Reality of My Situation - Time to Face It

[robysue]

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.

And I sincerely wish you and your family a Happy Easter and at least one day where you can focus on the blessings in your life instead of the trials and tribulations.

[Goofy]

Happy A Lot,
I second all the well wishes from everyone else and my prayers are with you!
Hope you have a Happy Easter!

[jbn3boys]

I guess I don't understand what you are asking. What outcome were you hoping for? An upping of your settings?

Can someone else field this for me? I'd really appreciate it as I'm too tired (and sick with a cold) to explain this. No offense to Mawk1 because I realize you haven't followed my saga...

I have read your past posts and like Mawk1 I still don't know what you were trying to communicate to the doctor. If you have muscle weakness due to MD and OSA wouldn't the ventilator be addressing these issues? Do you want a different rate between inhalation and exhalation? I know you are frustrated but your choices are a cpap, an autopap, a bipap, auto bipap or a ventilator with or without oxygen. And I not being flippant, I just don't understand.

I'm not sure I can speak for you, Maddie, but I can try.

First, you have to realize that Maddie is a very unique person We love her here on this forum!!

Maddie has a degenerative muscular disorder. This complicates pretty much everything she does. She also has a weakened diaphragm as well as OSA. She is currently using a NON INVASIVE ventilator. This means she breathes on her own, but at night requires the assistance of the ventilator, much like many of us with OSA require our CPAP or BiPAP. However, the ventilator is more complex than even a BiPAP. There are many different settings involved, not just inhalation and exhalation pressure. There are so many I don't even want to guess at them. If you think of CPAP as step 1, and BiPAP as step 2, Maddie is at something near step 10 (out of 10). She is pretty much at the last possible option while remaining NON INVASIVE.

Most doctors would have given up long ago, and just put Maddie on a full time ventilator with a tracheotomy (if i understand correctly). This would involve a hole in her throat, and a tube attached at all time. She would be tied to equipment at all times, and the ventilator would do the breathing for her. But Maddie has found a doctor who is willing to work with her to avoid that for as long as possible. Actually, this particular doctor is supposed to be one of the best in the nation at helping to keep patients on Non Invasive ventilation. That is why it is so hard for Maddie to consider a second opinion.

However, Maddie is also having a very difficult time with sleeping. She is waking up VERY often, for no apparent reason. This makes for lousy sleep, as most of us know. This has been going on for a long time now. And yes, Maddie does nap during the day. And yes, as part of the progressive, degenerative disorder she has, she tires very easily. This makes it even more important for her to be able to actually get restful, restorative sleep, in my opinion.

According to the data from her machine (if I remember correctly), there was evidence of "something" occurring during her sleep...enough that the sleep doctor wanted to do a sleep study to find out just what was happening. At first, Maddie didn't want to endure another sleep study, due to the fact that the sleep clinic does not have her model of ventilator. LONG story short, she finally decided it was time to have that sleep study, and although the situation was not ideal, she and her doctor felt it was as good as they could get it at this time.

The main reason for the sleep study was to find out what is happening that is causing Maddie to wake up so often during the night. They need to figure out what that "something" is that is causing her to wake up. THAT was the intent of the sleep study. Once that was discovered, then and only then would there be tweaking of settings on the ventilator. Needless to say, that is NOT what happened. And that is why Maddie is so frustrated.

Maddie, please feel free to correct anything that I have wrong. I am just going from my memory, and I didn't sleep well last night

[Madalot]

Maddie, please feel free to correct anything that I have wrong. I am just going from my memory, and I didn't sleep well last night

There isn't ONE thing I need to correct. Thank you SO much for taking the time to explain this for me. I owe you one (or about ten) ...

[Madalot]

My thanks to all that have replied and given comfort and support. I'm sorry I'm not replying individually, but hope you all will understand.

Again, my greatest thanks to jbn3boys for taking the time to summarize my situation for those that aren't familiar. I just didn't have it in me to do it today and I am grateful to you for stepping up and helping me out.

I'm usually very willing and able to write it out, but today...I just don't have it in me.

[Madalot]

Can you take a nap when you poop out in the afternoon?

It's not a matter of "can" but of having to. I cannot function and have been known to just fall asleep when talking to someone. We had company once and I fell asleep when they were visiting. It was really embarrassing. They got insulted and left.

This was never a problem until a few months ago...I was always a bit sleepy, but never to the point where I simply could not function and had to sleep.

If I were getting good, restorative sleep, I don't feel that this should be happening to me.

[Muse-Inc]

Maddie, I am so sorry to hear of all the challenges with this latest sleep study, bummer scarcely begins to encompass it all. I have no idea if this might help you given the nature of what's causing many of your issues but frequent wakeups were wrecking the restfulness of my sleep. I went from profoundly restful 8-9 hrs a night without wakeups to 4-6 wakeups a night...miserable experience because even tho I seemed to fall asleep quickly, the next morning told me I was tired but not especially sleepy, some days OK, some days noticeable dragging through the day. I could find no rhythm or reason for these wakeups and nothing I tried seemed to help.

A group of us on the forum meet monthly to discuss our progress and challenges. A new person joined and shared Eric Braverman's book The Edge Effect with the group. Braverman has been doing brain scans for some time now and has some theories about the 4 main neurotransmitters and what happens when we are deficient in one or more of them. NOW, big CYA here -- check with your doctor before pursuing any of his ideas...oh, and read the book so you can discuss it with your doc. I took the tests in the book and discovered I could use a big increase in one of them. I added a supplement to the tens I already take; in this case, I felt comfortable adding it as it's a standardized extract of a fruit, not commonly consumed. After a few weeks of taking that supplement, my nightly wakeups disappeared and I now typically sleep with perhaps a single wakeup to turn over. I can say that my sleep is once again restful. I'm not listing any specifics as I believe everyone should read the book and discuss it with their medical advisors because my experience may be unique to me. Who knows...while I see connection, it could be simple coincidence that my wakeups have mostly disappeared after I started that supplement. I can say that the supplement appears to have produced profound improvements in my mood, focus/attention, stress resilience, and patience -- I retook several tests and the improvement in my scores was pretty durned surprising. Might be worth reading Maddie, then discussing with your doc who certainly sounds like she know what she's doing.

Meanwhile I wish you a wonderful holilday!

[Madalot]

A group of us on the forum meet monthly to discuss our progress and challenges. A new person joined and shared Eric Braverman's book The Edge Effect with the group. Braverman has been doing brain scans for some time now and has some theories about the 4 main neurotransmitters and what happens when we are deficient in one or more of them. NOW, big CYA here -- check with your doctor before pursuing any of his ideas...oh, and read the book so you can discuss it with your doc.

Thank you for this. Interesting information. And no worries -- despite the recent issues, I still am very much in favor of running everything by my medical team. But this sounds interesting.

[jbn3boys]

Maddie, please feel free to correct anything that I have wrong. I am just going from my memory, and I didn't sleep well last night

There isn't ONE thing I need to correct. Thank you SO much for taking the time to explain this for me. I owe you one (or about ten) ...

Again, my greatest thanks to jbn3boys for taking the time to summarize my situation for those that aren't familiar. I just didn't have it in me to do it today and I am grateful to you for stepping up and helping me out.

No problem, Maddie! I was glad I could help out. And you don't owe me anything! Your friendship is thanks enough!

I'm usually very willing and able to write it out, but today...I just don't have it in me.

I'm just glad you were willing to "speak" up and ask for help. It takes a lot to ask for help. I appreciate that about you!

[Madalot]

I'm just glad you were willing to "speak" up and ask for help. It takes a lot to ask for help. I appreciate that about you!

LOL -- that's been one of the hardest things I've had to learn through this illness. Learning that pride is overrated when you find yourself needing to do something but unable to. I've found so many ways to adapt so I CAN do a lot of things by myself, but in the end, I NEED help and have learned to just ask for it.

I used to get so ticked off when I was getting laundry out of the dryer and some piece of clothing would get to the back of the dryer and I couldn't get it. I'd try tumbling the dryer and sometimes it would come forward, sometimes it wouldn't.

I finally bought myself one of those "grabber" thingies and I keep it in the basket of my rollator -- it's always with me now. One piece of clothing gets caught in the back, I grab my grabber and get that stupid thing! Piece of cake.

Also makes it much easier to get something off the pantry floor if I decide I want something and nobody else is home.

That $9 grabber has been a great little tool to make my life easier.

Yes, I adapt wherever possible, but in the end, I have to ask for a lot of help. I don't have a choice.

[fuzzy96]

so sorry maddie to hear this. sounds like somewhere in the chain someone copped out.
relax and rest abit.
regroup
did you get the raw data??? just a thought but maybe in your spare time you can learn to read it and maybe find the spots where your arousals are. then you'll have something the drs cant shrug off.
i'm sending some good vibes your way
take care and hang around
rick

[Madalot]

so sorry maddie to hear this. sounds like somewhere in the chain someone copped out.
relax and rest abit.
regroup
did you get the raw data??? just a thought but maybe in your spare time you can learn to read it and maybe find the spots where your arousals are. then you'll have something the drs cant shrug off.
i'm sending some good vibes your way
take care and hang around
rick

Thanks, Rick. If I could get raw data, I would be THRILLED to learn how to read and interpret it. Getting it could be the problem. My lab isn't very fond of giving it, or even admitting it exists.

I still say that I am waking up a lot and those arousals, whatever the cause or causes, is making me feel unrested by mid day.

Now, if I could just get my doctor to focus on that and stop this B.S. about supine sleep....

[snuginarug]

I have to ask for a lot of help. I don't have a choice.

This is a huge sore spot for most everybody. All of us, at some point, need help, and it's very hard and very humbling. I have a feeling you are far more independent in spirit than many, so i am sure this has been exceptionally hard. But you manfully (if I can use that expression) step up to the plate and ask for what is needed without complaint.

Take care, and don't be afraid to ask US for help too. It's ok to vent here.

[Slinky]

And, Maddie, most people get a real "feel good" feeling about THEMSELVES when they can help someone else out. Don't ever forget that.

[JohnBFisher]

I wish I could add some words of wisdom here. But I'm fresh out. Just this morning I finally dreamed that I was having problems with my speech. Unfortunately, my brain is catching up with my new reality. I fight slurred speech due to my neurological issues. It's frustrating to have been trained to speak clearly and be unable to do so.

Plus, I've been having more and more problems with sensory overload. I find that going out and dealing with all the sights and sounds tends to wipe me out. I can maybe do two things (go out for a meal and a movie). I will reach overload with just that. But I can tolerate it (mostly). But any more and I will be curled up on the bed in agony (legs and feet will cramp, I will fight pins and needles all over). A nap is the only thing that then helps.

Like you, I am not that old. How long will I be able to handle this? It is so very, very discouraging!

On top of that my dog died a couple weeks back. We had him for almost 11 years. He had unfortunately been abused as a pup. As a result, he was always a bit moody. But we did our best to provide love and care for him. He had been my constant companion for almost every day for those 11 years. Due to his problems, we only rarely boarded him. So, he was *always* with us. We gave him a good life. And he lived a very long time for the breed and size of dog. But I *really* miss him.

Plus, I am dealing with Social Security on Disability Income. Fun, fun!

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

Though I am fresh out of ideas. I offer a simple "poem" that I have sitting on my desk:

I get up.
I walk.
I fall down.
Meanwhile,
I keep
Dancing.

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!