Is anyone else an atheist with BC besides me?
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Yay for normal!!! Congrats
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👍👍👍
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Miriandra, good luck for your first week back at work. All the arm use may actually be beneficial I am thinking, for your recovery.
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So true!0 -
I have no idea what to do. Here is the situation:
I have been working on a new branding concept for my business for the last 5-6 months. I'm talking 12-16 hour days for MONTHS to get this new business (online marketing membership club) off the ground. I was about 3 weeks away from launching when I was diagnosed stage iv.
I have insurance through the Marketplace, but as we all know, the fuckfaces in Washington (and Texas) are trying to do away with the ACA and pre-existing conditions. I figure I'm okay for 2020, but 2021 and beyond are a crapshoot, therefore, I need to get on Medicare stat. (I'm blissfully single, so no spousal insurance either)
I'm only 52, so I have to get on Medicare through SSDI. This takes about 29 months to do (24 months after your first check which comes after a 5 month waiting period.)
I'll be approved for SSDI because of my diagnosis, but I'm not allowed to make over $1200 a month. There are "gainful activity" restrictions as well, meaning the hours I can work are restricted. Also, I can't postpone it because I'm very close to the five year cutoff for eligibility with points or some such red tape bullshit.
I am totally demotivated now to launch my business. If I can't make a real go of it and make $5-10K a month, then I don't want to do it. I could conceivably keep it very small and only make $1200 after expenses, but I can't jeopardize my Medicare eligibility, and I think it would be more trouble than it's worth. Do I really want to go through the hassle of working for $1200 at the risk of losing Medicare/SSDI? Do I really want to spend my numbered days working on a half-ass business? Earning money isn't really the issue, it's the Medicare that's most important. And since I don't really know how these drugs are going to affect me, I don't know if I would even be able to work it full time.
On the other hand, if I don't work and try to do something, then what do I do? My compromised immune system and possible other side effects makes getting a two-day-a-week part time job iffy. I can't even imagine what I would be able to do. My background is in catering/restaurant and purchasing, so I know I can't do that anymore - physically or mentally. I thought about rebranding the rebrand (ugh) and going smaller, but that just holds no interest for me right now. The motivation was money, and now that is gone.
As far as volunteering goes, the only thing I can think of is working at the DNC or on a campaign stuffing envelopes or doing paperwork (no phones or canvassing). There were some opportunities at hospice facilities, but uh...no thanks, I'll pass.
It feels as though I've been thrown into an unwanted, overnight retirement, and I just don't know what to do with myself. I've had baseball these last three weeks, but as of October 30th or so, it's over too, then I'll REALLY have nothing to do. I'm afraid if I don't have a passion or something to do, I'll just let myself fade away and not fight this thing. I don't drive on highways (anxiety) so my options are somewhat limited. I'd love to spend my days at the zoo, but it's 45 minutes away by highway which doesn't work for me.
After my cardiologist appointment, I'll be able to exercise and make health my priority, but what do I do for the other 23 hours a day?
Sorry for the stream of consciousness post, but I had to get it all out in writing. I honestly don't know I'm going to do. I feel like I should wait until after my first set of scans in January to decide anything, but in the meantime, all I can do is obsess about it.
Thanks for listening, and if you have any thoughts I'd love to hear them.
Lauren
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LaurenInPHX I just read your post---what a lot of stuff you have churning around in your brain right now.
I feel very at home on this thread, so I check in sometimes.
The first thought that comes to my mind is that with so many possibilities and decisions, maybe you can narrow it down a little bit? Sometimes, making ONE decision that's the clearest one, helps us figure out the next step, like a flow chart.
Give yourself time to absorb your health news, learn more about options and treatments ahead, and sink into a decision-making timeline that really feels comfortable.
If the most important thing is Medicare qualification, or if it's having your own business and fulfilling that dream, or if it's peace of mind, or if it's staying challenged...maybe you can decide what that first step should be, and go from there?
It occurs to me that all of this decision-making makes you face a certain amount of loss. There will be trade-offs as you choose one course of action and not another one, each time. With new health realities, we lose some of our (perceived) choices. So, give yourself some space and accommodation and self-care. With loss comes some grief.
The other thing that comes to mind is that your Stage IV diagnosis is such a huge thing, a new presence in your life, that it will need its own support. On this community forum, there are Stage IV threads, where people discuss these big decisions, as they face a more uncertain future. You might find a discussion on one of those threads about how to make decisions after this diagnosis.
You sound super thoughtful. You've analyzed what it takes to do each thing, whether the catering ---too physical---or the Medicare---not earn too much--- or the business---decide if the time investment is how you want to spend your energy. I notice that you're also thinking carefully about how you can stay fulfilled and gratified in life. This all sounds to me as though you're someone who will think this through, one thing at a time, and you'll get through these decisions. Trust your own inner wisdom, might be what I'm saying.
I have noticed --on this forum, and in my own life experience---that LOTS of women live a LONG time with Stage IV. Years and years and years. There are great treatments, and you might have a lot more time left to develop your business, who knows!
Rather than expecting yourself to decide everything perfectly, remember that we can only make the best decision at the time, with information we have at that time. I send you positive vibes and wishes for good solutions to these complicated decisions.
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Oh wow, Hiking Lady, thank you for such a thoughtful and wonderful post. Yes, I am very much an overthinker and have all kinds of thoughts running through my brain at the same time. It’s annoying. ;
Qualifying for Medicare is my number one priority. Unfortunately, with the information I have now at least, my choices are limited as to what I can do. It has been suggested that I find a lawyer and figure out a way, so I’ll probably start there.
One of my favorite sayings is “Decisions are discovered, not made” so that is what I am doing - trying to run into my decision by exploring all options. I think I will post in Stage IV - you are the third to recommend it so majority rules.
Thank you again for your generous and thoughtful reply. I’m sure I will reread it often as I search for the answers.
Lauren
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Lauren - I'd get myself on the list for SSDI first thing since it takes 24+ months. If you need to talk to a lawyer to make it all happen, hope you have the funds to do that & can find one who's knowledgeable.
In the mean time, you have nothing to loose by continuing to work on your new company. Maybe just throttle back the hours to half a day? Maybe that will mesh with new treatments? I wouldn't totally give it up at this point. Maybe you can make a huge success of it if you feel well enough and sell the company in a couple of years when you have to ditch the income to keep SSDI. Or maybe the success will be so great you can refuse SSDI in 24 months.
As for free time - now that I've been retired 5 or 6 years, I can't imaging how I ever had the time to work. Truly there are lots of things to explore.
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Thank you, Minus for your input. I’ve had a crazy making kind of day.
I hate to flush all that hard work down the crapper, but I need the Medicare and don’t want to jeopardize it by making money.
I feel like I’ll know more after the election. If dipfuck gets elected again, then I (hopefully) stay on SSDI and get Medicare in 2022. If a real human being gets elected instead of warmed over sewage, then I can open my business as planned because I won’t be worried about insurance.
Of course, this is all dependent on how I respond to treatment. I’ve only been on it a week. I might not be able to get out of bed next week or next month.
I do think I may have solved the “what the hell will I do with myself” issue though. About 10 years ago I started to write a book and finally just gave up on it because I wasn’t getting anywhere. I even shredded everything I had when I moved because I never thought I’d go back to it. Fortunately I still have some computer work left so I might try that. If I can get it done, I can take donations for it instead of selling it for income (assuming it’s any good of course)
And like you said there is a lot to explore. So maybe this isn’t so bad after all.
We shall see.
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Laurel - there are of course people on both sides of every political issue. We try really hard not to discuss politics or call names on the BCO threads. Yes I know, it's difficult not to comment. There is a thread for people heavily committed to either side, but I understand they are sort of 'sub rosa' so I don't know how to point you in that direction.
Personally, I wouldn't wait for the election to start working on SSDI. I'd start the ball rolling. You can always drop it if you change your mind.
I think the idea of writing a book is great. Right now the hardest thing you have to do is chill. How about Yoga? I've found a great free chair yoga class at one of the hospitals.
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Lauren, Here is a link to the liberal political thread. There is also a conservative thread but it became so extreme that they decided to move to another cancer forum. The moderators are fine with our thread, just so you know. https://community.breastcancer.org/forum/84/topics...
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ThanksMinus.
My situation is so tied to current politics that it's hard not to mention it, and hard not to be angry about it when I do, so hard to know where to post. I think I'm done posting about it now, so I can keep bc and politics separate.
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LaurenInPHX, I read your longer post this morning and thought about it today to see if I had any ideas, must admit don't have much knowledge of the situation re medicare there, as I am from Australia.
You seem such a high spirited person I cannot imagine you ever fading away without a fight!
Just read your new post about writing a book, that sounds like a great idea, I'm sure you have it in you to write a good one!0 -
Lauren, I went to a program on SSD and the lawyer presenting said there's a compassionate clause (or something like that) for several illnesses, including breast cancer with distant mets. It's an automatic approval with a much shorter time before you get benefits. So in your shoes (and I've thought a lot about this for myself), I'd apply right away. You don't have to prove the usual things like an inability to hold any job, just have documented from your doctor that you have mets. As for the decisions about whether to move forward with your business plans, I can't say. I personally, would just retire, or maybe work very part-time. Also, the political situation is directly tied in to the health care/insurance crisis so I don't have an issue with you commenting on that.
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Ananda, thanks for the link - it's always good to find the like-minded people!
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Pooh - that you gave it any thought at all is something I am grateful for. If I can get the book out of my brain and on the page will be the best bucket list achievement ever. I think I might be getting excited about it.
Wander - I applied for SSDI on the 15th so should be hearing back by the 30th. I already have a caseworker and she said the same. I still have to wait those 29 months for Medicare coverage however, so we’ll see what the ACA/preexisting conditions situation is like then. I think super part time (like gig work if I can get it) plus writing plus traveling I s the way to go to keep me busy and out of trouble until then. :
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I don't think ACA has anything to do with Medicare; it has it's own set of regulations. You may want to ask your case worker if you can get a supplemental plan with your Medicare so all costs are covered.
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Ananda, Thanks for posting that link. I had lost it somehow and am happy to have it back in my favorites.
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Ananda-
I have ACA coverage now, but they are trying hard to get rid of it. There is a case in the Texas courts right now that could dismantle it. I don’t think anything will happen to it in 2020, but if Rs are re-elected they will try again to shut it down, in which case I will have no insurance, hence the need to get Medicare ASAP. The only way I can get it before age 65 is to get on SSDI for 29 months to be eligible. If Ds are elected, I’m still not in the clear, but much better off. So no I dontthink they’ll do anything to Medicare (although they are trying that too) it’s just a safer bet.
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I think you're right, Lauren - you need on Medicare as soon as possible. And while we're at it, we need Medicare for ALL.
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We need something for all, that is for sure. I'm not as educated on the subject as I should be considering my life depends on it, but people much smarter than me have it somewhat figured out, so I'm going with it,
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So much yes.
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LaurenInPHX, I'm very sorry that you're forced to face this daunting challlenge. Obviously a far lesser impact, but I paid out-of-state tuition earning my graduate degree because health insurance was so expensive in the new state and I was reluctant to rely on student health insurance. I was lucky that the situation was temporary (two years), but it's terrible that access to health care drives so many important life decisions. I'm sure the folks on the Stage IV forums will gladly share their knowledge. I do know from a family member's battle that an attorney will take a significant chunk of your disability income. If the Stage IV diagnosis makes approval highly likely, it would be a shame to lose that income without some assurance that the attorney can do something to expedite the process or dramatically improve your chances of getting approved.
Once you know better how your treatment will affect you, might your skill set lend itself to teaching in the continuing education department of a community college? They typically give more credence to industry experience vs. the emphasis on academic credentials in teaching traditional college classes. The classes are often short-term (say, three hours twice a week for three weeks) vs. for an entire semester and staying under the $1,200 income limit could be easily done. Also, if you own your home and are approved for disability, be sure to look into whether you can get a break in your property taxes.
Lyn
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Ananda - ha! A big amen to that!
Lauren, I've been thinking a lot about your situation today and remembering the old slogan "the personal is political." I just don't think it's possible to sit back and look at the current situation and agree that it's just a matter of different opinions. People are going without adequate healthcare and the current Administration is doing everything in its slimy-hearted power to conserve money for the rich by screwing over the rest of us. I don't care if this isn't a palatable idea - it should cause outrage.
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Agreed 100%, wander. 100%.
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I had to post this. The Devil made me.
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