My Husband, My Life, My Love, My Family, My Cancer
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Candy-Who said you have to send the letter to SSA? I wouldn't think that you have to do that. It's your private information to do with what you will. SSA may review you. I never was but they said they were going to review me after 5 years. I was so close to full retirement that I think they didn't bother. Sorry this is happening.
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Oh Mara - I’m so sorry you have to deal with this 💩. It’s just so wrong. No one needs more stress given our diagnosis. I agree about looking for a legal aid clinic. Also contacting a social worker at your cancer center to help you walk through this. You will be in my prayers🙏🏻🙏🏻🙏🏻.
Sending positive vibes for those needing them. We’ve all been gut wrenched by the recent losses of emac and spookiesmom. May peace come to all of us.
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Candy, I also agree with Chicagoan, why would you need to send it to Social Security? Unless your benefits from SSDI were reduced because of how much you were getting from LTD?
And I absolutely think appealing their decision makes sense. I hate that you're having to deal with this at all.
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I did not necessarily want to reveal to Social Security this determination, but it says in our paperwork from Social Security that if you have a change in income, etc, etc you are to notify them immediately. It will be a lesser income with not having long-term disability anymore, but it is a change. And I thought it would be better to fess up now, rather than get "caught" not informing them and then they have me on frauding the Federal Government. So I called Social Security and she said to bring a copy of the letter to my local Social Security office. She took my name, social security number, etc so now I am on record (if they record phone calls).
I hate losing the long-term disability benefits, as every bit of income helps. But the bigger issue is the SSD. If I lose that I would have to go back to working full time, as that is my only source of income. That is my worry now. If the determination from the LTD company will sway SSD that I am no longer disabled.
I am not going to fight the LTD, but if it comes to SSD I may look into free legal aid, if there is free. I cannot give a portion of my SSD to a lawyer. I live on that income. My car needs a new transmission— that is more important than hiring a lawyer, as that is my only mode of transportation.
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Candy, still sending support your way anyway.
Goldens, I am confused, did I post something indicating a serious illness? If you mean the head bleed, that is fairly stable, we MRI every 3 months. So long as it does not change, we keep watching it, not aware of any symptoms. If there is something else I said, please let me know. I love that you are supporting me but I honestly am not dealing with anything serious.
Goldens, I am wondering if you meant Candy dealing with her situation which is a pile of poop.
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Candy,
I don't think that SSD will necessarily pry into your loss of private LTD. SSD has its own criteria for determining who qualifies for benefits and that's all that counts. My sons (autism and intellectual disabilities) faced two separate criteria when applying for state benefits and federal benefits. They ended up getting both, but it was quite a process.
Most law schools maintain free clinics to give law students the opportunity to gain some experience before they enter the job market (they are supervised by their professors). If you live near a law school, that is a possibility.
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Candy, may I suggest you call AARP for help. Some of the programs they offer are free or on a sliding scale of income. This is nuts what they are doing to you.
Hi all. Hate to complain about MO again, but here it goes. Monday I visited with him over telemed. Again, he is temp. MO until FLorida cancer specialists hires someone. We had that miscommunication, which had me upset as he frowned on my take of the situation, as If I was in the wrong. Ah, maybe I was. But we moved on to getting the 75 mg Ibrance rx sent in and he said I'd see it in 2 business days. Welllll, I asked point blank if I needed to do anything regarding the order and he stated no. So I still don't have Ibrance, it's been 3 weeks I'm off. Now two things I need to mention. 1. My neuro depends on Ibrance to act on MS and keep me stable. Being off this long, I'm miserable and struggling. 2. I called Pfizer on Friday to ask when the drug will come. Support said no one ordered it! What??? She said they rec'd the next rx lowering the dose to 75 mg, but no order was placed. SO I placed the order, and wait…Probably Tuesday delivery. I am very disturbed about this whole thing.
In pockets for all and all your needs. Prayers for Puffin on another thread.
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Irish, I am sorry the MO did not get the drug reduction order in for you. Seems that some MO's just forget to get stuff done which is a PIA. In your pocket you get your reduction ordered finally and a better MO should you wish that.
Not much happening here. Ordered some cat food from Amazon, TV playing for ads and about to watch House of the Dragon on another device. Washing my hair and getting laundry and the vacuuming done, probably using the robot vacuum along with sock mops after order arrives, need a mop of the floor too. Creating more storage with 3M velcro hooks on the wall, started in kitchen and will add to the bedroom. I also use my laptop with a fan cooler underneath on my lap since there is no space for a desk but the little tabs broke so used the velcro 3M tabs and attached both to each other, working so far.
I did purchase fiber one cereal for the boost in fiber and got some white milk. Added some peanut butter powder for another protein boost in addition to the milk. Will need to add stuff to the meal. I am also thinking of my soft taco dinner bake, I get four tortillas with it so my thought is to use two at a time instead of the whole box or even one and turn black beans into the ground beef component, use the taco seasoning that comes with the box and stretch the cheese sauce with mayo, it should be good. I forgot to get the old el paso spanish rice so will make my own with my white rice. Snack wise, got a massive shipment of Pringles, they had a multibuy going on and I always to the subscribe and save so those will arrive tomorrow, cheddar and sour cream and onion. Will hang them up somewhere too. Might get some prettier bags and use those to hold light things as well.
I did chop up cheese slices and black beans, rice is underway first then spray bigger frypan and add whatever seasonings I decide to add, likely taco seasoning, salt and will take the cheese sauce and combine with mayo so it can stretch two meals. I did chop up beans, sliced cheeese and croutons, already in a burger texture. Added the mayo and cheese mixture. Not using the tortillas, saving for cereal meals as a quasi toast. Used larger frypan and heated through on low and will add salt and sour cream to the top, should be quite filling and good.
Today is looking cloudy, hoping that it clears for fireworks. Weather is still better, cooler at least and got my paratransit for Wed this week, got Herceptin. Anyway, I still hope everyone has a good day and I am in anyone's pocket who needs me.
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Anyone else having trouble getting into this thread this morning? I tried several times and ended up going to an earlier notification. Now I’m in. Weird
I had a friend who was an immigration attorney. I don’t know which agency she worked for but her clients paid nothing. You would think there would be something similar for disability.
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Well, the meal was very good and too filling, maybe finished half. Only 1/3 cup beans, 1/3 cup rice as well. Chopped beans and a clice of cheese with some crouton s, added premade rice into frypan, added a bit of the cheese sauce that came in the package but mixed with bit of mayo so there would be some left. Have not opened the torillas yet, saving one for dinner when I heat up the leftovers from this morning. It was really supergood. For anyone saying they cannot afford food, they should come shopping with me and do meal planning as well. Food is easily stretched and still nutritious as well, nothing wrong with some canned or frozen veggies either if the fresh is expensive. Save money for seasoning as well, that can really change meals. Will have cereal around 3pm and eat the leftovers tonight. Verygood meal.
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Me yapping again which is OK, can scroll by if need be. Just feeling happy as one of the legs of my laptop cooler broke and I realized that I could use the 3m strips with velcro. Laptop attached to the cooler and then attached my tablet to the lid of the laptop, easier to watch TV that way. I am enjoying that very much.
Sunshine, I had some trouble getting in over the past couple days but it was fine today.
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So sorry Mara! I meant that to be for Candy. I always reread my posts for grammar and spelling - obviously I missed the most important part 🙄🤣😳🤬
Geez Louise Irish - that’s some darn awful miscommunication. Someone sure dropped the ball on the other end! Hope your Ibrance arrives quickly.
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Don't be sorry. I easily mix up who I am responding to as well, nice and active thread so easily done.
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Happy Canada Day to Mara and our other Canadian friends!
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Thank you Chicagoan!
Quiet day for me, just boosting budget on the TV with the ads, laptop pushes ads as well, gives a little bit extra. Also doing a full set of chores as well once the laundry and dishes are done, left them soaking last night. House of the Dragon was on again so I will watch it of course. My floor needs doing as well so will put on some sock mops to assist in pick up the dust and an actual mop as well. The robot vac will be busted out as well but I need to take the drying rack and another bag holding all my sewing supplies. I also got some pretty bags coming today,, will use those to hang up stuff like pantry food or other stuff and get it off the floor. I have the 3M velcro hangers and those are good for holding stuff up.
Not sure what to have, probably beans and an egg or two, save the cheese from the old el paso and use the tortilla to bake some sort of spanish pizza, I will decide later. I am also enjoying the bowl of cereal for lunch as well, liking the addition of white milk. The cereal can also boost my fiber in meals. Good crunch. Just have to get it all eaten. Still have meat pies as well.
Happy Canada Day to my fellow Canucks, hope it is a good day for everyone and will be in pockets as needed including mine as I found myself telling people Happy Victoria Day until someone kindly corrected me.
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I got one of those notifications, "on this day", from my cloud photo account - it was a picture of me the night before my mastectomy, the last time I had two breasts, and the last time I could say I wasn't receiving cancer treatment. Four years ago. The hope that it was "only" stage 2, and then the realization that it was actually stage 4. Oof. I look at that photo and boy, I had no idea what was about to happen.
I need to turn those notifications off, I think.
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I've had pictures come up like that, for me it was pre cancer. I had long hair, usually coloured it an auburn colour and I was slimmer BUT also pre chemopause. I don't miss my hair now but yeah, brings back memories. When I moved here, I had no desire to remember the past so I tossed out all yearbooks and don't look at most photos now. I am happy with wigs and no longer worried about my cancer or brain. I have MRI every 3 months as well. I feel better not remembering what I used to look like.
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Just an update from here.
I fretted all weekend about this "disability" thing. I had called the 800 number for Social Security on Friday and the woman said I needed to bring the LTD letter up to my local office this week. This morning I called the local office to ask if I needed an appointment or could just drop off the letter. I proceeded to ask this person if I was losing income, not gaining, did I need to report that. She said no. Then I asked if the income was due to LTD, and my LTD was stopping, is the SSD somehow linked to that. She said no. She said they have their own set of qualifications and it is not tied to an LTD company. So I am going with this. I took her name for my records. I told her I just wanted to do what is right and I didn't want to get into trouble. I then asked her when I am set to have another review of SSD. She could not tell from the computer.
Nothing like having the sword hanging over one's head on when the review will come, and will they think I can work with stable cancer. I have thought on it all weekend. I could not work a 40-hour workweek. I just do not have the stamina anymore, with the ongoing fatigue from the treatment. I am pretty good in the mornings and dwindle fast in the afternoons. And keeping a schedule of work plus taking care of homelife sounds daunting.
Edited to add: I am not going to fight the LTD determination. I am not up for a fight; I don't have the energy. I live off the SSD. That one was most important. I would have to fight for that, if it came down to that.
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Candy, I'm not sure you want to stir the pot, but I wonder if your reduction in income would qualify you for SSI. I have absolutely no idea what the qualifications are, but I'm sure you could check that on the SSA page
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Candy,
I am relieved to hear that your SSDI is safe for now. Hope you feel more peace of mind. I guess that I am a fighter. When I was told I would be taken off my LTD I was so angry, as I mentioned it was two days after my mother had died when I got the call, that I decided to fight. All I did is object vehemently in a letter and a phone call to my employer (not the Disability Consulting Company). After my strenuous objections, the LTD consulting company had an actual physician look at my records and indeed, agreed that I was still disabled. The person who said I was "ready to work" after one year of treatment was not a doctor. She was going off the doctor's notes and not my scans. Just wanted to share this in case you reflect and decide to fight. After I did this, I was never bothered again. I was officially "retired" at age 65 from my employer and of course, disability income and benefits ended at that point. I think the person who initially denied continuing my benefits got in trouble. She wrote an apologetic letter and said that of course I should be spending these last days of my life with family and not working. She went from acting like I was fit as a fiddle to acting like I had one foot in the grave. I guess I am somewhere in between those two states.
On a brighter note, with my new "career" of working in arenas, I was invited to work the Rolling Stones concerts this week. The first night I only saw a few minutes of the concert since I was stationed outside the arena at a gate. But last night I was stationed inside and saw the entire concert. I had to work my butt off and am wiped out today but it was worth it! Mick Jagger is still hot. You should have seen him strut around the stage.
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SeeQ- I do not qualify for SSI.
Chicagoan- They apparently did have doctors review my case. They have a doctor on staff with the LTD company and they consulted a doctor to "break the tie"- them voting against me and my doctor was for me.
Like I said, their letter to me was very convincing and very detailed. They had their ducks in a row. I would be fighting an uphill battle. For example, on the fatigue/brain fog issue they noted that I had no medical evidence of cognitive impairments ie Mini-Mental Status Exam and that my doctor stated in his notes that my mentation is good. We all know what the fatigue feels like. I am still able to converse, read, talk, etc. I do not have dementia. But the fatigue episodes are rough and would be hard to concentrate doing a job for 8 hours and meeting deadlines. They won this battle, albeit they fought dirty.
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Candy-Sorry they are being such jerks. If three doctors have already reviewed it, then I agree it probably would not be worth pursuing further at this point. Did you ask-what if the cancer progresses-will they resume their payments or can you have another review process?
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To qualify for SSI, the individual has to have less than $2,000 in assets. My sons qualified because they have never worked and lacked savings accounts. In fact, I have to "spend down" the money in their accounts if it is about to go over $2,000 or the government will claw it back.
I sure hope that candy-678 has more than $2000 in assets!
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Candy, I definitely hear that you're not up for a fight. And I still encourage you to consider appealing it. I'm sure their letter sounded very convincing, which no doubt was their intention. Fatigue is not captured by a mini mental status exam (I'm a now-retired psychologist). My impression of employer-benefitted LTD is that they want to deny as many claims as possible, they were almost always total jerks to work with when I wrote in support of my former patient's claims. But I have seen appeals work.
Again, I totally respect that you're exhausted and likely don't want to do this. I hate that this is happening for you!
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Chicagoan- At one point I did ask them about when/if I have progression. They said I would reapply for LTD then, if I was working for the same company. I guess if I got a job elsewhere then I would seek out that company's LTD benefits.
sf-cakes— I had been on LTD for 5 years, and I too think they just wanted to get me off their membership and stop paying the claim.
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candy I don't have much to add as the others have made many valid points. I just wanted to say I'm sorry that you even have to deal with this! Hugs.🤞
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I am still in Candy's pocket for the disability issues and everything else.
We are cool so far but warming up this week, not super gross like it was before. Hoping my splitAC is finished this week.Not planning to go anywhere today, just doing stuff like watching TV to get paid for ads. Doing a quick sweep, vacuum and mop, litter and of course laundry. Handwashing clothes in the sink and using the heated rack to dry them as needed. I want to avoid them getting pills on them.
Not sure what to have for meals, I have eggs, rice, pasta and tortillas from the taco bake, may do a bean chopped in with some of my fibre one and croutons for a fibre explosion and a glass of milk later. I do enjoy the white milk. Need to buy rice as I forgot to add to my grocery order.
Well, the split AC is fully operational. I must say it is very cold, when I get up from the couch, going to turn the bedroom AC to 24 or 75 same as living room during the day and keeping this a bit higher at night to save the electric. As much as the AC helps, I still like stirring the air with the fan. Ava the cat is staring at it, she will get used to it though and so will I.
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Mara sounds like you’ll be more comfortable in the summer heat.
Candy sorry about all the disability stuff. Sometimes I’m moved to tears when I have to deal with medical billing disability and such. I hope and pray it is handled effectively for you.
Waving hello to all.
Zometa and bloodwork today.Tanya
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Whew, I had a day yesterday trying to get a bag of blood. Some mixup with the blood bank (Im AB-, how much of a mess can there be?!), a Nurse in Charge who was useless, my potassium was low again so I got stuck with 4 hours of that too - I got to the hospital at 9am and we left at 1130pm after getting caught behind gates needing a key card. And I was day in-patient on the old ward from April so while the nurses and everyone said hi and recognised me, when I had a higher temp at 7pm obs I started crying like the world was ending thinking I was going to get stuck there and the awful food again ( I was in a MUCH nicer room though). That ward takes a lot of nursing flotsam and temps and it shows - I wanted to be on a 'regular' ward where its teams working together but nope, got that one again.
I had a frank 2 minute discussion with MO about my mental health and my 4-8 pm meltdown period and lack of sleep and she wrote me a script for a low dose anti-depressant. That hopefully will do the trick as I slept 5 hours straight last night (yay!) and no meltdown today. CT scan tomorrow and Im hoping Ill be ok with a soft enough leg to move it around - its getting hard to get in and out of cars after about 3 pm because the lymph swelling prevents the leg from moving around.
@chicagoan That is hilarious - I am a generation younger and we Gen Xers always have swooned over Dave Gahan of Depeche Mode and HIS magical hip moves (clearly lifted from Jagger though!). I cant stand in arenas anymore so I wonder how you manage it, but free shows with good sightlines is a nice perk - have you seen the cost of tickets to these legacy acts?!
@candy-678 I was wondering if there was anyone at your church (or their extended network) who could help or know of resources? Sort of put out the bat signal so to speak, people talk at parties and what not all the time, something or someone may come out of that. What a difficult position to be put into though - but it sounds like your SSI is currently protected and that is ok. Unless I misunderstood.
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sondraf sorry to hear about that whole hospital fiasco! That is one very long day, and I think I would’ve had a meltdown also!
in your pocket for your scan tomorrow.🤞🏻
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