Disability or still working?

[CatLady2022]

I’m curious to know if anyone is receiving disability but has a small side job to supplement. I don’t know how disability works but I know I will not receive much due to a low paying online job that I’ve worked for over 20 years. I had to quit as sitting in a computer chair and typing all day is no longer an option for me. Just curious to see if anyone had experience and if you’re still working, that is just awesome but I know there have to be a few women like me who can no longer work due to mobility issues and or stomach issues. Don’t know if this question is allowed and if not, please delete.

[Kruza]

Hello CatLady2022; I am still working through my fatigue, aches and pains etc. so although I can't relate to your question, you do what you have to do. I am looking for a way out.

[Silver126]

I’m still working full time. My request for disability condition had been accepted and I’m granted three days every month for scans, therapies, etc. I also have free access to public transport and moreover I can stay at home after therapies. The number of days is decided by the doctor of the NHS, whose service is totally free for Italian citizens. Money for disability is only given to those with low income, even if they work. And therapies too are all paid by Italian NHS in hospitals.

It’s a very good system and if I won’t be able to work someday I know I’ll receive a good help. But for now I’m happy I can still work!

[kokopelli2017]

hi CatLady.

from your post, I don't think you are on disability yet. applying for disability is easy enough to do on-line at the social security website ssa.gov. mbc is automatically considered a disability and Social Security will approve you probably within 4 to 6 weeks. although if you are 65 or older,, you would be applying for social security? at age 65ish...disability becomes your social security.

anyways, you did not ask about the above. you asked about working. if one is on disability(or social security), in the year 2023.....you are 'allowed' to earn $1,470 per month...without affecting your monthly payment. they call it the SGA...Substantial Gains Activity.

good luck with all...

carole XO

[CatLady2022 in reply to kokopelli2017]

great explanation Thanks so much for the reply. I am proficient at crochet and am considering doing farmers markets to sell the stuff I make but I was scared to lose the option of disability if I were to actually work. I can no longer sit straight up in chair to work at computer but I definitely have comfortable outdoor recliners that I could use to sit at farmers markets and I can sit in recliner to crochet at home (with heating pad attached) so as I was sitting here making my one-millionth crochet hat, a lightbulb went off but I am in process of getting accepted to disability so was wondering how All of the worked.

[kokopelli2017 in reply to CatLady2022]

happy to be of help. farmer's market sounds fun and nice way to make some add'l money. not to mention you get to show off your work. great idea.

and great to hear you already applied for disability👍. XO

[wendle3007]

Hello. I'm in the UK so disability payments are Means Tested and my partner and I have savings which take us over the limit so cannot claim any benefits. I could apply for personal assistance, like having a cleaner or costs towards a car etc.

I am still working but have reduced my hours to what I can manage and still have a liveable income. I believe that working is part of my well being. It's "normal" to how my life was before cancer; gives me a routine; keeps me physically and mentally active; spending time with colleagues has a positive social aspect - I can go whole days without thinking about my condition or my treatment.

I wish you well in your pursuit of benefits!

[Mumberly in reply to wendle3007]

wendle3007, you have described, perfectly, the way I feel about returning to work. I just didn’t know how to describe it.

I’ve been off since my diagnosis in July 2021, receiving full pay through my work benefits and my family thinks I’m crazy to want to return to work.

My benefits run out in July and I would have to switch to social services at a much lower income. I don’t know if we’re allowed to supplement that income without getting a reduced benefit (Ontario, Canada). But that’s only part of the reason for wanting to return. For me, it’s all the things that you’ve described.

I’m nervous about returning because right now, I feel physically ok but I also don’t have anything competing with my time. I’m requesting a combination of on-site for 2 days a week and then dividing up the remaining 3 days in Flex Time from home. 🤞🏻.

If that doesn’t work out, I’ll be investigating the same question that CatLady is asking.

Kim

[wendle3007 in reply to Mumberly]

I stayed off work throughout my chemo and surgery. Two weeks after surgery I started a phased return to work, going in alternate days and started with 4 hours on each of those days and gradually built up the hours until I could manage a full day, but still having the alternate days off. This took me up to December 2021 and I realised I was never going to go back to 5 days a week so I put in a request to do 3 consecutive days but longer hours, initially working from home on one of them. I did this until June 2022 and then started going in on all three days because my job means I really need to be on site during the summer. After the summer ended I didn't return to working from home but have realised that the 3 long days are too tiring so since January 2023 I'm working 3 consecutive days but "standard" hours and it's made a big difference.

I should also point out that I chose the days I work to fit around my regular 4-weekly treatment so I'm not taking additional time off and when any non-routine medical appointments are on a working day, I work from home on that day and just take the time out to go to the hospital and this is accepted by management.

I hope you find a work/health balance that suits you x

[CatLady2022 in reply to wendle3007]

I worked through treatments with my first diagnosis with four chemo and 33 radiations but because MBC has caused me extreme hip/back/leg pains and very serious stomach issues, I can no longer meet my deadlines. I was also already considering retiring as I have the beginning of carpal tunnel so when finding out I was metastatic, I decided to quit. I’ve worked since I was 17 so it’s been an adjustment for sure.

[Verbena1]

Hi,

I’ve been at the same job for 10 years and was full time but am now on SSDI disability and had to cut my hours substantially.

Honestly I wouldn’t be able to work much more than I do, due to the ridiculous side effects and exhaustion, but I do work from home so that helps. I also agree, SSDI alone doesn’t pay for all of my bills and rent is very expensive here, so I do what I can and utilize every resource available.

There are also programs in many places that allow you to opt in to discounted heat / electric, internet / cable etc so be sure to look into those!

Hope all goes well for you.

[Andersl]

Disability allowance is not means tested. I don't work but I'm sure many who are receiving disability allowance are thinking of, or doing a job such as yours to help pay the bills/keep themselves warm.

[wendle3007 in reply to Andersl]

You're correct about disability allowance but I would not be eligible. If I decided I couldn't work due to my condition it would be Universal Credit which is means tested. I simplified my first post to explain why I was choosing to work.

[Smokeyd]

I have been off work since last year (when I was diagnosed with MBC) due to mobility issues. At first I was paid only by my work insurance company. Later, after approval, was paid by CPP (Canada Pension Plan Disability) and balance by insurance company. One is allowed to work to subsidize, but it is a small amount.

Good luck, hope you can work the finances out. It's so hard physically what we have to go through and then have to add the financial worries too! :o(

[PJBinMI]

I'm a long timer with MBC (since March, 2004, almost 19 years!) and made the decision to stop working and apply for Social Security Disability Income (SSD, SSDI, same thing in US) 8 months in to this crazy journey with MBC. I went to a weekend retreat sponsored by the cancer center where I get treatment, and several of the other women there told me how easy it is to apply and start receiving SSD. I called the closest SS office and was given an appt for the next day at 8 or 8:30 am, when they open. I got there early and listened to the other folks gathered near the door waiting to get in. They had all been waiting weeks for their appt! One of the very few good things about MBC is that it does qualify us for SSD and any other disability programs available. We just need our oncs to fill out one of their forms, listing metastatic breast cancer as the diagnosis and signing it. There is also a program called Supplemental Security that is income based. And the states vary in their requirements for other programs, like Medicaid, food stamps and whatever your state provides. (My brother left his job to take care of our father after he had a stroke, and now in his state, he qualifies for public assistance income and food stamps and Medicaid in addition to his pension and regular age based SS) Carol, above, lists the income limit on working while on SSD, and that's good to know. Another thing you can do is take a really hard look at your spending and what you could cut back on. I'm fortunate to be married to a man to a man who is a great husband whose ideas about budgeting are similar to mine and between us, our income is enough for all the necessities and alot of our "wants", like dog and cat food and vet bills, lol. I've never regretted stopping working and going on SSD! I was too tired, stressed, etc and this diagnosis really changed my outlook on my life! If my husband dies before I do, if I am still mobile enough to live on my own, I'll sell our house (on 10 acres, mostly wooded, very beautiful and rural) and either buy a condo near by daughter or move into an apartment in a "senior facility" that has a wide range of options, including meals, housekeeping and even skilled nursing care. I've visited friends who live in a place like that and love it! There are activities, garden plots, transportation to medical appts, and the people who live there have great friendships! What appeals most to me about that is that it would allow me to be as independent as I can be, probably for the rest of my life! Getting this diagnosis sure changes our lives! My sense of humor helps me alot! I joke that I wish I could have my head transplanted onto a younger healthy body! Even the body of an animal....thinking about those possibilities gives me alot of laughs! It could be alot of fun to have wings to fly! I hope you can do what ever will feel right, now and next year and beyond that!

[Bettybuckets in reply to PJBinMI]

so full of useful info and inspirational for a life well lived and all that anticipation about can still be in the future even if the worst wet ti happen and your hubby dies first. Really something we should all consider as we treatment help us live longer. Thank you so much for taking the time to write all this and be so positive!

[kokopelli2017 in reply to PJBinMI]

omg PJB. that is too funny😂. I thought I was the only nutcase (no offense...lol) who pictures my head transplanted onto animal...it makes me giggle. my mobility so poor now and such a great solution....haha! I'm leaning towards a deer or horse....I picture hoofs...lol. thanks for the laugh! best of wishes. carole💛

[fancydog]

Hi Catlady! Love that name. I was already on Social Security Disability for another condition before being diagnosed with MBC. But straight to your question, I have a small Ebay business on the side and while the recent economic downturn in the US, things are a bit harder to sell but it can be something I do when I feel up to it and not do when times are tougher in this journey. Its not any big $, but a little here and there does help our household and helps me feel like I'm contributing to the household and the cost of taking care of me, and I am selling items I already had. There's no monthly salary you can count on and Dec was by far when most items were sold. If you want to know more feel free to message me.

[CatLady2022 in reply to fancydog]

that’s exactly my plan. Home based crafting business with the possibility of selling online and/or at farmers markets. We shall see how it all goes but it’s just a thought in my mind currently. I hope to implement that plan soon.

[Bettybuckets in reply to CatLady2022]

great idea! Keep those hands busy while visiting with friends or even watching Netflix. ❤️

[fancydog]

If you have that talent definitely give it a whirl, I'm in NC and I know many people successfully sell their crafts, especially good if people can give you orders for what they would like and make a down payment. Front door wreaths for every season is popular. I know another that repurposes stuff we have in NC like tobacco sticks and she made Christmas Trees out of them, she sold about a dozen for $30 each(it was on Pinterest).I have one very artististic friend who shears sheep and spins her own yarn, and dyes it then makes needle felted items, she regularly offers her wares at Street Markets and has a site on social media. Social media can be a great help to you!! Let people know this is how you are trying to pay the bills while living with a Terminal diagnosis and the best people will want your wares to show support to you and word of mouth remains a great business asset!

[kearnan]

You cannot be working when applying for SSDI bc if you are applying for SSDI, you are stating that you cannot work bc you are disabled so you will be automatically denied if you are still working and paying taxes (on the books). If you are making that low an amount, (I am just assuming for an example) I would imagine you would be on medicaid already. But if you are working, when applying, you will be denied.

Think about it. You cannot state you cannot work and then be working when applying. That is the financial part that is hard to deal with. Even with knowing you will be approved automatically, it will be SIX MONTHS before you see a payment. The sixth month is actually payment for the fifth month. It is called a waiting period.

Like with unemployment, when you apply, you do not get paid for the first week, bc it is a waiting period but with SSDI, although you will know you are approved within like two weeks, you still have the five months (really six bc you do not get the money for the fifth month until the sixth month.)

[CatLady2022 in reply to kearnan]

Sad part is the disability I will receive per year is less than what my deductible is per year but it is what what it is. I will deal with it! Thanks for all the replies! I really appreciate your input.

[kokopelli2017 in reply to CatLady2022]

hi again. Kearnan is technically correct. you can't be working WHILE you are in the midst of applying for disability. but once you are approved...which only took me three weeks....you can then work after that as long as you don't make more than $1,470 per month. from what you said, when I gave you my input, I was under the impression that you are not working at the moment...and I still think that is correct? you mentioned that you had already applied for disability SDDI and were waiting for approval. did I get that right? if so, then once you get approved, wait the 6 month waiting period until you get your first payment. and then after that....you can start making money with your crafting. you can always call social security, after you are approved, and verify this amount of $1,470. social security encourages you to work up to $1,470/month so there will be no penalty. like I already suggested, call them after approval and get the details.

(btw...I did not understand what you meant by the 'deductible'. but any $$'s that you receive from Disability/SDDI is better than nothing)

good luck with all...

carole💛

[CatLady2022 in reply to kokopelli2017]

sorry for the misunderstanding. I was recently approved and received my first back payment. I am no longer working since I quit the same day I was diagnosed. I don’t adjust well to meds because I hate taking them and I just knew from my last diagnosis in 2014 and worked throughout that process that my body would take a few months to adjust to the meds and I refused to work through that adjustment period again. I kept my job in 2014 with only thursday through sundays off (I worked 24/7 as a medical transcriptionist on call for emergencies and regular hours) and since I was already considering retirement due to carpal tunnel pain, my hubs told me to quit so I did. I didn’t apply for disability immediately because I still had money saved from my full time 20+ year career but when I knew my insurance deductible would be due again beginning January 1st and with cts costing almost $1000 every three months, I needed the assistance with disability. Hubs pays the bills but I supplemented the income for extra curricular activities and also my medical deductible. I can no longer sit in a computer chair for long periods and because my job was hectic, typing non-stop all day with only a half hour lunch, well working just wasn’t going to happen this time around. I’m older, more tired, and have more medical issues than I did in 2014. I was relatively healthy that first round in 2014 but chemo, a hysterectomy, and radiation did a number on me. I’m glad I quit tho since the new meds (verzenio) causes me to basically live on my toilet most of the day. I think what took so long for my disability to be approved was a statement by oncologist which she continued to carry over from before my bone biopsy confirming stage iv. She says on all followup paperwork and I quote “ likely stage iv and incurable but treatable metastatic breast cancer’ ummm likely??? Well it took almost 4 months for me to get approval so I really thought I’d be denied, I’m sure it was some kind of holdup with my oncologist paperwork but I finally received notice I was approved and payment sent to my bank. However my medical insurance deductible will take 10 months of my disability payments so the hope that disability would at least pay for a housekeeper for us went out the window unless I can supplement with other income somehow. I need a housekeeper. If you are told you shouldn’t bend or push or lift, it’s kind of hard to keep a house clean. I’m sure you all can relate. Anyway thanks to Carole above who let me know it was called SGA so that when I do contact SSA at least I know what to ask. Thank you guys for replying. Even tho I didn’t respond to each and every one of you, I did read them all and every response helped in some way.

What tho is ‘means tested’ I’m in the US and have never heard that term before in medicine.

[kokopelli2017 in reply to CatLady2022]

'likely' stage iv.....she seriously needs to update her paperwork to reflect confirmed stage iv. thank goodness that you were indeed approved for Disability SDDI despite her shoddy records. very happy to hear you are now officially approved👍.

best wishes.....carole💛