am the ONLY patient they would allow full access to the menus on the ventilator, how they would NEVER allow other patients to do what they let me do, etc.

A major part of that trust was the assurance that I would NOT "dial wing" and would ask before making any therapy-related changes to my vent. By asking my doctor beforehand, a LOT, she came to realize that I had a basic understanding and knowledge of what we are doing, probably because my requests were not radical and made sense to try. I doubt that my doctor allows her other ventilator patients to change their own settings without asking her first. Heck, I bet none of them know how to change their settings or have access to the menus!

I also started this thread in that hope that maybe some that have washed their hands of me and my situation might be willing to try again -- if they have anything to offer that might help, knowing that I now am at a point where I AM willing to try things without having to get permission first.

I am not asking anything at this point, but last night wasn't as smooth as the night before and I'm not sure what to adjust or change to make it better. But I will think about it today and figure it out, trying a couple different things to see if it helps.

There are so many comments that I want to address, but don't have the time today. I so grateful for the support, caring and help I have gotten and will continue to get here. And I will give the support, caring and help back, when I can, to those here that want or need it.

Hey, Madalot, haven't been around for awhile. Just had to add my two cents. No one knows you and your situation better than YOU. Keep the faith and keep sharing your experiences here. I've learned so much from people like you here on this site. Switched sleep doctors, DME, and having surgery next week to open my constricted airway(Osteotomy w/Genioglossus Advan] all because of the knowledge and courage I got from this site and people like you! Felt like I had fallen through the cracks concerning my treatment and kept pursuing possibilities to treat sleep apnea.

JDS74 wrote:Hi Maddie:

I haven't posted on your thread before and I just spent some time reviewing older posts.
Have you resolved the waking issue during naps yet?

It might be possible to get some useful data by using a video camera to record some naps and then review what you see.
Place a large clock so that it is seen in the images, make sure that the clock is synchronized with you oximeter and try a few naps to see what is going on when you have awakenings.

You could design a hand movement that you make when you realize you are awake so when you review you know for sure.
That will allow you to see exactly what the oximeter is reading, what your pulse is doing etc.

Hang in there. Hope things get better.

I wanted to address this post, but was really pressed for time yesterday.

JDS74, thanks for these suggestions. Naps have been problematic lately, mainly because my kids are around and the few times I have tried to nap, something has interrupted it.

I have considered getting a video camera, both for night sleep and naps, but haven't gotten to that point as of yet. IF I go that route, I was planning to have it set up in a way that would show both me AND the ventilator. The ventilator has a large display screen that shows date and time, as well as pressures and a lot of other valuable information. That would be what I would do - if I get to that point.

I have been to several stores to ask about video cameras, taking pictures of the ventilator/bed setup to show what I was hoping to film. I've already got a pretty good idea of what I would need, but it's a bit costly for me right now.

Right now, I've got a lot going on trying to figure out the best therapy myself, plus my neurologist is still working on the leg movement aspect and has given me yet a THIRD medication to try. So, I've kind of put the video camera on the back burner for now -- but still considering it.

Thanks!

I've been looking at solid state surveillance systems. They are available for around $300 and include a recorder that continuously for about 24 hours and then re-writes over for a loop effect. They have 4 channels that can record at the same time and have the camera heads to go with it. These systems have infra-red capability for recording in the dark but the quality is reduced. A small nite lite should be sufficient to improve the quality. Of course, during the daytime, the ambient light is fine for recording.

So, you could have one camera showing the ventilator display while another shows you overall for leg movement data, etc. Both would be in synch so it would be easy to correlate the images.

They record in VGA mode (480x640),

PM me if you would like sources and prices I have found.

Hope things go well for you.

I have not been on this site for awhile as have been very busy but I do think about you a lot and keep my fingers crossed for a solution. I would not worry over the fact a few people are not happy. It is not your job to make anyone happy as it can't be done. There will always be people who don't agree with anything other than their own opinions. Hang in there and I will catch you later.

I have not been on here posting as often as I would like but keep tabs on things from time to time. I have chatted with you online and seen your many threads where you go through some very rough times, often wishing I had some answers. At no time did I find you, or your situation, frustrating other than your not being able to resolve the issues that prevent you from getting a good nights sleep. As I expected, the majority of the posts have been very favorable towards your efforts and please take comfort in the fact that we (I hope I can say that) hope you are making progress.

I can't say if you waited too long to take charge, I did so in my first week of my home trial and have never regretted it. However my simple case of OSA pales in comparison to the things you have endured and I have seen you trying to be patient hoping that the medical professionals working with you would be able to make progress. I am sure I would have done the same thing and have no idea when I would have taken charge so I can not judge you, or anyone else as all our circumstances are different. I fear that in many cases if one's ailments fall outside the nice neat box of "this symptom mean this treatment" then it is as much a case of educated trial and error, in an iterative process, for them as it for us. In the end I do believe that you must be your own health advocate and no one is going to put as much effort into your treatment as you are.

In my case, after keeping detailed summary of my results as well as a bit of a daily diary I have noted some very interesting correlations between my day to day routine and how I actually sleep. I suspect that this is the same for most of us. I have found it especially useful each time to log how I feel before going to bed and upon awakening afterwards for each and every time I sleep or nap. For a while I was logging food and beverage intake throughout the day as well and may return to this again. After looking back and comparing the data trends averaged over 7, 14, 30, and 60 day periods I was able to go back and look at specific issues that were contributing to things. Upon changing some of these, or at least where I could, I then was able to determine if they had any impact after getting more data and going through the same process. I do not know to what extent you log what's going on, but with time and lots of patience you may start to see if any trends become apparent.

One thing I noted in your response about the video was that the unit has a large LCD display. Is there any possibility that this lights up during the night, and/or changes in intensity to any degree and these occurrences coincide with your awakenings? It may be simple and I can not recall if this was discussed before but I though I would throw that out there for thought.

Best of luck with your continued efforts.

Again, my thanks for all the kindness and support. You all are great.

tschultz wrote:One thing I noted in your response about the video was that the unit has a large LCD display. Is there any possibility that this lights up during the night, and/or changes in intensity to any degree and these occurrences coincide with your awakenings? It may be simple and I can not recall if this was discussed before but I though I would throw that out there for thought.

The Trilogy's screen has a screen saver that can be set to black out, which is what I do. Both my husband and I can sleep with it lit up, which I do occasionally if I want to be able to see what's happening immediately when I wake up. Most nights, I leave it to black out and it doesn't light up on it's own UNLESS something is really wrong or out of wack. If I wake up and want to know what's going on (check leaks, IPAP, etc), I have to touch a button to get the screen saver off.