Social Security Disability

pattyanny said:

SSI - Disability
I am curious myself, if I should apply for SSI disability, as I had been on unemployment, but that has run out. Things are getting a bit tight around here, with two teens to feed, and a mountain of medical bills.I am wondering whether to check into these benefits, but feel a bit guilty after being on unemployment. Hate being on the "dole".
My "loving and compassionate" hubby told me to "Get a job, your 6 month Pet was clean, so what's the problem?" (??????)I just asked he if he was out of his mind?!!! But I digress.
I had a sonogram today, have a CT on Monday, an MD appt on Friday, ENT etc etc, as we all know, and that is just this month. In my spare time, I try to fit in 3000 -4000 calories.
Hope to also get the port out next month, if all is well with CT and tests. I am sure a prospective employer would surely understand a few days off! (NOT!!!!) I have to laugh!

Any thoughts? Maybe I have lost MY mind! Hee Hee!
Thanks for all your informative, and amusing posts, but most of all being my sounding board. Love and Healing Prayers to all! Patty

sweetblood22 said:

Pattyanny
I am mostly over feeling guilty about applying. My idiot ex was mad at me for contributing to a 401k, buying McDonald's stock since I worked there, and for purchasing disability insurance that I paid for out of my check every week. Thank GOD I did these things. As far as being on the 'dole'. You paid into disability every time they took taxes out of your check.

I have had a couple of people say that they think I should be able to work. NOT. I am really trying to gain the weight back, but I am still struggling. Plus the pain, fatigue, limited neck mobility, weakness in left arm, peg tube still in and not being able to eat and swallow actual food......please. I keep trying every day to move forward. I hope one day I will be able to go back to work. I really was a work-a-holic and loved managing people. I loved my shoe store, but as I was getting older the extreme long hours was getting to me. I think with the fanconis anemia and now after the battle with cancer, I also just cannot seem to shake this horrible fatigue.

Keep us posted with the scan. You know what your body is capable of doing. I would apply and don't feel guilty. I could see if we were lying, or scaming the system, or stealing, but certainly we are legit, and qualify. The great 98% of the people who know me, know what my work ethic was like, and how I worked like a madwoman for almost 25 years despite my FA. So they know if I say I cannot work, they know I mean it. The other two percent are weanies.

sweetblood22 said:

backache
Sorry about your hubby. I read on the other thread that they took his peg out despite continued weight loss, and stuff.

I actually have not recieved my check yet either. I think it will come the 4th wednesday of the month. They said it goes by the first letter of your last name, so I read that is when the 'S' names go out.

I could never live alone on my income either. Thank God my parents are allowing me to live in the place that they purchased for my grandparents. I am stuffed in a tiny room, and living with my 84 year old grandmother. It's maddening, but what am I going to do? It is hard to be 42 and have no privacy. Also my gram is getting extremely senile, so it is challenging to say the least. This was supposed to be a temporary situation after my divorce, but then the house I put a deposit on fell thru, and a month later started my battle with cancer. I am glad that my parents let me come back home. The night I left I had no clue where I was going to go, but I knew I was not going to stay with my cheating ex.

Just the thought of Listerene in my mouth makes me literaly physically ill thinking about how much pain my mouth would be in if I put that in my mouth. Ack. Forgive me but do you think your husband is in a bit of a self destruct mode? You said he is not even trying to maintain weight or gain, and taking that PEG out, I would be nervous. As much as I hate mine I know I cannot take mine out yet. I still need to gain more weight, and if I try to just get enough calories by mouth, and skip my nightly feeding with the pump, I will lose at least a pound to two pounds in 24 hrs. I always have my dad or my step mom with me at every appt I go to. I am suprised he won't let you come. I must be too pushy, because if that were my husband, I would be going with him, and I would be rating him out to his doctors. But that's just me. I don't think you are wrong in thinking something is amiss. Maybe he is battling depression? I would be having some serious chats with him. Hope I have not overstepped my bounds with my post. Apologies if I have. I tend to be a very direct person. Good luck with his up coming surgery. Best of luck to you both.

sweetblood22 said:

roomates
you would take one look at my room and want me out. :-D It looks like a bomb went off in here. In my defense it really does not help that I have all my stuff crammed into one room. I even had to get a tiny fridge for my room. My gram was eating my ice cream when I was at the point when that was all i could eat. Vanilla shakes. I was down to 88lbs, and I could not keep the formula down. The shakes were it. I was lucky if I could get a couple of those down in a day. A couple of times I went to the freezer and she had eaten all of my ice cream! I had nothing to eat. We are in an extremely rural area. The closest little store is 10 -12 miles away, and closes early. I was so mad, (i even write a nice little note that says it is mine, please don't eat it, and she does anyway) I let her have it with both guns. She swore she forgot. I knew she was lying. Then when she went up to dinner at my parents my step mom said she was laughing at the dinner table, saying that I was yelling at her and was mad that she ate my ice cream. Big joke, when I am 88lbs. I know she is old and I should be patient, but when you are miserable, half starved and can barely get out of bed to pee, well patience is in short supply. So, my friend got me a mini fridge for my birthday gift. I love it, and it saved me from doing the tarantella on my grandmother's head. I am like you, i cannot eat when stressed, never could. All of my friends are the opposite. They are stress eaters. They are always offering to share their extra pounds with me. Would that I could.

You hang in there too. I think it's amazing you are getting down 3000-4000 cals a day. That is so impressive!

pattyanny said:

Okay Oscar Madison!
Hey, you would be a welcome change from living with my hubby Felix Unger! (You are probably too young to remember the Odd Couple!) I laughed at Gram eating your ice cream, because that's what happens here. He even tried to eat my fiber bars, but said "he could not bite it and threw it away." Thanks! ($5.49 a box) Everytime I go to get something I KNOW was in the fridge an hour ago, it has disappeared! It's like a magicians' box! Arghhh! I know how you feel! It was a great that your friend got you your own fridge.
One thing I will never understand is the lack of understanding and compassion, especially seeing you at 88 lbs! I am picturing you doing the tarantella on the old lady's head! Lmao!
As I said, I am TRYING to get those calories in, but not always successful. The VHC drinks are 560 each, so I make up with them. I try to have those creamy found the "Soupman" -like on the sitcom Seinfeld, and they make delicious high calorie creamy soups! It is difficult to find high calorie food, with all this "obesity crap" going on here in NYC.
I hope you are bulking up sweet, and I admire your strength... you keep me going!
Keep eating, and know you are in my thoughts and prayers. Love, Patty (Almost Fatty)

sweetblood22 said:

aww, you guys have your plates full
I am glad that they will be hearing from you. You need to go to bat for your hubby when he can't. I suffered for years with SEVERE depression and anxiety, even before I was diagnosed with my FA and HNC. (I can remember being severely sick and very anxious even as a young lady in grammar school. I had every single symptom of generalized anxiety disorder, and my clinical depression was extreme. it came to a nightmare explosion for me in 2005. I had a pretty bad snap, and a breakdown) My mother is bi-polar, and I have a lot of depression on the "sweetblood" (dad's) side of the family. Part of the joy when you suffer from a problem like this is sometimes you don't take your meds. I know better, and you think I would. But no, I can be stupid and stubborn sometimes. I had stopped for a while, and I realized that they ARE needed in my case. I am begining to feel balanced again. Back on my meds.

I wish there was a way your hubby would listen to the doctors and take what they perscribed. It literally changed and saved my life in 2006. Best of luck my dear. praying for you both.

sweetblood22 said:

oh no.
No insurance? I have been there in the past and it is a scary thing. Even with the insurance i am still fighting with the hospital about my bills, so I understand. Were you on COBRA? I know they said my payments which are $415 a month, will be going to like $620 a month. But they never said anything about dropping me. I don't think they can. I am not sure how they can drop you? I know with my insurance, I have a case manager. I did not want to do it, but they actually forced me to. If I did not take a case manager they would not authorize my liquid nutrition, whihc at the time, was the only thing I was surviving on. Do you have a case manager or advocate there that you could call.

"I am on several Narcotic Meds and they have to be paid out of pocket until they get the paperwork back and Premium"

so does that mean you will have insurance again once you pay? Like maybe getting on COBRA? If that is the case, then you can resubmit your perscriptions once they reinstate your insurance, and it should go back to the date that the regular health insurance was cancelled. You should actually really have no gap in your coverage. At least that is how it worked for me.

Also, since you are disabled, you should be eligable for medicaid? And since you are both not working, I would talk to the billing dept or finance dept of the hospital, or contact patient advocacy about seeing if you can fill out and apply for financial help. you may not have to pay, or may get help, or may pay less depending on your income. it is worth a shot anyway, good luck.