How Many Stage 4 Girls are getting SS disability..
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candy, sometimes people treat us women like we don't know what's best for ourselves. Yet we are adults and have been making choices and taking the lead on many things our whole adult lives, I'm not sure how well your onc knows you. Just keep that in mind when weighing her opinion on your situation. I can very much understand your mixed feelings about whether to continue working or retiring on disability. As for tongues wagging behind you back, well....I would have the eff them attitude! Lol. Who really gives a crap what they think. It's your life. Literally.
I don't know what that stage iv man you mentioned who is still working (six years after his diagnosis) does for a living, but if he has any power or clout and authority on the job, that may be why he can continue. Some people work at jobs that are less stressful and/or less physically demanding. Also, men tend to get more of their self esteem from working than women do. And, if he has a wife at home taking care of the home front, that may be helping him out, too. Is your onc factoring all this into the equation when she compares him to you?
At any rate, the choice remain yours one way or the other. Best eishes!
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Thanks Divine-- Yeah men probably do get their self esteem more from working. The MO didn't mention Alex Trebek but that is another one that we can look to and say " He is still working". We (people) tend to place those types on pedestals. Strong, undeterred, a "survivor". While we (those here) are also in the battle, but quietly and not in the limelight.
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Oh my, Alex Trebeck is a millionaire with fame and fortune and all kinds of recognition. His story of currently beating the odds is wonderful, dh and I are Jepoardy watchers, but his lifestyle is far and above the average person’s daily life. Its kind of like Joan Lundon writing a book about “surviving bc” a year after her diagnosis. She has a staff of people to do her bidding and owns houses in several different posh neighborhoods,not to mention the clout to call and get the best doctors and the quickest appointments. Can have a driver take her to and from doctor appointments. Hired help to clean the house, a chef to do the cooking, an accountant to turn to about financial matters and a personal trainer to help her get back to feeling more like herself after her cancer treatment. Typing out that book on a computer and the computer gets a virus? Just call the tech guy. You and me, we would be on the phone all afternoon talking to software support Or she could simply dictate the book to a person on her staff. Sure, that’s great she feels she is a bc survivor, but her story is not the average person’s story, so it cannot be compared to most.0
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Candy, honestly, the first few months of retirement were hard. I was bored out of my mind and missed the sense of accomplishment and friendships I had at work, so I made taking care of myself my new job. When friends asked what I do now, I just explain that I make sure I get 7-8 hours sleep, go to the gym, prep/cook healthy meals, etc. Reducing stress and the risk of new or worsening cancer is top priority.
So far everyone understands that and I suspect your friends would support whatever choose.
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Hi Candy and all, I just wanted to drop in my two cents on the recent discussion here. First, I can say that my estimated SSDI payment was the same as my actual payment but whether that's always the case, I have no idea. I think you'd have to check that with SSDI directly either by doing the online application or by making the appointment to go into the office. I was pleasantly surprised by how helpful, friendly and non-judgmental the SSA staff was when I went in with my questions. Granted, I live in a small community so the office is not as busy (and thus perhaps staff not as rushed) as you might find in Chicago but you just might encounter someone really helpful.
I have been on disability now for about 4 years. I'm too young for regular retirement and friends (who do not know about my diagnosis - or don't know about the metastatic part of my BC diagnosis) do sometimes ask about my work, my time and even my income. You do not actually have to tell the truth at the cost of your privacy and you don't owe them specificity. I had to practice responding with vague answers. I often say that I'm "freelancing" or "consulting." Very few people know that I am on disability and they'd probably not guess it given how "healthy" I look but they also don't know the half of what I've gone through because I don't share it. I just don't want to have to talk about it all the time - but that's just me. Of course, you can share as much or as little as you are comfortable with, without obligation to justify yourself or your decisions.
Honestly, stopping work has been a difficult transition for me because I actually really loved my career and my former lifestyle. I used to travel internationally - including long stays of several months at a time in various places for my job but I simply can't do that anymore. I grieve the lost travel, the camaraderie of colleagues and having an office to go to and especially the intellectual challenge of the work, not to mention the paycheck! But, I find other things to do with myself, I try to take good care of myself and I pursue the things that I used to dream of doing when I worked too many hours.
Finally, if you do find that you need legal help you could consider looking for a disability rights legal clinic. They may be able to help you just through a consultation and you generally pay nothing or only what you can based on your income.
I didn't mean for this to get so long. Sorry about that but hope it's helpful.
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Well I began the process this morning. Oh My Gosh !!!! I may have a real stroke ( not just a mini stroke ) after all this. I spoke with my employer HR dept. First we need to see if I qualify for FMLA-they have the right to deny the claim. Then there is an application process for STD/LTD---they have the right to deny me and say I can still do the job.
THEN I have to wait until the FMLA is exhausted and start on the STD BEFORE I can apply for SSD. THEN THEY have a right to deny if they feel I am not medically disabled and can still do some type of work.
I don't see where the diagnosis of MBC really matters much. As long as I can crawl out of bed and get to work I can be denied. "So you have Stage 4 Cancer, suck it up"
So much fun worrying about all this AND have cancer !!!!!!
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just throwing in my two cents here but I would give anyone with a stage 4 cancer diagnosis an eternal cancer card pass no matter how gorgeous they look!
Candy - I feel like this is one of those things that once it’s over and done with, you may look back and say, “wow that was so much easier than I thought and wow, I am so happy that I did that!”
When I was diagnosed a little over two years ago, I was one year out of medical school (we are talking INSANE amount of student debt!), credit card debt from a failed almost marriage and trusting in someone’s false promises to repay me (I got swindled!) and starting up a new practice. I had to declare bankruptcy on my credit card debt. I just didn’t (and don’t) have the energy to work enough to pay my bills AND pay the debt. So I declared bankruptcy. I judged myself sooooo much for doing this. I cried in front of the judge due to my shame and embarrassment.
And then, poof! In two seconds and a couple thousand paid to an attorney, I was suddenly declared bankrupt and the judge didn’t bat an eyelash. They do this and see this EVERY single day.
Moral of my story for myself: relax! It’s all going to be okay. And there’s no shame or judgement in doing what we need to do to take the best care of ourselves in the light of a serious disease/diagnosis.
I am working to love myself more and feel less guilt around $$$ and all the psychological aspects that it can hold over us.0 -
LovefromPhilly--- Thank you for the encouragement. I know we can only do what we feel is right for ourselves. We judge ourselves more than others do sometimes. And for those handling the cases, yes they see this every day. But also I think there is undo stress added by those people. Just a kind word, acknowledgement of the situation, a "it is going to be ok" remark would have helped me feel better. Instead of "we will review your case and make a determination" "you could be denied".
I told some of my family about my decision. They were supportive. Not what I expected. My sister asked about the timeline-when I am quitting work, when will I get SSD.
This is the timeline as I understand it:
IF approved to change intermittent FMLA (I had already) to continuous status---9 weeks left of FMLA and my sick time (must use sick time up before STD) THEN
IF approved for STD from employer-----17 weeks left at 50 % of pay I would apply for SSD at the beginning of STD THEN
IF approved for SSD----payment would start in 5 months (as protocol with Social Security) SO
I would have SSD totally in 8-9 months from now.
All IF's and they think I am truly disabled. May be denied at any level.
Oh my. A marathon not a sprint. Just like the cancer.
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Ok so you all are probably getting tired of me by now. But this is the Thread for SSD issues so here goes:
Rant--- Is disability a 4 letter word or what??!!!!!! Let me explain. I went to my PCP today for follow up of hospitalization for TIA (mini stroke). We were discussing my lipid labs (cholesterol not bad, but HDL and LDL need work), my carotid doppler results, my blood pressure readings (I have been checking blood pressure at home and keeping a log), etc. I mentioned I am off work right now (FMLA) and thinking about SSD. OH MY GOSH !!!!!! He sarcastically said " You will be denied". I am getting tired of hearing that so I in a clipped tone said " I am not applying because I had a TIA. I have Stage 4 cancer, autoimmune issues (of course he knows about that), and now a TIA". And I said, " I have been researching SSD and they do have a Compassionate Allowance Program for MBC women". There was an awkward silence and then we continued on with the appointment. At the end of the visit I approached the SSD subject again. I said "If I do apply for SSD and they contact you....He jumped in and said " They will request records, not ask my opinion". OOOKKKAAAYYY.
Why is everyone except you all against me applying for SSD???!!!! My job, my PCP, my MO.
Either they all will have egg on their faces when I get it, OR I am going to be very upset if I don't get it.
Others on here ---do you get flack when you applied??
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hi Candy,
I never discussed disability with any of my doctors, I just printed a copy of my pathology report from my online patient chart that showed I had over 10 positive axillary lymph nodes and mailed it in the envelope SSA included with some other paperwork they sent me to fill out. No one with stage 4 breast cancer will be medically denied - the only way it wouldn't get approved is if there was an issue with work history (too few credits or still earning too much). When I worked for SSA, our medical consultants usually just reviewed the path report and that was it. So don’t fret about your own doctors, your medical records will do all the talking for them.
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Candy,
For me, Social Security was interested in the date I stopped working-which was 11/20/16. I was fortunate enough to receive 3 months of ST disability pay, after which my long-term disability from my employer commenced. I think for you too, SSDI will begin 5 months after you stop working. As I recall, my payments from SSDI began as of May 2017 but I didn't actually receive the payment until mid June 2017.
I am pretty sure you will qualify for SSDI simply because you have MBC.
Best wishes as you sort through all of this.
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Momchichi---I would think my records will do all the talking. But someone here, I forget who, said I need my docs on my side. That is why I brought up the subject to them. In case they get a request of records from Social Security. And someone here said that the diagnosis of MBC itself is not enough. I need to show I can no longer work. I am so confused and worried.
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Just checking in. I am currently on FMLA from work using my accumulated sick days. Then I will go to STD. Then LTD. Then apply for SSD. So... The SSD application should be around the middle of Sept the way I figure it. I do worry that I will be denied. But I am going ahead with the plan. Hopefully the proof of the MBC will be enough. Some days the fatigue and pains are pretty troublesome. And I am not going to sugar coat how I feel, I will tell it like it is. Just wanted to check in with you all. I will keep you updated. Thanks for all your help.
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Update- I am starting process for SSD. FMLA now done, on STD with company. Accepted for LTD with company. And, unknown to me till now, my company has a subcontract with a company that helps employees apply for SSD. When I was accepted for LTD they told me that this helping company would call me. They don't charge a fee. I spoke with a representative today and she said to "sit back and let us handle the process. You concentrate on your health". Wow. We will see how things go, but it will definitely be nice if they really will handle the hassles for me. Will keep you posted.
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Great news Candy! My company also had an arrangement like that. I had to fill out paperwork but they shepherded me through the process. I don't see how you would not qualify since you are Stage 4.
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Candy....I'm about 90% sure that I've read this. They do NOT take the last five years of work history for deciding how much SSD you receive. They take the gross amounts from the top five years (earned most money) of all of your lifetime earnings and average those five years. Your SS payments are based on this average.
A phone call to SS would know the answer
Hoping I'm not wrong
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candy, thats a nice development that your company has a company that helps you navigate ssd process! It’s got to be somewhat of a relief to have that type of support for the next step. Happy for you.
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Ladies an update-- Today I had a phone interview with that company that represents me in the SSD process. We discussed my income in 2018 and 2019, my last day of work, my MO and hospital contact info, what meds I am on for the MBC. They will submit my answers to Social Security and I should receive phone call from Social Security in the next few days. Then Social Security will verify the diagnosis, etc and make a determination. The company stated that I should not have any problems being accepted for SSD with the MBC diagnosis. Snooky- I still don't know the amount I will be awarded or how they come up with that amount.
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Hi, I've heard that LTD companies help you apply for SSDI because it will save them money. I think LTD requires you to apply for SSDI in fact. They will deduct SSDI$ from what you receive from them. Maybe they're helpful and kind also! Easy is good.
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Update- Heard from Social Security by phone 2 days after call with employers' contracted company ( above post ). Social Security verified the info given from the contracted company and said they would get copies of medical records from MO office and make determination. Should hear a determination within 2 weeks. Social Security rep was positive and said there should be no issue with determination.
Snooky- The Social Security rep said they take the highest earned 5 years of the last 35 years worked to determine payment. I think that is what she said. Still confusing. But the "estimate" on the Social Security website is going to be the real amount I will receive.
I will post more when I hear determination.
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Candy Fantastic. So what I had heard was correct. Happy for you.
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Update from here- Accepted for Social Security Disability. 9 business days (14 days total) from start of process with Social Security Administration to acceptance. My first payment will be January 2020.
I DID NOT include all my medical issues---hypertension or autoimmune disorders. Just the MBC. And no problem getting accepted on that alone.
I have appt with MO next week for regular check in, and appt with PCP the following week for check in. Cannot wait to see reaction from them when I say "Yes, I was accepted for SSD". My PCP, especially, thought I would be denied---see previous post from June.
Thank you all for the encouragement. It was a process. First with FMLA. Then STD with employer. Then LTD with employer. But the actual process with the Social Security Administration was a breeze.
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Excellent, candy! Glad for you! How are you feeling about it? I’m so proud of you for going with your own instincts on this
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Glad to hear this Candy-one less thing to worry about!
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Thanks Divine and Chicagoan. I am glad I was awarded the SSD. Still kind of confusing about the LTD from employer. I am to talk with them next week--the rep was out of the office today. And still need to verify with accountant that we don't need to withhold any money from the SSD payment for taxes. ???? And, of course, I still need to find out about COBRA for health insurance. Definitely will not be wealthy on SSD AND having to cover health insurance costs until Medicare takes over in 2 years. And there are questions about Pension payments. Still a lot to hash out.
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Candy, Glad to hear that your SSDI application was quickly and smoothly approved - as it should've been. As I think I've mentioned here before, I went through these same processes with my employer re STD, LTD, COBRA and SSDI. Be aware that your SSDI payments are taxable income but depending on how much other income and deductions that you have, you may or may not actually owe taxes. Unless you know for sure that you won't owe, you might want to put something aside. Also, regarding COBRA, now that you have been determined to be disabled by the SSA, your employer must make COBRA available to you for an extra 11 months for a total of 29 but the caveat is that while they can charge you 102% of the premium cost during your first 18 months (cost plus an admin fee), they are allowed to charge you up to 150% of the cost during that extra period of eligibility! The good news is that you will become medicare eligible in two years so you shouldn't need more than 6 months of the extra 11 at the super high rate. Agreed - it's confusing!
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Hi all.
Just posting here today because of something that happened today. I attend church, I am a Christian. As you all know from reading my posts on this Thread, I have been very anxious about the SSD process. I know deep down that my Lord and Savior will give me my needs, but I am human also. I have fretted over stopping work (at a job I had for 26 years) and going thru the whole process of STD/LTD and then SSD. I feared that I was making a mistake and should stay in the workforce until I got much worse with the cancer. I feared that I would be denied SSD and then what would I do for income (I am single). So I thank the Lord for allowing me to qualify for SSD. So today in Sunday School Class I gave a praise item that I was accepted for SSD. I wanted to give God the credit for answered prayer. Well there is a lady in class that has been trying to get SSD for 4 years and been denied multiple times. Her situation is a mental illness and anxiety. After I said I had been accepted for SSD, she stormed out of the room. Everyone else looked embarrassed. I explained to the class that I received the SSD so quickly due to the Compassionate Allowance Program and that it is for terminal cases of cancer, not just a cancer diagnosis per se. Later the woman came back in and apologized. But later in the day, we were standing together and someone else came up to talk. This lady said to the one that came up " Candy, did you tell ____ the good news". I just mumbled " I was accepted for SSD" and moved on.
I just want so badly for things to be like they used to be. I want to be healthy. I want to be back at work. I don't want to think about being terminal. I don't want this.
I do think that, at least in my area of the world, SSD is a stigma -- not having to work and getting a government check to stay at home. That the system is "rigged" to accept some while others are denied. This woman deserves SSD. She is a good person and truly has some mental issues that makes it hard for her to work.
I am glad I took the steps and applied for SSD, but to anyone thinking of applying -- it is a stigma getting Disability. At least in the area where I live.
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Candy,
So sorry you had that experience today. None of us have chosen to have Stage 4 cancer-I am pretty sure all of us receiving SSD would prefer not to have cancer and to be able to work. I agree there is a stigma to receiving SSD, especially, if like many of us, we look fairly normal and like we are just fine. I have absolutely no guilt about receiving SSD because I have paid into the Social Security system since I was 13 and will likely have a shorter than normal life. Having cancer has really helped me not to care what other people think. Like you, I am grateful to God for allowing me to have this income to make my life a little easier as I deal with cancer.
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Candy. I am so sorry that something providing you with great relief has caused such grief. Try to not let the judgements of others affect how you feel. You deserve to recoup what you have put in, and with this disease no one knows how long you have.
Thinking of you.
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Ladies, I'm going to forward a post I did to another thread which basically tells why I had to quit working because of my treatment of MBC. I'm freaking out that I will be denied because I also have a diagnosis of anxiety and depression. SSD just sent me paperwork requiring me to fill out my work history, what skills I do/don't have, why my symptoms keep me from working, etc. Help. I know y'all can't help but I'm glad I'm not the only that has had problems with people looking down on you for applying. My oncologist thinks I should be working because my disease is stable. But I can't quit treatment. Hopefully I will be able to get the post I made on the other thread to show up here.
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