i might not be here much longer

not sure if i'm posting this in the right place, maybe this should be considered a rant, whatever..

well recently in florida with changes in healthcare(not obamacare related) i have to switch from a med-waiver which i've been on for awhile to a managed care plan to pay for nurses, supplies, equipment and such because my disability(duchenne muscular dystrophy if you were curious).
anyways my in-home nursing provider's boss is trying to start some bs because the plan i'm switching to wont pay enough even though he's too lazy to find out any information including the actual price, forcing my mom to find it out even though they(the managed care counselor) can only give that info to providers(him).

sorry, i'm babbling here but i am angry and nervous because this morons' greed is possibly endangering my personal freedom and longevity, if he succeeds then i might have to be forced into a nursing home but maybe now that i demanded to dump his agency from the plan i might get out of it but who knows what he might try.

so if i somehow get screwed out of all this i wont be posting any more, considering how in my experience nurses and such ignore you and step all over you when you're alone and with no one to vocalize your words, needs or requests then i highly doubt i'd be shown much consideration with internet or access to my computer when stuck in such a place(yeah i don't trust nurses, doctors or etc very much). when you aren't a kid or elderly (i'm 31 just to be clear)you tend to be treated like you're brainless or lacking critical thought, as if they can get away with anything just because you can't be heard by anyone and it eats away your trust after enough times.

anyways pray or hope or whatever i can remain free from a nursing home or some other facility so i can keep interacting with you all but if not i might be reluctantly forced to do things i'd rather avoid to keep my freedom intact.
yeah if it goes bad i'd rather die free in my own home than become a virtual prisoner so one way or another if all goes well i wont have an issue but if not then good bye for one reason or another everyone.

thats all, thanks for reading all this(if you did) i kinda went on a rant there.

reply to post by namehere


Hang in there and let us know what happens.

I can only wish you the best of luck.
And maybe you can get some carers that actually "care".

(((Good Thoughts))) out to you.

I'm so sorry for all of the uncertainty and trouble you are having to face, on top of your condition. Try to stay positive. We'll still be here, hoping the best for you and waiting to hear back.

That's just terrible, I am sad to hear you are in such a way. Myself and mine will certainly hold you up in our thoughts and meditations.

Is there some avenue of case management you could persuit ? I'm not sure the systems are that much different between us, but the means of covering costs are.

I know here in all hospitals there is a system that is in place to deal with exactly what you are talking about, people who's job it is to see to long term cases like yours prone to slipping all the cracks. Might there be someone you can inquire about like your GP about such a program? In your circumstance it should be covered in the most basic plans.

If you can gain the services of case management they deal with all the avenues that are available and make known all the different programs etc. accessing the right resources can sometimes find doors you didn't know existed, internet access to disabled being among them.

I simply can not imagine what you are going through, I'm in my forties and do not have experiences that touch yours. I really hope all the best to you, don't be to proud to access every option that is available to bring comfort, and with a clear strong voice.

For what it's worth, I will hold this in my mind and prayers.

Best regards,

Tree speaking Mark

I most certainly hope for the best for you, namehere. Trust for those in the healthcare profession can be a rarity these days. I'm so sorry to hear of your illness, and being disabled myself, I can relate to your plight. Life can be one fun trip after another, eh?

Good thoughts and vibes sent your way, namehere. Will only envision you in the best of health and no more need to be in the hands of those who appear to have no souls.



A good friend told me the nursing home care for his Father has never been better ever since he installed a few cameras in his Dad's room, complete with night shot, and accessible via computer.
Two cameras are visible, 2 are not.
He also said they're very inexpensive.

Wishes and intentions for everything good your way, namehere.

reply to post by Treespeaker


indeed i have a case manager but since managed care providers are private businesses he has no say in their decisions but they aren't the problem here beyond not being much help and lack of communication

anyways thanks for the support everyone and strangely every time in the past i've had healthcare service related issues i've always got lucky and escaped any issue by the skin of my teeth so hopefully my luck continues and i can keep my way of life as it's always been.

i get medicaid but the other program pays for what they wont like nursing.. i'm not sure how it all works exactly but i think this might explain what it's all about whoever wants to know, and as it turns out obamacare is partly, no maybe a lot to do with this chaos i find myself in, i was freaking out before so i probably exaggerated some things and left others out.

but yea i'm glad to know people on here can be a friend when you need it even if we don't always agree and get pretty heated, angry and such sometimes, makes me feel some hope in humanity after all when it seems lost to me.

reply to post by Divine Strake


eh well it's not an illness per se, i mean except a few parts that don't work but yeah it's been a crazy journey indeed so thank you for the well wishes.

beezzer
reply to post by namehere

 

Hang in there and let us know what happens.

same from me. Damn, this is the sort of thing that makes me so annoyed when fellow brits dis our NHS. Best wishes to you xx

I hope that this will work out for you.It is truely sad that in this day and age,that some one like you who has a longterm disability has to go through what you are dealing with.Shameful really.

I offer a prayer and blessing for you.

I see that you are a fan of Thomas Jefferson,as am I.Best of luck to you and do keep us posted please.

reply to post by namehere


If I were you, I'd take my disability payments and move out of the U.S.

Your story is infuriating!
I would contact the local news (I realize that this is a bit cliche', but if they are a private business, it will affect them) and tell the story.

You'd be shocked how fast someone's attitude will change when public opinion is turned against them (especially when it involves an business that is supposedly involved in the care of people).

Good luck, and I hope you consider going public with it, if it doesn't solve your problem, you'd at least give that place a decent-sized black eye.

reply to post by ProfessorChaos


^ not a bad idea!! sorry you are having a rough time of things medical....we're here for you and hope thing work out okay...keep us posted

Praying for you now.

Hang in there.

I a so sorry you are going through this crap! I will keep you in my thoughts and prayers. Hugs!

Don't say goodbye.
I HATE goodbyes. Just cling on to that last shred of hope if possible.
You just need to try. Look at all those who care that has to say something about you.

Instead never say goodbye, if you never say it then you're not really gone you're just not here right now.

reply to post by namehere

Ummm...I want to apologize....all I can offer you are words...words imbued with intent, with compassion, with an honest appraisal of their limitation in the depth of this emotion. It's difficult to sit here at my keyboard while tears form and fall...while my nose runs and I keep sniffing back that flow. The difficult part is realizing that all of my good intention rings hollow...you see, I have nothing substantial to offer you there to help ease your burden...no sure answer...no profound peace.

All of my caring...all of compassion...will amount to a few shy handfuls of naught...for never in any measurable way was emoting ever enough. I truly am sorry....If I could reach out to you and lift you high above your travails......then by God I would. In the end though...all I have to offer you are words...and words are never enough my friend........never enough by far.

All I know...is that I am made better...because you are...

YouSir

ProfessorChaos
Your story is infuriating!
I would contact the local news (I realize that this is a bit cliche', but if they are a private business, it will affect them) and tell the story.

You'd be shocked how fast someone's attitude will change when public opinion is turned against them (especially when it involves an business that is supposedly involved in the care of people).

Good luck, and I hope you consider going public with it, if it doesn't solve your problem, you'd at least give that place a decent-sized black eye.

Sorry to hear about your situation.

I do think this would be the right approach, call the local action news team and have them dig into all of this. Sometime the world can be an overwhelming place when you do not have others lending a hand.

Public Opinion is very powerful.

Good luck to you,

RT

reply to post by namehere


Stay strong and never give in to that boss` bs. I agree, you might want to tell him, if he doesn`t find a way to satisfy both parties, you will call the news and make him antagonist there, so that people will know him, his company and his ways of treating people. Usually standing up for yourself makes a statement and convince those bloodsuckers to drop their ego...but unfortunately not all the time and might even make things worse

Anyhow, I hope it ends well and you are able to stay with us...best wishes.