Going on Disability pros and cons
Hi everyone
Here is a topic that I have not seen a lot of discussion on. I know there is a thread for questions regarding the process of applying but I wanted a forum for discussing the emotional and practical aspects of living on SSDI.
Comments
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I went on SSDI after my second local recurrence. I have worked and paid into the system since the age of 14 and I am now 52 and must admit that I was shocked at the low amount that 38 years paying in bought me. It was not an easy decision to put my career on hold and take some time to get a good grip on my health, but I am so glad I did. Time to think was a new thing for me as I have always worked full time, raised two children, and put my self through grad school at the same time.
Time to think has had both negative ( all my fears having time to fester) and positive outcomes. I have had time to think about how I want to spend the rest of my life.
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I am 45 and got approved for ssdi. I just had bmx after 7 months of chemo and have not told my work that I am probably not coming back. Right now I have 6 weeks scheduled off. We have no paid vacation or sick leave, so it was apply for ssdi or nothing. Well, I got approved and now am having a hard time thinking of not working, even though it was near impossible for me to work during chemo, as I work on my feet. I know it is best for me not to work right now but I too have always worked. I need to get healthy, that must be our top priority right now! Of course the income is a big con, but at least I get insurance through my hubby. Pro's include no more juggling appointments, no worying about whether to call in sick when not feeling well, wearing a stupid wig that makes me want to faint! Don't have to worry about catching a cold or virus from clients or co workers because of low blood counts. Oh, this is really helping me realize I shouldn't be working right now! Thank you!
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Bak94
I'm so glad this thread helped you. That was my intention when starting it. BC.org has been an absolute sanity saver for me and I want to pay forward that support. Thank you for posting, lets see if we can help some other ladies let go of the fear of leaving work and take a break for their own best interest. It is very difficult as most of us are used to taking care of everyone else, and for me it was a big leap of faith to let go of my position that I had worked so hard to obtain.
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I went on disability during my treatment, and it was the best thing I ever did. Not sure how I would have gotten through chemo while working, since I was on a dose-dense schedule, every 2 weeks. I was lucky to have short term disability through my job for 6 months. During that time, I focused on myself and my health for the first time in my life, and I didn't feel the least bit guilty! Was able to cover my basic expenses, too. My disability ran out toward the end of radiation.....I was completely exhausted but had to go back to work. Mistake! Wish I had applied for SSDI at that point because I really wasn't ready physically to go back. Once I went back, people thought I was "done" and ready to take on my old work load....they didn't understand how much BC treatment takes out of you. I would advise anyone to take off as much time as they can!
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I had no idea you could get approved for SSDI for stages 1 and 2 bc.....
Anyways, since SSDI is calculated based on your earnings of the last 5 years, I don't really see a con except for the 2 year gap one would have to wait until medicare kicked in (assuming they could not afford COBRA and/or had no spouse whose insurance they could fall back on).
Merilee, just curious...were you working (full-time) at the time you applied for SSDI? Were you working when they approved you?
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I took a medical leave and then applied. I have nerve damage from chemo which affects my right arm and hand, my feet as well. I had stitches in my right arm from smashing a fish bowl when my arm spasmed while I was carrying it. My left ear went deaf while on Tamoxifen during my original diagnosis, I had just buried my brother who died of cancer while I was going through my second chemo and I have a crappy case of PTSD. My work was extremely stressful and required me to supervise troubled tots, which I clearly was in no shape to do.
Thank God who ever read my application took mercy on me and approved me. I did hire an attorney to represent me, but it never became necessary.
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The company I worked for was great helping me and directing me to the help I needed. I have stage IV from the start. I went on disability about 2-3 weeks after biopsy as I had so many doctor appts with scans, MRI, chemo, surgeries etc. that I was not able to work. I went on state disability for 6 months and then LTD. Being on LTD, the company required me to apply for SSDI. I got approved within 4 weeks with a compassionate allowance (stage IV & ibc).
I'm retired from my company, but they continued my medical insurance the first 2 years. They did require me to apply for Medicare since I'm 2 years out from SSDI now and they will cover me as a secondary medical insurance after Medicare. The only thing they dropped was dental & eye exams. Did you know that medicare does not cover eye exams?
I am very grateful my company helped me to get the help I needed.
Terri
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Merilee, may I ask how long it took them to approve you and then how long it took them to send you your first payment?
PTSD, I hear ya....I rent a room from my mom who is nasty, bitter and mentally ill, but functional. It is all I can afford, and I hate where I live. There were times during and after chemo when I was so depressed at my overall situation I seriously had contemplated suicide. I am feeling better, but each day is a struggle and now have hip pain thanks to the osteopenia from Arimidex - but it beats getting bc.
I work full-time and wish I could at least just go part-time.
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I had to take 9 weeks off from bi-lateral DIEP, I have a disability policy which will help the diffence in my pay. It was longest I have missed work throughout my treatment. I didn't feel a bit guilty staying home, it was nice to not be pressed to work when I wasn't up to it. I've still had to take it a bit easy but I am slowly getting back to normal. NJ
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I applied at the end of May and got my first check Oct 3rd. That gap was very nerve racking, thank goodness I had savings to cover my butt while I waited. I knew by the first of Sept that I had been approved so at least I saw hope at the end of the waiting.
Fearless- I am sorry to hear about your living arrangement, I hope you can find a way to get some peace.
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Thanks, Merilee....and I hope your cancer days are over ....you have enough on your plate...
MrsJBand, I am glad you did not feel guilty, because you shouldn't! No woman going through this should ever have to feel guilty if she needs to stay home. Treatments and surgery sure take their toll, even on the strongest women.....
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would it benefit me to apply? I've got 13 more weeks of chemo. then I can go back to work. I'm a nurse and work PRN-usually about 3 days week before this mess happened in sept. I think I can go back sometime in march. I really want to go back to work. miss it terribly. radiation will cont after. but will just have to work around it
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Fredntan, SSDI is for long term, so I wouldn't - since you wish to return to work. However, if you change your mind, be sure and apply BEFORE you return to work. You will not be approved if you are working (and making more than 1K a month gross.
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Yes If I were you I would apply. Not to scare you but radiation was a lot rougher than I expected, and there is no way I could have worked through that. Especially the last two weeks. Remember also that you are going to have a ton of appointments for a while, none of them fun and the stress level alone is enough to wear you down. If you can take time, I strongly advise doing it. Not to mention that in your profession you put yourself at great risk with a weakened immune system from treatment. I was also surprised at how much radiation lowered my white blood count. I was not expecting that and it is still low 2 months after.
I don't regret it, I have had to make major budget adjustments but having time to get well from the treatments has been a Godsend.
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Merilee, so true about the appointments! That alone wore me out! Seems like every day I had a doctor appointment or was getting poked and proded for something.
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Right and if you have PTSD, which many of us do, each appointment is very traumatic as we fret about what they might find.
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That doesn't even include the financial worries for those wondering how they might even pay for treatment. I remember my first thought was "how am I going to pay for this"? Fortunately, I had good insurance. I just didn't know that at the time, and wasn't sure what all it would cover.
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I know my insurance has paid out well over $100,00. Just obscene!
With 2.5 million of us out here, those medical companies are raking in the dough-but maybe that should be a whole thread to itself.
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I am not doing chemo at present... however am on Femara and xegvea..and i work full time as a custodian which is hard physical work... I was stage iv from the get go with node involvement up to my neck and mets to rib,spine,femurs,pelvis sternim and a rib.... and then the pet scan also detected the other breast as well but cat scan was unable to locate it to biopsy.(ILC)..I am so exhausted (also overweight which i hope to work on )..BUT I carry our insurance (my hubbys cost 250.00 per week at his work). I need tokeep working however it is hard, we have no savings left and no short term or long term disability. Cobra would be around 1100.00 per month so how would we pay that until the first check comes in .? so my nerves are shot as I worry that when I do have progression and need chemo we will be out in the street ! its a no win situtation and I am drowning ............ wishing i could just end it now ...I am not depressed just scared ! i have a positive attitude but am soo fricken angry trying to figure a way to keep living without being in a ho meless shelter! looking for any words of wisdom as I am just beside myself ...
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Rosie, I am so sorry to hear all you are dealing with. I wish I had some answers for you.
Your situation is outrageous and should never happen. It seems to me that there should be some sort of emergency program to get you on Medicare. I have also heard that once you are on Medicare that they can back date any outstanding medical bills that have been related to your current diagnosis. Any one know if this is true? Have you contacted a Disability lawyer? Many don't charge a fee up front but take a percentage of any back $ that they can get the SS office to pay. So in the long run it really doesn't cost you anything to get things rolling.
The other thing, if you havn't all ready, is to pick the brain of the social worker where you are receiving treatment. They often know of helpful resources.
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I went on SSDI but my situation is a little different. I took a severance package from my company 2 1/2 years ago and then went on unemployment. A few months later I had my first BC diagnosis. I continued looking for a job but nothing was happening so a few months turned into almost two years of not working. In the meantime I had my second diagnosis. I applied for SSDI because I knew it would be almost impossible to be hired with so much going on - chemo, surgery, rads, etc. I was approved a couple months later and I received a generous lump sum payment because SSA determined my official disability date to be at the time of my initial diagnosis (I had used the date of my second one). I am 61 so this is it for me, I'll not work again. I started collecting my pension from my previous employer and I'm getting full SS as if I had worked until I was 66. I am already 61 1/2 so they didn't even put a review date on my approval form. I'll be going on Medicare next October which means my DH can retire a little early. We can cover COBRA for one of us...two would be prohibitive.
The pros - I have time to spend with my family - my mom, my grandkids, etc. And I don't have to worry about conflicts between work and medical needs. And when I need a nap, I can just take a nap!
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I just don't know how you do it Rosie! I don't think I could have worked full time with all of my appointments and treatment, I had a hard time working part time. It is sad that we don't have a better medical system for situations like this. If my husband didn't have a job with benefits we would have been screwed. We still have alot of medical bills we need to pay, can't imagine what we would be paying without it. My heart goes out to all the women (and men) who have to work while in pain so they can get insurance to pay for their illness. The 2 year wait for medical insurance is crazy for those qualified for ssdi, what are they suppose to do in the mean time? Before I got married I had to get insurance on my own, my company does not offer it. I can't believe how much the cost went up while I was on it. My deductible was up to 1000$ with 80/20, plus a copay. I am sure it is much worse now because that was over 10 years ago!
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That is crazy...there should be exceptions for stage IV ladies. They shouldn't have to wait 2 years for Medicare...
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Ladies: I had to pipe in here because yesterday I sent off emails to Obama and my senators about the government's irrational "no healthcare" programs. My bitch was about the PCIP useless program which expects people with chronic medical problems to wait 6 months without insurance before they can apply. This 2 year wait for SSDI Medicare is another one of my pet peeves. Even if one if fortunate enough to get approved for SSDI you would have to spend most of what they give you paying for "insurance"! I think if enough of us flood Washington, Obama, and our senators about this serious flaw in the system, maybe, they will do something about it. I have been sending them emails for over a year about this serious problem in our US "no-healthcare" system but with no results. Maybe they just have not gotten enough people angry about it to do something for us. We can only hope!
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Good, Medigal...I agree. At the very least, I have wanted him to re-instate the Cobra Assistance bill that expired awhile ago.
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I think paper letters that all arrive on the same day to the white house would be more noticed. There are 100,000 of us on this forum. How about it Moderators, can you help us organize? I'd be willing to write a letter to make sure all sisters have health coverage with a BC diagnosis. I think we should mention that there were 240,000 new cases of BC in the US in 2011. I think the center for disease control should be all over this!
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I think that is a wonderful idea!
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Merilee: I think that's a great idea to "flood" them with letters on the same day! However, it should not, imo, be just for those with BC. My DD has a horrible chronic disease which costs a fortune to maintain and she can't survive without healthcare insurance. We have her on COBRA but fear for the day when it ends even as costly as it is. This country needs to provide some way for ALL those who need healthcare insurance to get it at a resonable cost. I suggested to them that they allow these people to buy into Medicare if they can't come up with something better. But we need to fight the good fight for ALL people with chronic pre-existing diseases, imo. This country is like a 3rd world country when it comes to how they are handling healthcare issues!
I think we should pick a day to write the letters and and maybe come up with a good "sample" letter to use and work around it. I send the same letter to all the people I write to. Just copy and paste it to each name. That way we can do a lot of senators in one day. I would like it to cover ALL these people in need and not just focus on bc. If you ladies decide this is something you are willing to do, I will be more than eager to join you.
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Hello all, I went on disability while getting treatment for I too received treatment 2 weeks on and 2 weeks off, just when I was feeling better it was time again,I too have been working since I was 14 yrs old, and I worked all those yrs full time and lon periods of time at each position, and was so surprise at the small amount I received after them taking so much out my pay, I went back to work after treatment and after I was married, and after going back to work for 2 yrs I was put out on permanent disability for I now have a Pacemaker/ Defibrillator, but doing fine, Praise the Lord. But with that said I would not have wanted to work and couldn,t have worked during that time. God Bless.(idc, stage 2, 3 nodes, L mast, chemo rads, tamoifen for 5 yrs.msphil
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Medigal- I agree with you, my best friend is a transplant recipient and ends up in what is called the donut hole every year. She must have her medicine or her body will reject the transplant, and I have seen her sell things to get the money. The Kroger pharmacy near my home has been robbed 2 times in the last 2 months and both times it was someone getting their rx. Very sad indeed.
I was hoping the moderators might post a good letter that people could print off and use, or at least use as a model. Then put a side bullet on the forum so that others would see it.
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