Ventilator - Status (Update)

[Madalot]

Glad to hear you got your own vent back, and that things are turning out well with the DME too. The sleep neuro also sounds promising.
I hope the lower dose of Benadryl will help you find more refereshing sleep at night, and less jittery days!

Thank you. And my thanks to everyone that has posted, read or sent me a message. I frequently wonder if my posting about my situation is worth doing and sometimes feel that I should stop and just deal with this privately and on my own. But every time I make up my mind that I should STOP posting about my situation, someone posts a kind and caring comment or encouragement. Plus, my threads keep being read so there's obviously some interest.

A part of why I keep posting is the thought that there could be some lurkers out there, in similar situations, that are watching and learning about what is happening with me.

So, even though I frequently feel like I come off as "attention seeking" that's not why I'm posting. I keep posting and updating to keep those that care updated and in case there are lurkers that are following along for their own benefit.

Last night was my second night at 1/2 dose of benedryl and I DO think it helps. I feel I'm sleeping more soundly than before and yesterday was a fairly good day (it's too early today to base anything). However, pain was an excruciating part of my night last night, waking me up numerous times.

I AM keeping a written journal and will be sure to have it typed up to take with me to the new doctor. This poor guy is going to have a lot to look at.

[Pad A Cheek]

Madalot,

You are helping someone out there that is afraid of all the things they are dealing with. You are giving them an example to follow complete with the reality that sometimes this just gets to be overwhelming for you and you push it away. That is all very valuable insight for those who need to know that they are NOT alone.

Thinking that you are the ONLY person out there dealing with your same issues can be very lonely and depressing on its own. You are helping by posting your journey. Please keep on posting, that is the very mission of this forum. We each try to help add some light to the challenges that we are facing with PAP therapy and more complex issues like yours.

You are a brave and benevolent member of CPAPtalk and I look forward to your future posts.

Hugs,

Karen

[Madalot]

Madalot,

You are helping someone out there that is afraid of all the things they are dealing with. You are giving them an example to follow complete with the reality that sometimes this just gets to be overwhelming for you and you push it away. That is all very valuable insight for those who need to know that they are NOT alone.

Thinking that you are the ONLY person out there dealing with your same issues can be very lonely and depressing on its own. You are helping by posting your journey. Please keep on posting, that is the very mission of this forum. We each try to help add some light to the challenges that we are facing with PAP therapy and more complex issues like yours.

You are a brave and benevolent member of CPAPtalk and I look forward to your future posts.

Hugs,

Karen

Awww Karen -- what a wonderful post. Thank you.

You know, at times I DO feel so alone. So much of what is happening to me is NOT supposed to happen. Typically, pain is NOT a part of the neuromuscular disease they suspect, but I sure do have it. Breathing problems aren't supposed to be quite this bad either, not at this stage. Most people in my situation do just fine on basic bipap machines -- but look at me. It seems that nothing goes the way it should or goes easily.

It does make me feel alone when some of the best minds in the medical community are scratching their heads at my issues.

But coming here, sharing, complaining, whining, laughing -- makes ME not feel so alone too. So, I guess I AM being a bit needy and selfish.

[NanceK]

I don't post often, but know you're often in my thoughts and prayers. Here's to brighter days...

[BlackSpinner]

But coming here, sharing, complaining, whining, laughing -- makes ME not feel so alone too. So, I guess I AM being a bit needy and selfish.

Your are not! You are being human and part of that is being part of the tribe/herd. Plus the rest of the herd needs to practice helping you. Being human means helping others, listening and bonding with all different kinds of people. Being human means not leaving the weak ones behind for the wolves. Thank you for being here and allowing us to practice our humanity (ok most of us).

[DoriC]

Maddy, your posts always speak directly to my heart and even though our situations are different, it helps so much to know there are others out there struggling with serious medical issues and feeling the same frustrations and looking for any answers that might help. Almost every day my dear husband comes up with one new problem or another that debilitates him a little more that I try to solve. Right now his cpap data is not good, he's very sleepy most of the morning, his breathing pattern seems to have changed,not sure why, so I'll be requesting another sleep study, he's having an echocardiogram next week to r/o CHF. And on and on it goes but life is precious and we have to keep up the good fight, it's the only thing we can do for ourselves and our loving families.

[Madalot]

Again, my thanks for the kindness.

I guess, when you consider, that I told my husband a few years ago that I would NOT use any breathing equipment (I was adamant at the time), it's impressive to see where I am now. I may not be completely successful yet, but I AM using it 99% of the time. And even though the stress is a lot on us, we both realize the consequences of my NOT using it. Plus, struggling to breathe is an incentive of sorts to keep at it.

Plus, despite my occasional bouts of complaints and whining, I AM very strong willed and determined.

AND...I'm choosing to be excited about this new doctor and hoping he'll have some insight into some of these issues. A new perspective is a good idea at this point.

[JohnBFisher]

... You are a brave and benevolent member of CPAPtalk and I look forward to your future posts. ...

Seeing the previous post from Madalot, I was wondering what I should compose to say "you matter to us and others around you". Fortunately, I continued to read and found your wonderful post, Karen. Thank you for saying so elegantly what many of us believe.

Madalot, there may be very few here in similar circumstances. But we can all relate to dealing with overwhelming circumstances. Sometimes we need a reminder that our own problems are not as great as we think they are. Other times they are as overwhelming as they seem. Still seeing another honestly discuss how they shoulder their boulder and continue to push it uphill can be comforting.

Nor is this a new need we all face. Remember your classics.

The Myth of Sisyphus is an old myth that shows how we can and should continue to shoulder our boulders and continue to push them uphill in spite of seemingly endless struggle.

And it was Socrates, who said:

If all misfortunes were laid in one common heap whence everyone must take an equal portion, most people would be contented to take their own and depart.

Yes. You help. In many ways you might not fully realize. Thank you for your honesty and sharing.

[C**]

((((((HUGS))))))