From Another Thread - A Personal Note

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
monarch22
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Re: From Another Thread - A Personal Note

Post by monarch22 » Wed Feb 09, 2011 7:03 am

Hi Madalot. I'm new here so I don't know the conflicts between people and really don't need to. I read your post yesterday morning and it touched me. I carried it with me all day and I really wanted to respond to you, but didn't really know what to say. So, I'm just here today to say that I offer my emotional support to you and to let you know that you and your family will be in my thoughts and prayers. I can tell by reading your post that you are a kind, compassionate, strong woman. I'm sure that there have been times you wanted to give up, but you pulled strength from somewhere and you kept pushing.

I can see that you have touched many people here. Keep that knowledge close to your heart on those dark days. Although I don't know you except from your posts, I wish I could reach out to you, look you in the eye and tell you that you are not alone and you need to find that inner strength again. As one mother to another, I know you have it in you. Know that I'm just one more person who is supporting your efforts and sending positive thoughts and hugs your way!!

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jbn3boys
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Re: From Another Thread - A Personal Note

Post by jbn3boys » Wed Feb 09, 2011 8:23 am

(((HUGS)))

Please hang in there, Maddy. You are a wonderful person, and I'm sorry you are having such bad days. I wish there were some way we could help you. The only thing we can do is to encourage you and pray for you. Just know that even if your medical situation is difficult, you are still a wonderful person!

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Madalot
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Re: From Another Thread - A Personal Note

Post by Madalot » Wed Feb 09, 2011 1:29 pm

Once again, I want to thank everyone, those that posted, sent a PM or just kept me in good thoughts. Even though I'm not feeling better today (physically), my mood is a bit better so it's easier to deal with.

I think what I may do is go back through some of my old threads from a year ago. At the time, so much that was said was way over my head and I know I didn't understand a fraction of it. Maybe with a year under my belt, I can pick out pieces that might make more sense and maybe help me get a better handle on what's happening or avenues to pursue.

It's a plan. Perhaps not the best plan in the world, but it's about all I've got. Doing nothing makes me crazy and since I spend most of my time waiting on the medical team to get their ducks in a row, my doing anything to keep myself occupied seems reasonable.

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jbn3boys
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Re: From Another Thread - A Personal Note

Post by jbn3boys » Wed Feb 09, 2011 1:48 pm

That sounds like a great idea, Maddy! Go for it! And if you find stuff in old threads that you still don't understand, feel free to either bring that thread back up to the top, or ask more questions. While most of us probably don't understand what you are going through (I'm sure none of us really can), many of us will be willing to help in any way we can.)

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aPAP for 4 months, Switched to BiPap, 2nd sleep study Feb 2011 Possible PLMD
to quote Madalot..."I'm an enigma"

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Madalot
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Re: From Another Thread - A Personal Note

Post by Madalot » Wed Feb 09, 2011 3:11 pm

jbn3boys wrote:That sounds like a great idea, Maddy! Go for it! And if you find stuff in old threads that you still don't understand, feel free to either bring that thread back up to the top, or ask more questions. While most of us probably don't understand what you are going through (I'm sure none of us really can), many of us will be willing to help in any way we can.)
I've just spent the better part of an hour reviewing old threads of mine. I think I've realized that I'm still, a year later, suffering from the same thing Muffy said last year -- what EXACTLY are we treating? SDB or Breathing issues from my disease? At first, we were treating SBD, then we switched to disease issues (diaphragm muscle weakness).

I asked my doctor last year what we were trying to accomplish. She said to keep my oxygen levels up (and we're doing that), and get me sleeping better and feeling better. Not so much on these last two.

I wonder if I have both and that's why no matter what we do, there are still issues.

Short of totally invasive ventilation, is there anything that can be done, treatment wise, that would treat both the problems from the muscle weakness and sleep apnea?

I'm not really expecting an answer, but more asking it out loud to remind myself to ask this question of my doctor and RT.

Unfortunately, I think the answer lies in another sleep study, which we're working on getting done. I'm betting some of the "experts" would love to sit in on that study, huh? Ought to be a hoot to watch! LOL

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Jersey Girl
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Re: From Another Thread - A Personal Note

Post by Jersey Girl » Wed Feb 09, 2011 3:33 pm

Dear Maddy,

I sure don't know enough about your disease to advise you, except for on one common sense issue. Sometimes I think that you may do too much in one day and then you are exhausted. Your disease is not going to let you do what exhausts me in a day without taking a double toll on you. So, maybe if you run out of steam during the day, accept it and take a rest. Sometimes our bodies are just telling us, we have a condition and and it's time to take a rest - not later, but right now!

Also, the trouble with breathing must be addressed by your medical team - you must be kept as comfortable as possible at all times. You will be frustrated, because you will probably continually have to push them for answers and help.

Just know that you are not alone. We care about you and are praying for you - for your health, your comfort, for your happiness.

With much love,

Jersey Girl

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jbn3boys
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Re: From Another Thread - A Personal Note

Post by jbn3boys » Wed Feb 09, 2011 3:41 pm

Jersey Girl wrote:Dear Maddy,

I sure don't know enough about your disease to advise you, except for on one common sense issue. Sometimes I think that you may do too much in one day and then you are exhausted. Your disease is not going to let you do what exhausts me in a day without taking a double toll on you. So, maybe if you run out of steam during the day, accept it and take a rest. Sometimes our bodies are just telling us, we have a condition and and it's time to take a rest - not later, but right now!

Also, the trouble with breathing must be addressed by your medical team - you must be kept as comfortable as possible at all times. You will be frustrated, because you will probably continually have to push them for answers and help.

Just know that you are not alone. We care about you and are praying for you - for your health, your comfort, for your happiness.

With much love,

Jersey Girl
Very well said, Jersey Girl!

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Mask: Swift™ FX For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: titration 11
Sleep study (Aug 2010): AHI 16 (On mask AHI 0.2) <-- Now, if I could just attain that "0.2" again!
aPAP for 4 months, Switched to BiPap, 2nd sleep study Feb 2011 Possible PLMD
to quote Madalot..."I'm an enigma"

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Madalot
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Re: From Another Thread - A Personal Note

Post by Madalot » Wed Feb 09, 2011 3:46 pm

Jersey Girl wrote:Dear Maddy,

I sure don't know enough about your disease to advise you, except for on one common sense issue. Sometimes I think that you may do too much in one day and then you are exhausted. Your disease is not going to let you do what exhausts me in a day without taking a double toll on you. So, maybe if you run out of steam during the day, accept it and take a rest. Sometimes our bodies are just telling us, we have a condition and and it's time to take a rest - not later, but right now!

Also, the trouble with breathing must be addressed by your medical team - you must be kept as comfortable as possible at all times. You will be frustrated, because you will probably continually have to push them for answers and help.

Just know that you are not alone. We care about you and are praying for you - for your health, your comfort, for your happiness.

With much love,

Jersey Girl
I have to laugh at this a little bit. I would agree with you about doing too much except I have cut back on everything but almost essential activities! Seriously. My husband has told me that if he had to do as little each day as I do, he wouldn't be able to stand it!

Seriously, I do what I HAVE to do each day and rarely more. Sure, my hubby takes me shopping once in a while, but more often now, I send him and I stay home. I do get up every morning and take a shower and get dressed. Every other day I do laundry, but my kids bring it to the laundry room and load/start the first load, then they take it from the laundry room. I try to fix dinner most nights, but my kids have to help me prepare it and clean up. By 6:00 pm most nights, I'm in my robe and in my recliner, settled in for the night. My computer is near my recliner so I sometimes go back and forth. I frequently don't go to the bathroom, holding it longer than I should, simply because it's too far to walk, come back to the family room and have to go back again for bed.

Sometimes during the day, I just sit on the computer or sit in my recliner, staring into space. The last time I napped in my recliner, like I usually do, I woke up gasping for air, then choked on my spit. Fun, huh?

Truthfully, short of laying in bed all the time, I've modified my activities as much as I think I can.

I appreciate the support Jersey Girl.

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Jersey Girl
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Re: From Another Thread - A Personal Note

Post by Jersey Girl » Wed Feb 09, 2011 3:56 pm

Dear Maddy,

We both know that your disease is progressive. It will worsen - but your comfort needs to be addressed at all times. I can only imagine how frustrating it must be to have to rest and not do all the things that you would like to do. I wish that I could wave a magic wand and take away the disease and the accompanying exhaustion and muscle weakness. But, it's not that easy, is it? So, keep on keeping on!

Sending you virtual hugs,

Jersey Girl

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Madalot
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Re: From Another Thread - A Personal Note

Post by Madalot » Wed Feb 09, 2011 4:20 pm

Jersey Girl wrote:We both know that your disease is progressive. It will worsen - but your comfort needs to be addressed at all times.


Truthfully, I think is one of the things that I'm dealing with. While I think we have part of my breathing issues treated fairly well, I don't think we have ALL of them treated effectively, thus making any progression of my disease seem worse.

It's so hard for me to believe that as recently as 2003, I was still working a full time job and could do almost anything I wanted as long as I was smart enough to use a cane. Hard to believe it's gotten to this point.

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jnk
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Re: From Another Thread - A Personal Note

Post by jnk » Wed Feb 09, 2011 6:55 pm

Madalot wrote: . . . my hubby takes me shopping once in a while . . .
That is a lot. Maybe not compared to what you once did. But still. Of course, I'm a male, so maybe I find shopping more exhausting than you do. I'd rather split logs by hand than shop, myself, though. Food shopping is the worst. Especially in NYC. No store should have more than five kinds of cheese. Fifty kinds is mental cruelty. A hundred kinds should be punishable by the FDA for the mental exhaustion of having to pick through it all to find the Kraft American! Most non-food things I order off the Net and let the mail people do all the legwork. I hope you get joy from the shopping trips, though. As you can see from the above, my problems with it are more mental than physical.
Madalot wrote: . . . I do get up every morning and take a shower and get dressed. . . .
Well, there's something to be said for that. There is some victory in it, even for those in optimal physical condition. There is a mental and emotional victory directly related to how much physical energy is expended doing that.
Madalot wrote: . . . Every other day I do laundry, but my kids bring it to the laundry room and load/start the first load, then they take it from the laundry room. . . .
Laundry? You gotta be kidding me! Make the kids do ALL of that. PLEASE!!
Madalot wrote:. . . I try to fix dinner most nights, but my kids have to help me prepare it and clean up. . . .
You're wearing me out. That stuff is work.
Madalot wrote: . . . By 6:00 pm most nights, I'm in my robe and in my recliner, settled in for the night. My computer is near my recliner so I sometimes go back and forth. I frequently don't go to the bathroom, holding it longer than I should, simply because it's too far to walk, come back to the family room and have to go back again for bed. . . .
Holding it like that can stress the body a lot, especially when your body knows it has muscle weakness. But you knew that. Eliminating waste is priority number one for any living thing. Allowing your body to do so in a timely, stress-free fashion is a way to fight exhaustion. Waiting may be particularly counter-productive for you.

Jersey Girl makes some delicate points well. If you keep measuring what you do with what you were able to do, you can end up digging an emotional hole deeper than it needs to be. If you compare what you do with what you could easily have decided not to do, but did anyway, for the sheer joy and victory of doing it, you may find yourself closer to where you want to be mentally, emotionally, and spiritually. Yeah, easy for me to say, I know. But in one sense, we all have to fight some of those battles on a daily basis.

Madalot, I think some reasons some with knowledge hesitate to offer suggestions is that no one wants to feel he is working at cross-purposes with your medical professionals, and no one wants to be an excuse for your not developing the needed relationship with your RRT, for example. The relationship between an RRT and a ventilated patient can be a delicate dance that no one wants to cut in on, since those are the arms you need around you, respiratory-wise.

Respiratory and sleep are two very different areas of medicine that touch but don't quite smoothly merge yet, I don't think. The medical people may be rare who have experience with simultaneously navigating through both areas of medicine in an effective way with patients dealing with unique muscle conditions. And much of what those professionals would do would need to be done face-to-face, from what I understand. Even the most experienced expert might feel daunted with trying to be of much help to you over the Net with that stuff. A good, experienced RRT can just sort of sense things from watching the patient breathe on a machine, things that can't be asked or answered from a distance. At least, that's how I understand it.

I don't mean to sound like a broken record. But I hope that explains some of why the silence can seem deafening with what you ask about. I think it is still good you ask it and let it be discussed here. As you say, it helps you figure out what to talk to your team about.

Only my 2cents, and I could be wrong on all of that. Hope it helps more than hinders.

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Re: From Another Thread - A Personal Note

Post by DreamDiver » Wed Feb 09, 2011 7:21 pm

Hang in there Madalot.

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Re: From Another Thread - A Personal Note

Post by Madalot » Wed Feb 09, 2011 9:14 pm

jnk wrote:[Jersey Girl makes some delicate points well. If you keep measuring what you do with what you were able to do, you can end up digging an emotional hole deeper than it needs to be. If you compare what you do with what you could easily have decided not to do, but did anyway, for the sheer joy and victory of doing it, you may find yourself closer to where you want to be mentally, emotionally, and spiritually. Yeah, easy for me to say, I know. But in one sense, we all have to fight some of those battles on a daily basis.

Madalot, I think some reasons some with knowledge hesitate to offer suggestions is that no one wants to feel he is working at cross-purposes with your medical professionals, and no one wants to be an excuse for your not developing the needed relationship with your RRT, for example. The relationship between an RRT and a ventilated patient can be a delicate dance that no one wants to cut in on, since those are the arms you need around you, respiratory-wise.

Respiratory and sleep are two very different areas of medicine that touch but don't quite smoothly merge yet, I don't think. The medical people may be rare who have experience with simultaneously navigating through both areas of medicine in an effective way with patients dealing with unique muscle conditions. And much of what those professionals would do would need to be done face-to-face, from what I understand. Even the most experienced expert might feel daunted with trying to be of much help to you over the Net with that stuff. A good, experienced RRT can just sort of sense things from watching the patient breathe on a machine, things that can't be asked or answered from a distance. At least, that's how I understand it.

I don't mean to sound like a broken record. But I hope that explains some of why the silence can seem deafening with what you ask about. I think it is still good you ask it and let it be discussed here. As you say, it helps you figure out what to talk to your team about.

Only my 2cents, and I could be wrong on all of that. Hope it helps more than hinders.
I try not to dwell on what was and try to appreciate what still is. I CAN still get up by myself, shower by myself and dress myself (most of the time). I CAN still stay home by myself during the day. I CAN still use the computer (yeah).

One of the common problems of my suspected disease is hearing loss and I DON'T have that. I have enough other stuff but I'm thrilled about that one. I hear better than anyone in my house!

As far as what I do every day, I equate it to a bank account. I think of as if every person wakes up every morning with a certain amount of energy deposited overnight. The average person gets $500 worth of energy and during their regular day, spends maybe $400. For me, I wake up with $100 and even the simplest task, like getting out of bed, costs me $1 where the healthy person only has to pay $0.10 or so. I understand that I have limited amount of energy and try to budget it so I have enough at bedtime to make it back to bed. And if I've "overdone" it and am running out of energy, I go back early and call it a day.

Walking expends a tremendous amount of energy, but my neuros are adamant that if I don't keep walking when I can, I will quickly lose the ability period. I walk in my house, with a rollator, but use my powerchair for any expedition outside the house, including any shopping. That saves me a lot of energy.

I appreciate what you're saying and understand it. For what it's worth, I agree about sleep issues being different from respiratory issues. And I think the RT I'm working with now is going to be the key to "saving" me. The problem is he's just helping out, but he's really doing his best.

jnk, You have a unique way of giving me information and grounding me. You've done it since the first day I posted here. Thank you.

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Madalot
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Re: From Another Thread - A Personal Note

Post by Madalot » Wed Feb 09, 2011 9:49 pm

I want to add a quick note to this thread....

When I was reading back to last year, I have to say that the RT I was working with at the time was not very knowledgeable about things. When I first started on the ventilator and I was having problems (aren't I always?), she would suggest things that didn't make a lot of sense to me, so I came here and asked the question. Like when the apnea alarm went off constantly and we kind of figured out that the breath rate/apnea BPM rate were the problem - my breathing was too slow. She told me to INCREASE the breath rate. It didn't make sense to me and coming here asking that question got me answers that confirmed what I was thinking -- my RT went the WRONG way to fix the problem.

Nobody said it outright, but helped me by confirming the thinking. I'm sure some of the people were screaming at their screens - NO NO NO -- that's worse!!! And it was.

When I was having problem where it didn't seem like I was getting my full inhale pressure, my RT suggested using the Ramp. This didn't make sense to me either and people here confirmed that.

So, I have gotten a lot of good information, even if people don't want to tell me what to do and some are worried about giving me any help, it DOES help me when they chime in on their knowledge about anything I'm talking about. It DOES help....

And sometimes, my DME/RT/DOC says something about my situation or treatment that I just don't fully get. And I know that there are people here that understand this stuff.

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Re: From Another Thread - A Personal Note

Post by cflame1 » Wed Feb 09, 2011 10:37 pm

kind of like the "spoon theory"

https://www.youtube.com/watch?v=jn5IBsm49Rk