OT my story

[fordjx4000]

hi everyone i thought i would share my story
with everyone here
my name is chantilly
i was born at 26 weeks i was a preemie
i was born with copd asthma broncopulmonary dysplashia and i have learning disabilities
i first started therapy on cpap dec 30 2011
i thought i had sleep apnea at first but i found out years later i have a conditon known as ondines curse or congenital hyperventilation syndrome
i am now on a bipap auto sv advanced
i call this site a secend home becouse i have learned everything i know from this site
and everyone of its users everyone here is wonderful and i have made friends here
that is my story

[Stormynights]

It is nice to meet you Chantilly. This is a good place to make friends.

[ems]

Hi Chantilly... I'm so glad you felt comfortable enough to share your story. We all have a story to tell. You do have challenges and I get the impression that you are handling them quite well.

I hope it's not too personal to ask... but I was wondering if you have a supportive family and friends?

Most people here are caring and kind. Once in awhile there is someone who is not. Just ignore that person.

I'm happy that you decided to stick around!

[deerslayer]

God Bless chantilly !
Welcome aboard

[Tino2You]

Hi Chantilly. Glad you decided to stick around. I too have this site pinned on my browser. I learned everything I know about CPAP from the good people here. I may not write every day but there is not a day that goes by that I don't see how my "forum friends" are doing.

Hang in there,
-tino

[Julie]

Oh! Such a pretty name! And what a story too. You absolutely have a home here and we'll do whatever we can to help, or just hang with you whenever you feel like it. We're all in this strange funny boat so it's nice to meet newbies (who also have exotic sounding diagnoses! ). I wonder if there are any kind of support groups (the in-person kind) for people with similar problems where you live - have you looked into that at all? I'm not that much of a joiner myself, at least not for some things, but there are times I wish there was someplace to visit once in a while! Talk to you soon.

[Pugsy]

Welcome Chantilly.
Hope you start feeling better soon.

[StuUnderPressure]

Welcome Chantilly.
I saw your mention about Facebook...I don't do Facebook simply because I don't have the time but if you ever need to chat just send me a private message.
I don't know how much help I might be but I am a good listener.

Sorry Chantilly, but I must correct Pugsy.

1st for the correct part of her reply.
She IS a good listener.

But, I disagree with her when she says "I don't know how much help I might be".

Take her up on her offer and I think you will find that she is not only a good listener, but that she will probably have answers to any Questions you have.
And if she does not have answers to your Questions, chances are she can guide you to a reliable source that does have the answers.

She doesn't have 20,388 posts in this forum because she participates in those foolish political or other useless threads that span 50 pages or more. Her posts are always accurate & to the point.

And those 20,388 posts do NOT include the numerous PMs she sends to a lot of people helping them with problems specific to them.

There are of course several others in this forum that probably also could help you. But, why not start with the "Leader of the Pack".

I am also glad you decided to stay.
I am sure you will not regret your decision.

[kaiasgram]

Hey chantilly, you are a survivor and I too am glad you're sticking around here.

[Vader]

Lord bless you, Chantilly!
You're in my prayers and I'm glad to see you've decided to stick around.

[2 B Sleeping Soundly]

Chantilly,

I am just like the rest and am glad that you have decided to stick around our little hose head world. Though not everyone here will agree, and that is perfectly fine with me, I believe in divine guidance/intervention and believe that you are here for a reason. No matter what you are dealing with we are here for you and will make sure you don't have to go through things alone. I will be praying for you and sending positive thoughts your way.

John

[jweeks]

i first started therapy on cpap dec 30 2011

Chantilly,

At nearly two years using CPAP, that makes you a veteran here. How has it been going for you so far? I noticed that my asthma became easier to manage after I started on CPAP. I also noticed that getting better sleep made me more cheerful during the day. Have you noticed any changes like this so far?

-john-

[fordjx4000]

my health issues have gotten worse over the years

[fordjx4000]

im dying from my health issues

[JohnBFisher]

... i was born at 26 weeks i was a preemie ...
i thought i had sleep apnea at first but i found out years later i have a conditon known as ondines curse or congenital hyperventilation syndrome
i am now on a bipap auto sv advanced ...
im dying from my health issues ...

Greetings! You have my empathy. Due to a degenerative neurological problem I've developed similar issues. An ASV unit (the type of unit you now have) is a life saver for many of us. Unfortunately, central apneas (from whatever cause) is poorly understood and often dismissed by the average doctor and nurse. They often try to blame everything else and even ignore diagnostic evidence that they order. But with an ASV you should be able to get have a good night of sleep. And that can make all the difference in the world.

As to the "I'm dying..." .. so are we all. Does that sound cruel? Nope. Due to my neurological issues, I've had more experience at CONSTANTLY dealing with disability and having the face the ultimate outcome from my disorder. But you can either decide to live NOW or collapse in a pity party. I choose to LIVE! And it sounds as if you need to talk with a professional counselor to get some help at developing a healthier outlook.

Shout if there's any way I can help. I've been using CPAP, then BiPAP and now ASV for more about 25 years at this point. I've learned a thing or two about living with one of these contraptions.