Reality of My Situation - Time to Face It

[Slinky]

(((hugs))), JohnB

[rested gal]

(((hugs))), JohnB

Ditto, fifty more times.

[Madalot]

(((hugs))), JohnB

Ditto, fifty more times.

From here too, John. I know how much you struggle as well. I'll keep you in my thoughts.

[DoriC]

Sending you blessings, John! Maddy too!

[jbn3boys]

Gads! This is starting to sound like a country music song!

I'm so sorry for all that you are going through, John. I cannot imagine the heartache of losing your beloved pet, on top of everything else going on.

So, I invite you to the Dance of Life. Though we may feel overwhelmed, though tears may soak our cheeks, let us rejoice in those blessings we do have. Let us rejoice in the chance to help one another. Let us rejoice - against all odds, let us REJOICE!

Absolutely beautiful! Well said, John. Words of wisdom for ALL of us!

[Cindy Lou Who]

Ah Maddie---it's so sad to hear this.

Take some time---every day if possible----just for yourself and do something that you can do and that you enjoy doing and that doesn't leave you too exhausted or tired. That will allow you to focus at least a bit of your precious energy away from anger and frustration and into something more positive. Which in time will let you recover enough to figure out what you want to do from here concerning the diaphragm muscle weakness (and the condition that causes it), the OSA, the sleep doctor, and the silly suggestion of trying the tennis ball trick.

And at a separate time, let yourself be angry without feeling guilty or worried about the anger---at least for a bit. You can't just ignore the anger and frustration and bury it, but you can work through it. But try not to get stuck in the anger though since that's hard on your family

I whole heartedly agree. Get lots of rest and restock your reserves. Do things that bring you lots of JOY and sooth your sanity. Watch funny movies....what ever makes you laugh.

Anger sucks energy and ability out of a person! I say that from personal experience. I got frustrated just reading about your sleep lab experience. Some if it sounded like mine. I'm also too tolerant...seldom standing up for myself in situations that demand it. Especially when exhausted and cannot think straight.
The hard thing about anger and frustration is it gets you noticed but how the other person reacts is often not in your best interest. I'm not saying you threatened your Dr to his/her face (although that might work ) I encourage you to hang tough and hang in there. I hope you have lots of support from family...you sure have it here
Have you kept a journal of your awakenings? Over time a common thread might show itself. It was suggested I keep one and to use colored highlighters for things. (ie. a dry mouth when I woke up would get a blue line.) At the end of each month I would count up the colors and record the tally. That way you could better see what was going on. AND have something on paper (your journal) you can hand that Dr when you have your appointment. The Dr is a scientist...perhaps you have to get scientific with him to get what you need.

Wishing you all the best and rest. Hopefully, in the future, you can look back on this setback and smile.
Cindy

[DreamOn]

Maddie, I'm sorry that you aren't getting the answers you need. I haven't been here on the forum much lately, but I do read threads from time to time so I am somewhat familiar with what's been going on with you lately.

You had talked in another thread about hip/leg pain that makes you feel the need to turn during the night. Is this pain being adequately managed? Is it possible that the pain is occurring more often during the night than you realize, and this may be part of the reason why you awaken so frequently? I know that I woke up much more often (and needed to turn) before getting a good mattress. Now I have a latex mattress with a wool topper, and it really has helped because there are no "pressure points." That may be something to look into. Perhaps it isn't only your breathing disorder that's responsible for the awakenings, and there may be things you can do to optimize comfort. Just a thought to consider at some point. Daytime worries/stress may also be contributing to the sleep problems. You've been having to deal with a lot, I know.

I hope you and your doctors figure it out so you can get the rest you need. In the meantime, take extra-good care of yourself!

[Madalot]

You had talked in another thread about hip/leg pain that makes you feel the need to turn during the night. Is this pain being adequately managed? Is it possible that the pain is occurring more often during the night than you realize, and this may be part of the reason why you awaken so frequently?

I mentioned this to my doctor and they were supposed to be watching for this as a possible cause. My pain in mostly in ONE spot (muscle) and it worsens from sleeping on that spot for too long. Unfortunately, that happens to be the position where I am most comfortable and my breathing is the easiest.

As far as managing the pain, we've got it under as much control as possible I think.

As far as my doctor is concerned, I think she's busy, under a tremendous amount of pressure from the university, and frankly -- easily distracted. I think she knows her stuff and listens, but doesn't always remember everything we talk about.

I plan on giving her a chance to really hear me -- and if that doesn't work (if she's still insistent that I just stay off my back) -- I guess I'll have to make a decision about continuing to have her monitor my situation.

[DreamOn]

I plan on giving her a chance to really hear me -- and if that doesn't work (if she's still insistent that I just stay off my back) -- I guess I'll have to make a decision about continuing to have her monitor my situation.

That sounds like a good plan. If she still doesn't hear what you're saying, rather than cutting her out of the picture entirely, you could inform her that you'd like to seek a second opinion. Not all doctors take that as an insult, as it's done quite often, especially when a case is particularly complex, as yours is. You could ask her for a recommendation, but doctors often support each other's opinions. Perhaps this problem needs to be approached from a different angle, meaning other types of specialists?

You might want to videorecord your sleep at home for a while, to see if you can determine waking patterns or causes. There are ways to do this with a cheap webcam and free software, although I haven't done it myself. There are threads here about that here.

I know that you have the need to turn over during the night, due to the pain, so the tennis ball idea is especially problematic for you. You do need to make sure that your doctor understands that. But you might want to just try it, to appease the doctor if nothing else. If you decide to try that, this is a cheap (maybe free) and easy way to do it.

I made a homemade tennis ball setup to discourage myself from back sleeping. I cut a hole in the bottom of a tube sock, guided an old belt through the sock, put in two tennis balls, and secured the tennis balls in place with three rubber bands. I wore it wrapped around my upper body, just under my armpits, with the tennis balls on my upper back. You could try that, or a small backpack filled with something that will keep you on your side. It may not work very well wearing this around your waist because it would fit into the small of your back. Effectiveness may also depend on how soft your mattress is.

Sometimes we need to work around problems and adapt the best way we can. Especially in a situation like yours, with so many uncontrollable factors due to your medical condition, you need to take control of what you can and let go of the rest. It may help you to put all this aside for a bit and concentrate on more joyful things for a while. I'm sure you're exhausted from all you've been going through. I hope it doesn't seem like I'm trivializing the overwhelming challenges that you face, but something as simple as sitting outside, reading, listening to the birds, looking at the beauty that surrounds us, can really help to give a different perspective of life's problems.

Your posts here have helped so many already, and they will continue to help people for years to come. You have so much to give. I send my good wishes!

[Madalot]

I This is completely off-topic, but you are so good at communicating through words. Have you thought about writing down your life story? Your children may be interested in reading that when they're older. I wish my parents had done that, as I have so many questions about their lives that will never be answered now that they are gone. I would love to know about their parents, their friendships, their experiences during childhood (both of my mother's parents died when she was just a child and my mom lived through World War II in Holland as a young teen), their adult lives, joys and sadness, their views and opinions, etc. Heck, you may even want to publish it (using a pseudonym if you wish). Self-publishing is very easy these days, in both paperback and ebook!

Your posts here have helped so many already, and they will continue to help people for years to come. You have so much to give. I just thought I'd throw out some ideas for a time when you're feeling a bit better. I know that you're exhausted right now. I send my good wishes!

I've actually thought about doing that, but I'm so flipping tired these days that I can't get the motivation to do it. But I have seriously thought about it.

I started another thread (sorry guys) because I did really let loose on my doctor this afternoon because of her insistence about back sleeping. She seemed to listen.

Truthfully, if we can ever get me feeling a bit better, writing the story would be something I would enjoy doing. It's been a ride I can tell you!