Social Security Disability

beaver1
beaver1 Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
Second bout with Malgnant Melanoma on my right neck. Diagnosis fortunatly is good. After surgery anyhow and now heading for some Radiation Treatments. That required some teethe removal for the radiation treatmennts. And with the disection of quite a few of the tendons in my shoulder it now droops a bit.

Have applied for social security about disability. It is quite a process and wondering if anyone might have some insight to the process.

Thank you
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Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Hey Beaver. I finally
    Hey Beaver. I finally applied for Social Security Disability and got it last month. I have been out of work since January 7th? of 2009. If you have already applied, that's good. I had a company that did it for me, because I was on disability from my work thru Unum.

    After I filled out paperwork and they applied for me, a SSD employee called me to interview me over the phone. Took about an hour or so. The SSD employee told me that they do usually put cancer claims ahead of the pack. It only took a couple of weeks and I was approved.

    I can tell you that if for some reason you get turned down, you can appeal. This happened to my step mom and then she got a lawyer to go to bat for her, and then she was approved. Apparently it is not uncommon to get turned down the first time.

    Then when you are approved, you may be entitled to back pay. I was. Unfortaunately that big check had to go to Unum since they paid me disability for the last 11 months.

    Also after 2 years I think, if you are still on disability you can then be entitled to medicaid. But be prepared that if you are on COBRA for your health insurance, that your premium will go up like 350% !!!!!!!!!!!! Mine will be going from $415 a month to $615 per months. Thank you goverment. Don't even get me started. That is half my income for the month.

    best of luck to you.
  • beaver1
    beaver1 Member Posts: 7

    Hey Beaver. I finally
    Hey Beaver. I finally applied for Social Security Disability and got it last month. I have been out of work since January 7th? of 2009. If you have already applied, that's good. I had a company that did it for me, because I was on disability from my work thru Unum.

    After I filled out paperwork and they applied for me, a SSD employee called me to interview me over the phone. Took about an hour or so. The SSD employee told me that they do usually put cancer claims ahead of the pack. It only took a couple of weeks and I was approved.

    I can tell you that if for some reason you get turned down, you can appeal. This happened to my step mom and then she got a lawyer to go to bat for her, and then she was approved. Apparently it is not uncommon to get turned down the first time.

    Then when you are approved, you may be entitled to back pay. I was. Unfortaunately that big check had to go to Unum since they paid me disability for the last 11 months.

    Also after 2 years I think, if you are still on disability you can then be entitled to medicaid. But be prepared that if you are on COBRA for your health insurance, that your premium will go up like 350% !!!!!!!!!!!! Mine will be going from $415 a month to $615 per months. Thank you goverment. Don't even get me started. That is half my income for the month.

    best of luck to you.

    Thanks Sweeetblood, good for you
    I had a Malinoma in Nov of 2008 removed and went back to work. All was supposedly taken care of. On Feb 23rd i had a biopsy on a node that had swollen which came back a Metestatic Malignant Malinoma.

    So with that I made appointment with Social Security and filed for SSD. From all i have heard it will take five months to get and answer if accepted or denied. As you mentioned typically you get turned down the first time. There is a list of 50 Compassionate Allowances that SS has and i beleive i qualify under one of them for head neck cancers.

    Unfortunaly the waiting and not knowing can drive one Krazy. I am prepared to get an attorney and go for it and will. I applied for my regular social security sense i was turning of age this year. The down side of that is i was going to work till i was 65 so i could get the higher amount. I have a union pension but did not want to take it for another three years either.

    Plans change suddenly. I could just return to work in a couple of months but with this diagnosis i dont feel they know if im truly cured or not this time. It could pop up at any time again. They claim the got it all but they want to do Radiation and follow up with some chemo stuff. I asked why i would need radiation if they got it all. they pulled the weed they said and this is like putting weed killer on it. Well i dont think they realy know that for sure.

    So with all that said. Sheesh

    One has enough to battle it is just unfortunate that SSD becomes such a stresful event.

    Take Care and i hope all is going well for you
    Thank you for the information
  • Scambuster
    Scambuster Member Posts: 973
    MCP ?
    Hi Beaver,

    off topic a touch but I have been taking MCP (Modified Citrus Pectin) as it has shown in some studies to have some effect on preventing mets (with melanoma). You may want to google it and check it out -there are dozens of sites & report on it.

    It comes in a powder form. I couldn't take it for a few months after my Rads and Chemo (SCC of left Tonsil) as it burned like hell. It's fine now and I take 1-2 teaspoon a day in my morning shake.

    Your doctors may scoff at the idea but if it doesn't interfere with your treatment, might be worth considering. My view is to hit it with all barrels.

    All the best
    Scambuster
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    beaver1 said:

    Thanks Sweeetblood, good for you
    I had a Malinoma in Nov of 2008 removed and went back to work. All was supposedly taken care of. On Feb 23rd i had a biopsy on a node that had swollen which came back a Metestatic Malignant Malinoma.

    So with that I made appointment with Social Security and filed for SSD. From all i have heard it will take five months to get and answer if accepted or denied. As you mentioned typically you get turned down the first time. There is a list of 50 Compassionate Allowances that SS has and i beleive i qualify under one of them for head neck cancers.

    Unfortunaly the waiting and not knowing can drive one Krazy. I am prepared to get an attorney and go for it and will. I applied for my regular social security sense i was turning of age this year. The down side of that is i was going to work till i was 65 so i could get the higher amount. I have a union pension but did not want to take it for another three years either.

    Plans change suddenly. I could just return to work in a couple of months but with this diagnosis i dont feel they know if im truly cured or not this time. It could pop up at any time again. They claim the got it all but they want to do Radiation and follow up with some chemo stuff. I asked why i would need radiation if they got it all. they pulled the weed they said and this is like putting weed killer on it. Well i dont think they realy know that for sure.

    So with all that said. Sheesh

    One has enough to battle it is just unfortunate that SSD becomes such a stresful event.

    Take Care and i hope all is going well for you
    Thank you for the information

    SSD
    Hi beaver1,

    Hopefully, you will be approved and not have a headache dealing with this along with dealing with cancer. If you are denied, you then can find a Social Security Lawyer that deals only with Social Security. When you find one, they can only charge you the max. of 6 months benefits for their service. This gets paid by Social Security directly to the lawyer from your settlement first. The balance then is sent to you and then you receive your monthly payment.

    As sweetblood22 mentioned, after a 2 year wait,from the date you first applied, you will be put on Medicare, as if you were 65. I hope everything goes smoothly for you.

    My Best to You and Everyone Here
  • pattyanny
    pattyanny Member Posts: 544
    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
  • backachedp
    backachedp Member Posts: 132
    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

    Social Security
    My Husband was Diagnosed with Tognue and Jaw and Pallet Cancer Stage 4 Sept 29 2009 I went to the S.Sec Office right away and because of his Dx he was approved right away. He has not received a check yet we were told his first one would be April, it did not come I called they now said May third Wednesday..we will see....I am sure he will get it, but we were hoping it would come last month...most Cancer Patients I have heard get approved right away depending on stage and Dx. One thing that bothered me was the woman I spoke to there said you better hope he lives till you turn 50...I said what? She said if he passed away before I am 50 I would not be entitled to his Benefits until I am 50. I have been diabled since 2002 and could never live off my income, but he will get better. He will be having Surgery May 17th on his Tognue and 2 nodules in his Chest. He and I cannot believe it bought a bottle of Listerine and he has been loosing pieces of his tognue it looks like tobacco in the sink..shower...he will not make that mistake again. He tried to tell me it was from his teeth. He also said it hurt so bad...he has all the mouth stuff for dry mouth etc...why on earth would he do that? I hope he learned a lesson. This has been such a struggle for both of us. Most of all him, but it is taking a toll on everyone in our family. Better Days ahead...
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    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

    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
    sweetblood22 Member Posts: 3,228

    Social Security
    My Husband was Diagnosed with Tognue and Jaw and Pallet Cancer Stage 4 Sept 29 2009 I went to the S.Sec Office right away and because of his Dx he was approved right away. He has not received a check yet we were told his first one would be April, it did not come I called they now said May third Wednesday..we will see....I am sure he will get it, but we were hoping it would come last month...most Cancer Patients I have heard get approved right away depending on stage and Dx. One thing that bothered me was the woman I spoke to there said you better hope he lives till you turn 50...I said what? She said if he passed away before I am 50 I would not be entitled to his Benefits until I am 50. I have been diabled since 2002 and could never live off my income, but he will get better. He will be having Surgery May 17th on his Tognue and 2 nodules in his Chest. He and I cannot believe it bought a bottle of Listerine and he has been loosing pieces of his tognue it looks like tobacco in the sink..shower...he will not make that mistake again. He tried to tell me it was from his teeth. He also said it hurt so bad...he has all the mouth stuff for dry mouth etc...why on earth would he do that? I hope he learned a lesson. This has been such a struggle for both of us. Most of all him, but it is taking a toll on everyone in our family. Better Days ahead...

    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.
  • pattyanny
    pattyanny Member Posts: 544

    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.

    Hi Sweetblood
    Yes, you are right, I have worked for 35 years and that is what it is there for. I guess I just hate the idea of coming to the realization that I truly cannot work. I have been pretty independent all my life. It is a good thing you took care of your investments (401k & stock), I have my Dad's small inheritance I invested in a private a/c, after taking care of some family expenses. My hubby is still angered at me for that.
    I understand about, if there was a possibility of working, you would. I feel the same way.
    I had an offer for 3 days a week job, but had a bad feeling about it. I need to be available for my 15 yr old daughter and my Mom at the N.H. If I don't show up every day or so, they will kill her. I am also very fatigued, and am up in bed at 6pm.
    I am so sorry about your issues with eating, fatigue, and swallowing etc. You are one tough cookie, and will get thru this too!
    Your living conditions are less then ideal, but at least you had somewhere to go, like you said. And also the support is very important.
    I know because I do not need the stress either. I do not eat when I am stressed.
    Hey Sweet - wouldn't it be great if we could be roommates? Now that would be great! We could open a house for people like us, with just our pets, big backyard, and lots of nutritious drinks to eat. No stress - just healing! Hey, this may be an idea - a Healing Home. :)
    Stay strong sweet, you are always in my prayers! Love, Patty
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    pattyanny said:

    Hi Sweetblood
    Yes, you are right, I have worked for 35 years and that is what it is there for. I guess I just hate the idea of coming to the realization that I truly cannot work. I have been pretty independent all my life. It is a good thing you took care of your investments (401k & stock), I have my Dad's small inheritance I invested in a private a/c, after taking care of some family expenses. My hubby is still angered at me for that.
    I understand about, if there was a possibility of working, you would. I feel the same way.
    I had an offer for 3 days a week job, but had a bad feeling about it. I need to be available for my 15 yr old daughter and my Mom at the N.H. If I don't show up every day or so, they will kill her. I am also very fatigued, and am up in bed at 6pm.
    I am so sorry about your issues with eating, fatigue, and swallowing etc. You are one tough cookie, and will get thru this too!
    Your living conditions are less then ideal, but at least you had somewhere to go, like you said. And also the support is very important.
    I know because I do not need the stress either. I do not eat when I am stressed.
    Hey Sweet - wouldn't it be great if we could be roommates? Now that would be great! We could open a house for people like us, with just our pets, big backyard, and lots of nutritious drinks to eat. No stress - just healing! Hey, this may be an idea - a Healing Home. :)
    Stay strong sweet, you are always in my prayers! Love, Patty

    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!
  • backachedp
    backachedp Member Posts: 132

    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
    I was ratting him out in the begginning that's why he won't let me go he was in so much pain and looked like Death and said his pain was at a 2 I said NO IT'S at LEAST 8 or 9..he got very upset and the Dr's said don't get mad at her get mad at us...we have been having issues with his Mother who is in a Home now she was put there the day he was dx'ed we took her..she had tried to OD...we have been going to court to try and help her as his siblings have been doing things to thier Mom that we totally disagree with..our Son's Fiance's Mother is dying slowy from a disease called Cortobasal it is a horrible disease..we have enough stress on our plates and my husband was so upbeat and fighting to gain weight before and it's almost like he's giving up..I really don't know if its all the family stuff or he is just fed up with having Cancer and his upcomming Surgery, but tehy WILL be hearing from me! For him to even have soup liquid nothing with meat or potatatoes...he has to take his Oxycontin...oh yea they did wrong, but I also fault him for not being truthful...I don't care if he hated it...it was keeping him looking healthy..now his 30 inch waiste pant's are falling off of him:( I is just NOT RIGHT....they should have seen that he is loosing weight..that is thier fault. They did rx a antidpressant but he will not take it..just like in the beggining he was not taking enough pain meds now I think he is taking too much...your life does not sound likemuch fun eighter...I hope u can get a place of your own soon..it is hard to live with someone who has Dimentica..we had his Mom for 4 day's and it was very very hard...and yes the Listerine I do NOT know What the heck he was thinking...he has been suffering since and has plenty of the other mouth rinses he is supossed to take...Men...I will keep u posted on what they tell me when I call he has 3 appt's this week...they will see that he is probably down to 115 by now...:((
  • sweetblood22
    sweetblood22 Member Posts: 3,228

    sweetblood22
    I was ratting him out in the begginning that's why he won't let me go he was in so much pain and looked like Death and said his pain was at a 2 I said NO IT'S at LEAST 8 or 9..he got very upset and the Dr's said don't get mad at her get mad at us...we have been having issues with his Mother who is in a Home now she was put there the day he was dx'ed we took her..she had tried to OD...we have been going to court to try and help her as his siblings have been doing things to thier Mom that we totally disagree with..our Son's Fiance's Mother is dying slowy from a disease called Cortobasal it is a horrible disease..we have enough stress on our plates and my husband was so upbeat and fighting to gain weight before and it's almost like he's giving up..I really don't know if its all the family stuff or he is just fed up with having Cancer and his upcomming Surgery, but tehy WILL be hearing from me! For him to even have soup liquid nothing with meat or potatatoes...he has to take his Oxycontin...oh yea they did wrong, but I also fault him for not being truthful...I don't care if he hated it...it was keeping him looking healthy..now his 30 inch waiste pant's are falling off of him:( I is just NOT RIGHT....they should have seen that he is loosing weight..that is thier fault. They did rx a antidpressant but he will not take it..just like in the beggining he was not taking enough pain meds now I think he is taking too much...your life does not sound likemuch fun eighter...I hope u can get a place of your own soon..it is hard to live with someone who has Dimentica..we had his Mom for 4 day's and it was very very hard...and yes the Listerine I do NOT know What the heck he was thinking...he has been suffering since and has plenty of the other mouth rinses he is supossed to take...Men...I will keep u posted on what they tell me when I call he has 3 appt's this week...they will see that he is probably down to 115 by now...:((

    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.
  • pattyanny
    pattyanny Member Posts: 544

    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!

    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) :)
  • rozaroo
    rozaroo Member Posts: 665
    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) :)

    Speaking of food!
    After reading your posts on food & not knowing wether to laugh or cry! I hope someone can answer this question. I never get hunger pain's & I am wondering if this is normal. I am on the peg in the morning but trying to replace afternoon & evening feeding with shakes or ensure. I really want rid of this tube but I never feel hungry. I am trying to make sure I
    don't loose an weight etc.My Dr said if I eat for a month steady he will take the tube out.
    It is so difficult when the only thing that tastes ok is the sweet shakes or ensure. I miss
    real healthy food but my taste bud's are not back yet. I am two month's post treatment.
    Thank you
    Roz
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    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) :)

    yes i am that old
    i would like to say my room does not look like oscar's. i would like to, but i would probably be lying. you have to move here tho....i don't wanna go back to NYC. it is so quiet and private, green and beautiful, and no people around here. i like it that way now.
  • CajunEagle
    CajunEagle Member Posts: 408
    rozaroo said:

    Speaking of food!
    After reading your posts on food & not knowing wether to laugh or cry! I hope someone can answer this question. I never get hunger pain's & I am wondering if this is normal. I am on the peg in the morning but trying to replace afternoon & evening feeding with shakes or ensure. I really want rid of this tube but I never feel hungry. I am trying to make sure I
    don't loose an weight etc.My Dr said if I eat for a month steady he will take the tube out.
    It is so difficult when the only thing that tastes ok is the sweet shakes or ensure. I miss
    real healthy food but my taste bud's are not back yet. I am two month's post treatment.
    Thank you
    Roz

    Talking about food
    Yea, I think it is fairly normal to not have hunger pangs (or is it pains?) when using the tube. I know I really never thought about having the desire to put more liquid nourishment down the peg tube, I just followed the hourly schedule that my wife had set up for me. I used 4 8oz. containers of Boost Plus and 5 cans of Two-Cal (480 calories per can) a day during the four months that I was strictly on the tube. Roz....It took me six months after treatment to ween myself of the tube, being that i went through 3 months of therapy to re-learn how to swallow. Once I got the knack of eating solids and drinking teas and water, it took me another month and a half to stabilize my weight.....then two more weeks to get the tube removed. I realize that the tube is a real pain in the behind, and is a mess to put up with, but.....JUST TAKE YOUR TIME. It really won't be long before you will start on salads and sauted veggies. Took me an hour to eat this huge Ruebin sandwich today....but gaaaa-lee that was good. It's gonna take awhile, but you're gonna learn to adapt to a very different lifestyle and types of foods. I seem to put olive oil on so many things that I eat now that I would never touch before. Everyday is a new challenge and I have a great time looking forward to it.

    Larry
  • backachedp
    backachedp Member Posts: 132

    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
    Thank you for your support. Todays delema is we were told we have no Insurance. He was Terminated from his STD and is going on LTD they just sent our the papers on May 6...the premium is very HIGH and we have no proof of Insurance I do not understand any of this. I am on several Narcotic Meds and they have to be paid out of pocket until they get the paperwork back and Premium....none of this makes scence to me..I have been disabled for 10 years and had no benefits so..I know nothing and today we find out our Ins thru his Company is over he is no longer concidered an employee...OMG what next? Do we cancel the Surgery? I cannot take all this MESS..I have had quite enough. Bob has too he siad I guess I better get back to work..he cannot work he is way too sick still sleeps all the time and can't eat....what to do what to do...
  • sweetblood22
    sweetblood22 Member Posts: 3,228

    Sweetblood22
    Thank you for your support. Todays delema is we were told we have no Insurance. He was Terminated from his STD and is going on LTD they just sent our the papers on May 6...the premium is very HIGH and we have no proof of Insurance I do not understand any of this. I am on several Narcotic Meds and they have to be paid out of pocket until they get the paperwork back and Premium....none of this makes scence to me..I have been disabled for 10 years and had no benefits so..I know nothing and today we find out our Ins thru his Company is over he is no longer concidered an employee...OMG what next? Do we cancel the Surgery? I cannot take all this MESS..I have had quite enough. Bob has too he siad I guess I better get back to work..he cannot work he is way too sick still sleeps all the time and can't eat....what to do what to do...

    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.
  • sweetblood22
    sweetblood22 Member Posts: 3,228

    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.

    PS
    I would not cancell surgery. Especially if you are going on COBRA. They will just have you sign a financial liability paper before treatment if you have no insurance. If you are getting COBRA, that will kick in, and you will be covered because it will kick in the last date of the original coverage.
  • beaver1
    beaver1 Member Posts: 7
    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

    Social Security Disability
    By all means you shoud apply. Here is a website that might help. Do not feel like you are on the dole.

    Go for it. You Deserve it and owe it to yourself ! ! !

    http://www.socialsecurity.gov/compassionateallowances/

    https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022190

    https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022015



    When i was diagnosed with a node on my neck this time around i went to the social secutity office right away. Fortunatly i was accepted within two months. It was truly a blessing and will start receiving payments the middle of June. Just knowing that i have the extra funds coming in has releived the stress and tensions from wondering how i was going to handle things financially. Head and neck cancer is one of the compassionate allowances. When one has a compassionate allowence it takes their application and moves it to the front of the line speeding up the process.

    I have other sites from the social security web site if needed.

    I am new here and have not ben on for a few days. Hopefully i will get to know a few people here over time and undoubtebly pick up some good ideas and advice.

    Tomorrow i go for third radiation third radiation treatment and two to follow.

    Take care and God Bless.