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Author Topic: My life is forever changed because of my illness  (Read 23235 times)

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #15 on: January 28, 2011, 11:21:25 pm »
Christine- Awww happy b-day from me :]


Dragon- Where in the valley. I'm in Modesto currently. Not the greatest place but yeah haha.

Se0269- You're absolutely right. I have not seen that doctor since then. I didn't even write him on my form because i knew he'd just be a dick. My primary has been nice to me and he's one i'd like to stay with. My husband agrees as well. I always make sure he's there with me because i have trouble getting around on my own.


Update.

Disability today sent my husband, and i, two packets to complete i guess they said they didn;t have enough information to make a decision so i had to do the whole works about what i can and cannot do and my day to day life. It felt great to really put down in words what my limits really are. Checking off answers online on a form doesnt always give you a chance to really say what you need. Especially in a complex illness like mine. They're already in the mailbox and ready to be sent tomorrow. :]

Dragon Fly

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Re: My life is forever changed because of my illness
« Reply #16 on: January 29, 2011, 12:37:30 am »
Boo! (I just love being able to say Hey BOO!)

I am in Southern CA...but from Norther CA. Right now I live in Sherman Oaks so we are not close afterall. Grew up in Berkeley. Born in SF.

That is GREAT that they already sent you the Adult Function and Third Party forms. I say that because there is a big backlog in California right now, and when I applied in early October, i learned that my case was going to be "shelved" for up to 120 days. They actually opened it about 2 months in...but I am happy to hear that your case is already rolling. Excellent.

I have my boyfriend come to all my doctor's appointments as well. It is amazing how quickly the demeanor of the doctors (male especially) change when he is there. Also, he hears things that I miss because I am usually in so much pain and riddled with anxiety over being there in the first place.

Keep us posted...and keep copies of your function forms and all other docs you send to SSA! It's a good idea to write your social security number and name at the top of each page, just in case things get ruffled on someone's desk or in transit!

xo,
>;<
Dragon Fly
"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #17 on: February 01, 2011, 11:48:03 am »
Boo! (I just love being able to say Hey BOO!)

I am in Southern CA...but from Norther CA. Right now I live in Sherman Oaks so we are not close afterall. Grew up in Berkeley. Born in SF.

That is GREAT that they already sent you the Adult Function and Third Party forms. I say that because there is a big backlog in California right now, and when I applied in early October, i learned that my case was going to be "shelved" for up to 120 days. They actually opened it about 2 months in...but I am happy to hear that your case is already rolling. Excellent.

I have my boyfriend come to all my doctor's appointments as well. It is amazing how quickly the demeanor of the doctors (male especially) change when he is there. Also, he hears things that I miss because I am usually in so much pain and riddled with anxiety over being there in the first place.

Keep us posted...and keep copies of your function forms and all other docs you send to SSA! It's a good idea to write your social security number and name at the top of each page, just in case things get ruffled on someone's desk or in transit!

xo,
>;<
Dragon Fly

Oh that's nice area. I moved here from New Jersey a little over a year ago. Grew up there so Cali was wayy different.

But yeah those forms got sent out saturday the 5th. Did my best to fill them out the best i could.

I can concur with that about boyfriends changing the tune for male doctors. That's exactly one of the reason i have him there. He always asks a 101 questions to make sure he's covered everything. It's also great because he's learning i think it's cute haha.

Now this question i cant help but be curious. With disability. How often do you get paid once a month or bi weekly, how much is it usually? .Ii cant help but be a plethora of emotions one being excited. Im not sure if thats selfish or greedy but, im tired of sleeping on the floor of a 1 bedroom retirement home and id love to have money to get a bed and my own place :3

Trajector Media

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Re: My life is forever changed because of my illness
« Reply #18 on: February 01, 2011, 01:40:19 pm »
Hi BooBerry,
     When you are approved for disability, you get paid once a month according to your birth day.  Here is a schedule of payments.  http://www.ssa.gov/pubs/calendar.htm

Marci
I speak from experience not expertise.

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #19 on: February 01, 2011, 01:48:26 pm »
Does the amount they pay you vary? I'm just curious if it will be enough to live off of. You know Rent, Utilities and stuff. My husband lost his job and were struggling with unemployment.

Trajector Media

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Re: My life is forever changed because of my illness
« Reply #20 on: February 01, 2011, 02:13:53 pm »
Booberry,
     The amount is depended upon whether you get SSI or SSDI Disability.  If you do not have enough work credits to receive SSDI, you will get SSI upon approval.  The amount you get for that is 674 a month.  If you are on SSDI disability, it varies based on how much you earned prior to becoming disabled.  You get a statement each year from Social Security that will give you this info.  There is a tool you can use if you have info about prior employment here:  http://www.ssa.gov/planners/benefitcalculators.htm .  You can also request a copy of your social security statement here:  http://www.ssa.gov/mystatement/
     The average amount of a SSDI payment is a little over a 1,000.  Though it can be as high as 2,000.  If you receive an SSDI payment of less then 674, SSI will make up the difference.
I hope that helps,
Marci
I speak from experience not expertise.

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #21 on: February 01, 2011, 03:29:35 pm »
Well that's not looking good for me. The only job i ever had was at mcdonalds when i was 15 for about 3 months and havent worked since.. i dont think i could even survive off 674. Rent where i live is like 500 and up no utilities and everything. This is so upsetting:(
« Last Edit: February 01, 2011, 03:36:42 pm by BooBerrY »

Trajector Media

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Re: My life is forever changed because of my illness
« Reply #22 on: February 01, 2011, 08:52:03 pm »
Shanna,
     I responded to your PM but wanted to also respond here.  I know there are a lot of programs for people on disability.  They vary depending upon which state you live in.  I know there is another post about this somewhere but I can't find it right now.  Perhaps Pati can jump in as she is the resident expert on this kind of thing. 
Marci
I speak from experience not expertise.

Kittyholic

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Re: My life is forever changed because of my illness
« Reply #23 on: February 02, 2011, 02:36:48 am »
Shanna:

There are a couple of other topics you might want to check.

This topic explains the additional supplements states provide. There is a link to a publication that has social services available to lower income households and/or SSI recipients.

http://ssdfacts.com/forum/index.php/topic,1363.msg6238.html#msg6238

This topic has information on low income housing.

http://ssdfacts.com/forum/index.php/topic,350.0.html

And, you might also want to check out the programs available at the CA Dept of Social Services. You might find you qualify for food stamps:

http://www.dss.cahwnet.gov/cdssweb/default.htm

I hope that helps.
Pati


The best way to pay for a lovely moment is to enjoy it. (Richard Bach)

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #24 on: February 08, 2011, 03:40:57 pm »
I have recently applied for General Assistance here in Cali. I also got my doctor to sign the paper stating that i am infact disabled and cannot work. So i have a meeting tomorrow and if all goes well, i should get about 200$ bi weekly. Thats def a good thing :)

I also had to personally go pick up my papers from the asshole (scuse) doctors visit because he never gave them to my primary doctor of course. Reading it i wasnt even really surprised

"Plan:
Unfortunately, I told her that at her age she is not a candidate for any kind of joint reconstruction. Her MRI scan, which were performed on her hips were otherwise noted to be within normal limits, other then hip dysplasia. I told her that i did not have anything else to offer her in regards to her overall care. She is wishing a referral for a second opinion to a university center.""

How nice he even admitted to not trying to help me lol.
« Last Edit: February 08, 2011, 03:55:02 pm by BooBerrY »

Trajector Media

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Re: My life is forever changed because of my illness
« Reply #25 on: February 08, 2011, 07:17:50 pm »
Shanna,
     That is good news.  Any income at this point is a huge help.  Also, the letter from your doctor will help your case immensely.  I am glad you have taken the steps to get some help and relief. 
     The letter you quoted, is that from the same doctor that signed the disability letter?  If so, it seems he is contradicting himself.  I would definitely move forward with a second opinion.
Marci
I speak from experience not expertise.

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #26 on: February 08, 2011, 08:46:11 pm »
Shanna,
     That is good news.  Any income at this point is a huge help.  Also, the letter from your doctor will help your case immensely.  I am glad you have taken the steps to get some help and relief. 
     The letter you quoted, is that from the same doctor that signed the disability letter?  If so, it seems he is contradicting himself.  I would definitely move forward with a second opinion.
Marci

Oh no, my primary signed the form saying that i am disabled so i can get general assistance. The doctor that wrote the report is the horribly mean doctor that i saw who did nothing to help me.

sikntird

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Re: My life is forever changed because of my illness
« Reply #27 on: February 08, 2011, 09:40:48 pm »
My heart goes out to u! Perhaps someday u can help with an association affiliated with that disease, and can give insight and support to others who suffer from the disease.
 
Have u looked into subsidized housing or an apartment? That would help ur spirit alot to have ur own domain. I wish you werent sleeping on the floor, that definantley is contributing to ur pain.

I am so sorry u dont have a family to help u. U are so very young to have such dark thoughts, and I wish I could help u.

I am appaled at ur Dr's.. There they go again acting like Dr. Gods..I guess they have no compassion.

I hope u get ur SSI Immediatley.

Wishing you well!
Anonymously  Sikntird

Dragon Fly

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Re: My life is forever changed because of my illness
« Reply #28 on: February 08, 2011, 10:29:27 pm »
Agree with sikntired....when I said "Life isn't over" before I didn't mean to sound like an internet wag of the finger....what I really meant is you never know why we go through things in life. Sometimes, it is so we get very experienced with something, get through it, and in turn can teach others. Your age is in your favor, in that there is so much life ahead of you...miracles can still happen...and are happening all around us...even when we don't realize it.

Example: I was all focused on my upcoming lumbar spinal fusion, It was all I could think about. I was dreading every second of it, recovering from it, it not working, the vost, the help I will need, etc. I had those "Why Even bother!" thoughts so many times. Then suddenly, the ovarian cyst came along. And I started thinking perhaps I had cancer. And I found myself feeling like the lumbar fusion was the furthest thing from my mind. When I found out it was not cancer, but my ovary needs to be taken out, again, right off the train tracks I went. But it has somehow brought a new calm over me. I can't explain why. but I have been thinking about how I demanded to have the SI joint MRI. I didn't know why I was demanding.Just was. Then by mistake they spotted the cyst. My back surgeon said it could have been a really bad scenario if I was on my belly for 6 hours and it burst without him knowing it was there...then my sponsor's husband called yesterday. They were out hiking and she slipped, fell, and broke her hip and wrist. She just had hip replacement surgery today....life changes on a dime....a silly cliche but it's so true. It can be taken away tomorrow. And often times what feels like a hellish curse today may become your greatest asset tomorrow...

That's what I like to believe anyway...because then every single challenge, even when I'm feeling like dying, is a chance to see things a different way and maybe help someone else.

Much love,
>;<
Dragon Fly
"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

BooBerrY

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Re: My life is forever changed because of my illness
« Reply #29 on: February 09, 2011, 04:21:20 pm »
Thank you both, Dragon, and Sik. I appreciate your words very much. I come with more bad news today i'm afraid. I was so sure that i would be getting GA (general assistance), but my luck i was denied. I was denied because my husband gets unemployment. Barely 300$ a month. Apparently that's too much funds to give me assistance, despite being disabled, and we're expected to live off that. It was another heartless person i'm afraid. They said i could appeal it if i wanted, but there's no use really. I dont have the energy.

I still need to appeal my i think it's SSI? I was denied within basically a week because i have no work history. Wish i had better news today but, i don't. I had pancakes for breakfast though, they were good :S