STEAM ROOM FOR ANGER
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like I said, all questions can be answered on the mc forum on the ss disability site linked. Sign up and get firm answers.
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Did some research online, and spoke to a couple of people at church this a.m. who know way more about SSI/SSDI than I do.
I still have to make a few phone calls, but I will do that on Wednesday. Tuesday is going to be nuts cuz everyone and their grandmother will be calling these offices after the Labor Day wknd.
Glad I DIDN'T do anything too hastily and full on cancel the coverage like i was gonna do. My situation is not the same as most people's out there: I have the benefit of DH's health insurance and altho I do have co-pymts, they're not outrageous. One woman said I "might" be able to use my Kaiser as the Part B supplemental, but she said to CALL the SS office to make sure.
But here's the deal: If I travel (on road trips) to a state that DOESN'T have Kaiser and something happens to me, what happens then? Well, I'll have to pay FULL PRICE for dr services, emergency overnight stay, etc., that Part A doesn't cover, if I don't have Supplemental B insurance. (Medicare Part A, as you know, is pretty much a joke...it doesn't pay for the expensive stuff, so you HAVE to have the supplemental plan.)
So I guess it's par for the course, sigh. We all have to pay for auto insurance, fire insurance, life insurance, etc. I'll miss it, but I guess another 134.00 per month isn't going to kill me. I'll just have to look for ways to tighten the belt. We hardly ever go out anymore (went to see Christopher Robin at the movies yesterday afternoon, but that's about it).
I'm still not going to do anything until I talk to some "professionals" about this. AARP supposedly has some decent plans that I'll have to check out.
Thanks for all your help,
L
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Lita, by law all companies' Medicare supplements have the same exact same coverages, unless you do something like an advantage plan, which is basically an HMO. Only difference is price and customer service, and, I assume, what doctor's accept what companies..
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hi Lita, a working individual will qualify for MEDICARE even if she/he is below 65 so long as he /she is disabled for 2 years.I don't know if you've been disabled for 2 years. So,that's probably the reason why you received a medicare coverage. There are also cases like ESRD-going for dialysis or BLACK LUNG DISEASE that makes them qualify for medicare even though they are below 65.
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hi Lita, a working individual will qualify for MEDICARE even if she/he is below 65 so long as he /she is disabled for 2 years.I don't know if you've been disabled for 2 years. So,that's probably the reason why you received a medicare coverage. There are also cases like ESRD-going for dialysis or BLACK LUNG DISEASE that makes them qualify for medicare even though they are below 65.
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I've been on ssdi for 2 yrs now.
L
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I started to fill out my SSDI application six months ago and stopped when I read that I would be automatically enrolled in Medicare at the two year mark because I'm not sure that's what I want. Can a person collect SSDI and not enroll in Medicare? Will be interested to hear what you learn Lita.
It would be great to cut our $20,000/year insurance premiums in half when I qualify for Medicare, especially since I'm not working now and the premiums are a huge cut into our budget, but I've heard and read a few things about Medicare coverage that is concerning and if true would cost me more out of pocket money in the long run. For example, if you're on Medicare you cannot accept any co-pay assistance funds from drug companies (there was a recent legal case in the news, it falls under federal anti-kickback laws), and my H&P costs $10,000 every 3 weeks with a 20% co-pay, which is covered by Genentech (the drug manufacturer) under their co-pay assistance program. There is no way I could pay $2,000 every 3 weeks out of pocket, how do people on Medicare do it??
I also wonder how difficult it is to get things approved. My current insurance company has been stellar as far as giving approvals often the same day. If my MO wants me to see another specialist or get a scan, I usually have approval and the appointment scheduled before I even leave my MOs office. I'm concerned about how going on Medicare might affect my quality of care with government bureaucracy obsessively worrying about keeping costs to a minimum. Yeah, I know that my insurance company could potentially do the same, but so far they've been outstanding about everything. All this worrying about the automatic Medicare enrollment has been keeping me from collecting the SSDI money I'm entitled to.
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candy678 - here’s a link for you that gives great detail on SSD and stage 4...
https://community.breastcancer.org/forum/8/topics/424992?page=1
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ok nothing to do with SSD. Just sad because my DH and I had our camping van all packed and heading to OR coast for a while and really looking forward to it when part way there we had to come home. I have a stupid tooth that acted up and saw dentists today and need a root canal! Ugh! A root canal instead of a nice vacation with DH. Life is not fair sometimes! I guess I’ll just deal with it!
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katyk, I blew the whole month of August on a molar root infection. It took 2 weeks to feel better from root canal. I am better and hope have fun at Seaside and cannon beach. It is suppose to rain but I think we will enjoy. I'd like to go horseback riding on the beach. Don't know if anyone is doing that in the area. I hope you feel better soon, the pressure pain was driving me crazy, Advil helped me more than opiods.
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Root canal scheduled for tomorrow morning. I’ll let you know how it goes. Not in pain now.
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Candy678- I had FMLA last year and signed up for it this year also because of new medicine with a side effect of horrible diarrhea. It is so they cannot use absences against you in evaluations. Your being absent more than 7 days in a year would be covered with FMLA.
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Misty...SO SORRY about your diarrhea!
I'm in the same "crappy" camp. I have had what my DD calls "blow outs," with the stuff rolling down my legs. NOT FUN! Be sure to keep lots of Imodium and Pepto on hand (whatever gets the job done). Lomotil is available, too, but it does have some side effects, so I'd rather use a Smith & Wesson rather than a bazooka to deal with it
). I wear Depends when it gets really bad. This last Gemzar cycle has been a bad one, sadly, but I REFUSE to be a prisoner of my house and chained to the commode.Good luck to you!
L
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Quick update for all my friends that have posted in response to my FMLA/Human Resources/SSD questions---
I met with the Human Resources Department of my employer today. She was very nice. Her own mother died of MBC 15 years ago after battling it for 3 years ( liver and brain ). I think she is one who can truly understand. She has been with our company 3 years. She was unsure about some of my questions, but seemed willing to get answers for me. She did advise that I sign up for intermittent FMLA as soon as possible. I came home and started the process. She also directed me to a program our company offers ( I knew nothing about ) where I can speak to an attorney about my questions concerning SSD. It will be a 30 minute consultation at no charge. I started this process when I got home also. I should hear from the attorney in the next couple of weeks.
I will post any help/advise I receive so others can learn from this also.
Thanks to all on this site. We truly have each others backs.
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Best of luck on filing candy!
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Ladies, I had terrible diarrhea from the first chemo on. It was debilitating and it lasted well beyond the end of chemo, several months. I was having 7, 8, 9 explosive watery stools a day. Sometimes I would just sit in the toilet and just let it all drain out. It was exhausting and Immodium didn't touch it. There were many "almost accidents" and 2 poo-in-my-sleep accidents. Yuck!
Finally, I went to see a GI specialist. After doing a colonoscopy to make I didn't have colon cancer, he agreed that the chemo had seriously irritated my bowel. He put me on Welchol, an old cholesterol drug whose main side effect is...constipation! Oh, joyous day! Constipation! Well, I never got constipated, but Welchol slowed things down enough that my stools became normal consistency, about 2 a day. My life returned to normal and I stopped carrying around complete changes of clothes everywhere I went.
It took almost a year on Welchol to get everything back to normal. I'm so glad my doctor suggested it. My life was in ruins and Welchol set me free.
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Sorry to hear. I know Lita57 can sympathise. About 30 years ago I suffered terribly and they never figured out what was wrong. After having 2 babies it seem to go away they said IBS. It was the worst and such an impact on my day to day life. I hope you feel better soon.
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Candy- so glad that you went to HR and got help
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OMG, can I blow off some steam before I throttle my husband? He did the laundry today, as he has for many years. He is no stranger to the ways of washing, although he really doesn't get the whole idea of sorting.
Just for fun, how many times in the last 37 years do you think I have said, "Please, please do not wash ANYTHING white/light with my black pants?" Well, at a minimum of 3 times a year (being generous here), that would be 111 times. You'd think if someone told you 111 times, sometimes angrily, to NOT put ANYTHING white/light in the laundry, you'd get the point, right? WRONG.
Today, we are preparing to go back to NOLA to repair my abdominal incision which is a massive mess. I am still under lifting/carrying restrictions 3 wks post-op and everything I do makes me fatigued and short of breath. Therefore, my duties in the laundry consist of sorting and direction-giving. I needed to soak my binders for a bit, because they both had nastiness from my open wound. I told DH TWICE , "Do NOT wash or dry these with anything other than towels or sheets."
Guess what he did? Washed my binders with my black pants. Lint everywhere. Now here's something you should know about me. I only own 3 pairs of pants that I can wear right now, all black. I'm wearing 1 pair and the other 2 were in the wash. When I found lint all over my pants, I got very upset. DH just shrugged it off, saying, "I'll buy you new pants." Arrrgh! What i wanted to say was, "You cretin! We leave tomorrow for NOLA! There is no time to go shop for these special pants! Why can't you just listen when i tell you not to wash black things with white things? HOW HARD IS THAT?" Grrrrr.... Instead, I got out the tape and went to work on the pants. I got most of the lint off and my bags are 95% packed.
But inside I am screaming and throwing a tantrum.
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(((HUGS))) Poodles
There's two kinds of lint in the world: the dark lint, which sticks to light things, and the light lint, which sticks to light things.
Let off your steam here.
Wishing you safe travels and best wishes on the wound repair.
Madelyn
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mustlove, I still have that problem too.
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oh my goodness girl I hear you! I've had clothes that I haven't even had the chance to wear be ruin by someone who doesn't read labels. I love them no less but holy..... Can yenot read!!!!!!
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I'm furious! Something I asked to be kept private, I just found out was not. Wtf is wrong with people?! If I had wanted it shared, I would have shared it myself. 1- it's not YOUR news to share (but by all means, if you want this sucky dx, you can have it) and 2- I specifically asked for it not to be shared.
Fine, have it your way, the next update I give is when I enter hospice. Until then, you all can kiss my @ss!
ETA to fix typi
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I have a neighbor that I told about my BC and I asked her not to tell the other neighbors she did couldn't help herself. When my Mom had a stroke she was all over us to tell them what was happening and I wouldn't say. I told her my Mother will be fine and as the hospital. She called, left messages rang the doorbell. I still wouldn't tell her. She had the gaul to leave my mother a voicemail saying she had heard she had a heart attack. Something is really wrong with people that are like that.
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Mr. Diarrhea is back. Almost shat the bed last night. Don't know if it was the dye contrast from my brain MRI yesterday, or something else.
Today's cancer haiku...
Stripped of dignity
Left with humiliation
Life with my cancer
L
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Lita- So sorry Diarrhea is back. It is so miserable- your afraid to go anywhere and do things thinking you will have to stop to run for the bathroom. Hope it gets better soon.
Finallyoverit- sorry this happened to you. I think its a little bit human nature to want to share stuff with someone rather than hang on to it. We had a thing at church once with just the women of the church, who ever wanted to give a testimony or share something they can because at church they should feel safe to do that and that we are all 'family' and here to help each other not hurt each other. What we heard from someone else was not suppose to be told to anyone else because it is not our story to tell. It was only hard for me when my husband asked about the meeting. What I heard was not my story to tell even to him, but I really wanted to share it.
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I had my surgery consultations. I am doing neoadjuvant chemotherapy and was hoping to have surgery within 4 weeks of my last infusion. This is also when the breast surgeon wants to do it but as they want to do immediate reconstruction to avoid scar tissue complications, the time frame is contingent on the cosmetic surgeon's schedule. The cosmetic says he books 6 to 8 weeks out. Not thrilled as my cancer is aggressive, I don't believe chemo will get it all, and I have vascularity that makes it easy for the cancer to get to my bones, but begrudgingly would do 6 weeks. But I got from his scheduler saying 10 weeks!!!! I said I was NOT ok with that! She finally said the earliest was around 7 weeks. I'm still not ok with that. She tried to pass it off as being in my best interest. I am DEFINITELY not ok with that as I know that is a lie, at least from an optimal time between NAC and surgery to remove the cancer standpoint.
I was too drugged up at the time to express my true level of discontent with this and push for more answers because I was in the middle of my infusion with a cold cap strapped to my head with cytotoxins flowing in to my body and IV benadryl has a strong sedative effect on me, but I am mad.
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I had to wait almost 5 months to get a DIEP surgery with my plastic surgeon. He does 1 a week. I hated the wait after mastectomy. Really tramatic for me. When I was scheduled to have fat grafting the office called me to put my procedure off to accommodate a lady the wanted to do a mastectomy with immediate DIEP. I was glad to help out postponing. I would have liked that.
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Meow13:
I am not interested in immediate reconstruction myself. I just want the cancer out if me fast. But they feel I will have skin/scar problems if I don't do immediate reconstruction. One thing I don't understand is we had talked about doing a two phase reconstruction where tissue expanders/temporary implants would be placed imnediately after the mastectomy to avoid skin/scar problems from developing, and doing flap/grafting at a later date when I have the tissue for it. I don't understand if that is off the table now and if so, why.
One possible issue is, due to another condition, I can't have submuscular implants. The implants/expanders would be under skin only with no glandular tissue to protect them and the breast surgeon seemed kind of surprised the cosmetic surgeon was willing to do this because my skin is very thin. He had mentioned putting a layer of collagen in there to protect it but maybe he reconsidered? I will have to try to get some answers tomorrow but I really just want the cancer out of me above all else.
Of course I have to be a complicated case though. I have loose skin from being overweight for a short time in my teens, everywhere, except my chest, where I have unusually tight, thin skin.
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I'm here to put some things into perspective for myself - and possibly others. (Parts of this were cross posted...)
The first confirmed deaths from Hurricane Florence have come in. Some of us fret and stress over dying from MBC almost every day,. but these poor folks had NO IDEA earlier this week that they would be gone by today, Sept. 14.
The death toll will no doubt rise before this is all over, I'm sorry to say.
I just watched the PBS American Masters episode on Margaret Mitchell, celebrated author of Gone With the Wind. She was killed by an automobile when she was 48 years old, crossing the street w/her husband on their way to the movies.
We should all be thankful we're still here, wicked Mr. Cancer or not. NONE of us is promised tomorrow, so we should just take it one day at a time, if we can.
Blessings to you all, and continued prayers for the people back east.
L
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