From Another Thread - A Personal Note

[Madalot]

Muffy, YOUR greatest strength is your willingness to spend extensive time helping people. You can't control how people are going to respond, so please don't let their responses affect your willingness to help someone else.

As one of the people that Muffy took an interest in and I didn't show my gratitude the right way, I want to reiterate what SU is saying. I would hate to see Muffy (and others) stop helping people. Even though Secret Agent Girl elected to delete every one of her posts from the forum, there is still a lot of excellent information in her thread that can benefit other people. Muffy's (and others) efforts have not been in vain.

I frequently long to turn the clock back a year ago, knowing what I know now, and handle things differently. Unfortunately, I was too new and too naive to understand everything that was being thrown at me so fast and furious. I got overwhelmed and reacted.

I'm paying for it now with little input into the technical aspect of my situation. I sometimes post questions, hoping to get some input from someone "in the know" and once in a while get it. Most of the time, though, I'm on my own.

I tell myself that my situation is just too complex and people are afraid to give me much technical help, but I know that's not the only thing going on. I feel like I pissed off the experts, like Secret Agent Girl appears to have done. I wish she hadn't deleted all her posts, but having been there myself, I understand how it can happen.

I will always be grateful for the help and information I did receive early on. I feel abandoned, left to figure all this out on my own, relying solely on my medical team that frequently takes forever to address even the simplest thing.

I accept that it's my own fault (kind of like Secret Agent Girl) and if I'm on my own in all this, I'm getting what I deserve.

I'm made some friends here and they provide a lot of emotional support and encouragement. That gives me a reason to keep coming here, hopefully being able to give a small piece back to those that need help and/or encouragement.

[Bob3000]

EDIT: When I made this attempt at a humorous post, I had only read the first few sentences of the Madalot's thread and thought this was just another silly internet drama thread about who is mad at who, and who is leaving the forums and why and can we investigate, etc. My apologies, this was a serious thread and not about trivial gossip.

SORRY MADALOT! You can be mad at me if you want. I understand.

[xenablue]

I'm sorry you haven't received the help you asked for. I'm pretty much still a newbie here, and when I first saw your name, thought "this person has the guts to let everyone know they get madalot". I figured if you were letting everyone know this, then it was fair warning.
I'm a member of this forum and a couple of diabetes ones - everyone's battling their illnesses and either winning or losing, but at times we're all frustrated and/or mad and/or feeling like cr@p, so it's up to those who aren't feeling like cr@p at the time to forgive and help those who are.
The only time I get mad online is with idiots/trolls/morons - not with people who are mad because they're ill.

Just my $0.02 worth.

Hugs,
xenablue

[Madalot]

I got up this morning in a mindframe that I was ready to stop using my ventilator and stop taking all my medications so that this damned disease could just get this all over with.

I was feeling a bit better having expressed some feelings in a post.

Thank you, bob3000, for your sensitivity. You couldn't recognize a serious, heartfelt post? You couldn't see the pain the poster was in when it was written? You just had to mock it, huh?

Thank you so much.

Edited to remove vulgarity. That's not my style normally.

[Bob3000]

Thank you, bob3000, for your sensitivity. You couldn't recognize a serious, heartfelt post? You couldn't see the pain the poster was in when it was written? You just had to mock it, huh?

Thank you so fucking much.

Just trying to lighten the mood. Give me a break, I haven't slept in over 24 hours and I am feeling slap happy!!!

EDIT: Still haven't slept, but I did bother to look at review the OP after I saw people were upset by my post. I changed it. My bad!!!

[Pugsy]

I was feeling a bit better having expressed some feelings in a post

Venting is just something we sometimes have to do. I understand. Please don't let an insensitive remark blacken your day. Hard I know..

From your cheering section, we do care about you. I am so sorry that I just don't have any ideas to toss out to you. What few skills I have don't go where you are at.

Brenda

[carbonman]

I accept that it's my own fault (kind of like Secret Agent Girl)
and if I'm on my own in all this, I'm getting what I deserve.

Posted 2/12/10

Anybody know anything about this stuff?

I don't. .....but, I would like to ride along w/you and learn.
As you learn, you can teach us.
....and if times get tough, we'll be there for you.


.....might be a good idea if we all just stick together.

I said it before, I'll say it again.

Madalot,

Tak'n it as you go....
do'n what you can....
tak'n the higher road.

Not know'n where your thoughts and strength are gon'a go,
no idea who may be rid'n along......
it's a journey....no sense go'n it alone.

With open eyes and open heart, so many people really care.
There's so much more go'n on here besides blow'n air up your nose.

[JohnBFisher]

Madalot, I *SO* understand how you feel.

If I knew then what I know now ...

• I would have FOUGHT to have my central apneas treated. Failure to do so led indirectly, but inexorably to Stage 3 Kidney Disease. [ Uncontrolled central apnea caused uncontrolled high blood pressure and SEVERE headaches. I took Ibuprofen for it. Not above the prescribed dosage. But Ibuprofen with the uncontrolled high blood pressure caused the kidney damage. Well, shoot! ]
• I would have FOUGHT to have my central apneas treated. Failure to do so led indirectly to my need to use insulin. [ Okay, Type 2 Diabetes does run in my family. I certainly could have lost more weight and reduced my insulin resistance. In fact, I was loosing weight. I had lost about 50 pounds and was feeling better. But my symptoms advanced and the central apneas got worse. A lot worse. My BiPAP had an auto-off feature and it would cut off because I stopped breathing for a minute at a time. This happened a LOT during the night. And of course, I would wake up feeling like ... well, nothing printable ... and not be able to get the exercise I needed. So both my weight and diabetes got worse. So now I need to use insulin. Well, dang! ]
• I would have FOUGHT to have my central apneas treated. Failure to do so probably led indirectly to my need to to be on Long Term Disability. [ As with any degenerative neurological disorder, long term, ongoing stress tends to cause the situation to worsen. It was bad enough that I worked in a toxic environment. But add to that the controlled central sleep apnea that led to worsening of the diabetes and uncontrolled high blood pressure. Talk about a double whammy. That was more like a quadruple whammy: work, apnea, diabetes, and bp. Well, gee whiz! ]

But I can not controll what happened. It will eat me up, if I worry about what might have been. I am much better on focusing on what I can do now. Though I can not do much about my won situation, I want to try to help others to avoid similar problems. Others helped me, so I am "paying it forward" and helping others.

Now, I'm not saying that you do not do that. In fact, I see you trying to help uplift others every day. So, do keep up the good work.

And know what I've found. Though I sometimes get frustrated that my doctors don't seem to notice or care about serious issues (my internist recently wondered "What kidney disease?" after she had referred me to a nephrologist to confirm the disease!!), I need to remember they are also overwhelmed by the day to day issues we all face. Double Ditto with the folks who help others here.

I try to do what I can. I know that Muffy (and NotMuffy) and -SWS and others try to help when they can. But being strictly volunteer and the fact they are also dealing with their day to day issues, combined with how unusual your case is ... well, it's little wonder you sometimes hear crickets when you ask a question. It is NOT that we don't care.

Most recently, my going on insulin kept me from posting. Thank God I saw the increased numbers and pushed my doctor to put me on insulin. I am feeling MUCH better as a result.

But don't think we don't care. We do. A lot. It just sometimes takes persistance to be heard. I know that from personal experience.

As to your feeling of dispair ... I wish I could do more than offer the trite "Hang in there!" sayings. But there is in fact little I can do. I *KNOW* how you feel. I also fight with black days. And I'll be darned if I know of any magic incantations I can offer that will help ... other than perhaps my signature line. So, while I can do little, I will do what I can. I've responded to let you know you are understood ... and we care about you. And I will pray that you will find some answers and peace. But I offer this (my email and prayers) for what they are worth.

Grace & Peace!

[chunkyfrog]

No, Madalot, you DON'T deserve this disease--none of us do.
It's like a card game;
we play the cards we're dealt,
and try to stay in the game as long as we can.
If it gets too rough, sometimes a little humor helps us through--
sometimes that can be awkward--I've been guilty, too. Sorry.

[Robespierre]

Maddy, you know I'm thinking about you and rooting for you every day.

[jnk]

I don't have the technical training to be of much help to you, and I am personally unaware of your having ticked anyone off.

But for what it is worth, I was glad the first day you arrived here and have been glad you have remained.

Your being here asking what you ask and contributing what you contribute makes this place that much more a place I like to be.

Not everyone will "get" your take on things and your personal approach. That's fine. Most lightly-moderated boards have some lack of sensitivity built into them, and we all find ways to swallow it. It is what it is.

I have learned from carbonman's approach to it all, myself.

[DocWeezy]

And just another voice that quietly cheers you on....

I have no knowledge with which to help you, and I've not posted in response to anything because I don't want to sound trite or calloused--the opposite is true. I think of you often and admire your strength, determination, and persistence. How you cope and continue on every day is inspiring.

I'm betting that there are probably a whole lot of us out here who are in your cheering section and who keep you in our thoughts and prayers. I'm one of them and will continue to be so, even though I have no words that can express my admiration of your strength, and my sympathy and sorrow for your situation.

Weezy

[robysue]

To madalot and JohnBFisher,

I've gained a lot from both of your posts. A sense of humility among other things---and a sense of gratefulness. Both of you display a graciousness in the face of multiple serious medical conditions that causes me to remind myself to be grateful for the fact that I am healthy in spite of the OSA and the insomnia. And it provides me with the gentle and useful reminder that in spite of all my trials and tribulations with my adjustment to xPAP that I'm really one of the lucky ones in that my OSA was caught early---before it had done any serious damage: my blood pressure is low-normal, my blood sugar is normal, my heart is a-ok, my weight is low-normal, I have an active lifestyle, I had an excellent memory pre-CPAP (and I hope it returns one of these days when the insomnia is under control), and so-on and so forth.

I truly wish I were as gracious as the two of you are. You are both remarkable people. And I keep you both in my prayers and thoughts daily.

[Madalot]

EDIT: When I made this attempt at a humorous post, I had only read the first few sentences of the Madalot's thread and thought this was just another silly internet drama thread about who is mad at who, and who is leaving the forums and why and can we investigate, etc. My apologies, this was a serious thread and not about trivial gossip.

SORRY MADALOT! You can be mad at me if you want. I understand.

I respect a person who admits a mistake and apologizes for it. Thank you. Apology accepted and appreciated.

In turn, I regret and apologize for getting so mad over it. I'm sorry as well.

Thanks to everyone else that posted here. It's appreciated.

My DME summed it up perfectly when he got a copy of an email I had sent to my doctor. I am at the end of my rope with this treatment. To the doctor, everything looks pretty good because my overnights are great.

My oxygen levels could stay at 99% all night and it wouldn't change the fact that I feel lousy, am tired and falling asleep (more like passing out) every afternoon, frequently have difficulty breathing when trying to fall sleep, and wake up 4-10 times a night.

Something just isn't right and I am totally, 100% at the end of my rope.

[Madalot]

I try to do what I can. I know that Muffy (and NotMuffy) and -SWS and others try to help when they can. But being strictly volunteer and the fact they are also dealing with their day to day issues, combined with how unusual your case is ... well, it's little wonder you sometimes hear crickets when you ask a question. It is NOT that we don't care.

Absolutely agreed. I appreciate your pointing that out and making me see it. Once again, I need to say "I'm sorry" for saying something that made it seem to the contrary.

As far as my case, some of the best medical professionals around are scratching their heads. Yes, it's unusual and I understand how people here may be very wary of offering much regarding it. I understand it.