STEAM ROOM FOR ANGER
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Bluebird, Thank You. Just knowing someone gets where I am is comforting. I’ve been building up the resolve to call Amy and I finally did tonight. She’s not answering her phone and her messages are full and not able to leave new ones. Probably just as well. I still don’t know what to say. We found out the arrangements today. Visitation on Friday and funeral on Saturday. I’m sure most of our school system will be there. We are all thankful that it is on Saturday as we all want to go show our support. I plan on going to the visitation but am unsure if I can handle the funeral. It’s juat so damn depressing
Funny thing. I called one of our former substitutes who had filled in for me and for Amy a LOT over the last 4 or 5 years to tell her. Last time I saw her was just after my diagnosis before I knew surgery or treatment details. Just the scary truth of “I have cancer”. About a week after I saw her she went for her mammo and they found spots on both sides. She had her DMX about two weeks after I had mine. She’s on her 3rd of 4 chemo treatments and will fill the TE when she is done with chemo. We talked about the sheer joy of having stains removed and the depression of looking in the mirror. It was a crazy talk but we laughed our way through. I had the best time talking about cancer and what it has done to US with her. It really is a sisterhood that supports each other. We don’t be want to be in it, but we sure do know Howe to lift each other up.
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TaRenee you are right that it does help when you find someone who "gets it" and it definitely helps to have someone who can be your personal sounding board when you need it. It still stinks.
Saturday funerals are the best way to go if you ask me. I know they charge more to do them most places. My BFF who has her own set of health issues including cancer scares and biopies have both said we want Saturday funerals. It is too hard for people to take off an be there sometimes and often employers won't let you off work unless it is a direct family member. That stinks too.
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TaRenee - there are some threads on BCO that are not so active now but are wonderful and uplifting to read, no matter how much sarcasm is on each page.
Start from the beginning on any thread when you have time.
You know you're a breast cancer patient when
OMG They found the cure for stupid
Bonfire of the goddesses
Insomniacs place to talk in the wee hours
There is anger and sorrow and camaraderie.
Swess - I am in the production of applying for SS Disability. Daunting.
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I think I’ll start with the cure for stupid. That sounds like a good one! Thanks for the suggestions
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marriage falling apart. Not that it was ever good. But now I’mfinancially trapped. WTH do I do?? I cannot stand him.
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Swess,
I am so sorry. I have no advice that will help but I will be thinking of you.
You are in the middle of applying for social security, correct? Would you be able to affor living expenses on that if you had 1 or more roommates?
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unfortunately, no. We separated 12 years ago and I couldn’t make it. And my income was more than what SS will be...if I even get it. And roommates are a no go. Been there, done that. It was awful. Never mind I still have a child at home.
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Swess you might want an attorney who specializes in disability claims to help if they deny your claim. I know they do not charge unless you get it but don't know how much the fee is if they do it. Try it first on your own though. Make sure docs are on board too.
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go to ssdfacts.com forums. Folks there know a lot about disability and tons of info. Best site for disability.
This is for social security disability.. mods there are very experienced.
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My mom died two days ago. It was a very rough 5 weeks-she had a massive stroke but was working hard to recover. After a roller coaster of miraculous improvements followed by setbacks, she died in peace. I was in peace, grateful that I will be the one to bury her, rather than vice-versa.
Yesterday I was finally back at my own home, working on her funeral service and clearing up another mistaken $10,000 hospital bill. The phone rang and it was Liberty Mutual-they are consultants who manage my medical disability program. I have been on long-term.medical disability for 11 months. My former employer pays me $400/month and pays for my health insurance until Medicare kicks in. The bulk of my disability income is now from Medicare.
The woman calls all cheerful on the phone: "We have decided you can go back to work!" I was like "What!" They had done a review of my medical records and based on a conversation with my oncologist's office decided there was no reason I could not go back to work. I asked if she had actually seen my medical records. I have had only one clean scan in the past year. My January 2017 scans were great-since I was grossly metastatic, Ibrance worked miracles. In April 2017 there was concern that I had a separate kidney cancer. In July 2017 something new and suspicious was spotted in my right lung. In October 2017 there was concern that something new is growing in my spine. My oncologist has stayed the course with Ibrance since overall I was feeling good. I'll have new scans this week to see if there is cancer growing in my spine. I have never been declared in remission/NEAD so I was completely stunned to learn the disability consultants think I am somehow cured. They want me to see another oncologist to review me and get me back to work. Has anyone heard of a person with Stage 4 cancer being declared fit to go back to work against their will?
The woman from Liberty Mutual put it all on my oncologist. I contacted their office via MyChart explaining in detail why I cannot do my former job given my energy level and weakened immune system. For the first time ever, my oncologist called me at home and said her Physician Assistant handled this based on office visit notes. Apparently when they ask me how I am doing now, I better say "Fine, for someone with Stage 4 cancer!" I don't have pain and have regained much physical strength but I have the fatigue that comes along with Ibrance. I feel so angry and frustrated. Even if I was feeling great, the likelihood of me being hired again to my area of employment is nil-it is well known that I have Stage 4 cancer. If my scans suck this week, this will all be moot. It just makes me so angry that even though I'm in Stage 4 I have to prove that I am not full of energy and vigor. I'll see the oncologist in a few weeks and try not to scream at the physician assistant.
I'm pretty sure this will get straightened out but it is so frustrating to deal with so many bureaucratic hoops, again and again. I have had so many screwed up medical bills. My last scan report claimed I had had surgery-which I never had. Even though I pointed out the error immediately to my oncologist (she and her PA apparently missed it), I was the one who finally got it corrected after numerous attempts. It's bad enough dealing with the cancer-but it feels like its the bureaucracy and bullshit that will finally kill me.
Rant over-I do feel better.
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Chicagoan, I am so sorry. My Mom went through an illness for a couple weeks and I felt helpless her doctors said she had the flu. She call me in the middle of the night to come over to her tell me how terrible she felt. I would call doctors make appointments to hear they didn't find anything. Everyday she seemed worse the day she felt better She had a stroke and we rushed to the hospital. Never have I felt so helpless but finally 4 days in intensive care they got her medicines worked out. I hate that stress of not being able to know what to do. It killed me to hear her suffering. My situation seems so small compared to yours and the stress was killing me. I can imagine yours was and is many times greater. I believe it will get sorted out and you should get ssdi with stage 4.
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Chicago~ I think that physicians assistant should find another job! They can't get away with that. That's crap!! If you're applying to federal disability, you should streamline through it all. The private companies are the real dicks here. Immediately file an appeal with them, I would have someone else fill out the paperwork, not anyone with the word assistant should never be used in the same sentence with cancer! I have the terrible ibrance fatigue, it could stop a train! So annoying! Don't give up. Immediately file a written letter to your disability company, so they have it in writing, they will have to go back and reevaluate your case obviously, you cannot be working! That's just ridiculous! Miss you around. And I am so very sorry for the loss of your mother. I remember she wasn't feeling too well and you were worried about her! I am truly sorry. You're a strong woman. Much love ~M
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Chicagoan - I think I would have reached thru the phone and b*tch slapped the Liberty Mutual lady. I can't believe "they've" decided you can go back to work. What. The. F@ck.
Despicable
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Thanks Meow, Micmel and Scared-I just needed a place to rant last night. I am on SSDI fortunately but this disability pays me a whopping $400 above SSDI. It's not a lot but of course it helps. It also pays for my health insurance until I am eligible to switch to Medicare. My gut tells me they are unhappy that my health insurance costs are so high thanks to Ibrance and are trying to push me out. I appreciate your sympathetic comments.
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D*mn Chicagoan....I feel your pain.
If it were me, I'd be telling that PA if it EVER happens again, you'll be holding her liable and reporting her to the medical board for malpractice. I'm a kinda you get one mistake if that gal. And I would be making them sort it out. And come to think of it, I would probably be reporting it in writing to the medical review board anyway, so that if disability comes back to haunt you there's a written record of their SNAFU.
That being said, I'm in a bad mood, because they moved my surgery up by one week. So maybe I should look at this response when I'm calmer....
hugs,
Holly
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It is like being caught in a pinch - they ask how are you feeling. Fine or Improved or Better are wrong answers??? Can't say you're depressed, that might get you locked up. Can't say you feel like hell because you have to prove it or something. They ask what is your pain level NOW. Right now? I ask them. Or a half hour ago when I was at level 9 and almost went to the ER? No, now. Well 3 now. But get it in there that I was level 9 because that counts, it really does. And what is your fatigue level. Now? Or most days when I am at a level 7 fatigue and can barely breathe? Now. Now a 4 since I just woke up two hours ago. Ugh. Chicagoan, I do hope your case is not interrupted and this just dissolves w/o much more effort from you.
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Thank you Holly and Bluebird. I so appreciate the empathy and good advice.
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Bluebird, I think I remember you saying you were applying for ssdi. I did that about 10-15 years ago. Got approved on the second try. Long story. But, let me tell you, they LIKE depression. An online friend told me that after she got approved. I went to a therapist and got dx with depression. One of the many things that helped. Tell them how you feel on your WORST day. I can try to answer questions you have although this is very state dependent. The feds were pissed at NM when I got mine, complaining they did it too slow and turned too many people down. My file "was selected for federal review." Best thing that ever happened to my file. I did it all myself online and saw it as a job. I can dig out some advice I wrote to people later who also applied. Let me know.
Chicagoan, long term disability from work is different. I guilted them severely. I told them not only did they put obstacles in your way to get you to give up, they counted on it. This is their plan. Get people to give up trying. Tell them you have no intention of giving up, no matter how hard they try to get you to. I got approved right after I wrote a letter saying that. They need to know the jig is up.
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KB870: I didn't want anything to do with that bell. After treatment ended, I found another oncologist for my follow-up and for ordering my future digital mammogram. I told my surgeon, and she said, "I thought you might do that." Ever been in a situation where you know someone is smart and trying to help, but is such an asshole? That was my Oncologist. I would get angry and then I would cry.
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Jaycee,
Thanks for your response. I did already start with the guilt trip and made it clear I do not agree at all with their assessment. Someone from the actual company called me on the qt and said to have my doctor call Liberty Mutual and try to kill this. I think it will go away but believe me, I am not giving up without a fight. It's not only for me-I am just flabberghasted that they want to get Stage 4 people off of disability even though they know there is no cure and the cancer can flare up at any time. Grrrr.
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I know nothing about this process but it sounds like with some effort on your part it will be straightened out but so what if you did go back to work and just couldn't perform, ie, you were late due to insomnia and a bad night, fell asleep at work from fatigue, performance was down, many missed days for doctor appointments and illness.... so what happens if fired because you could not perform the duties for which you were hired? This infuriates me and so sorry they are trying to do this to you. I have a different yet similar situation. I should be on Workman's Comp but I was naïve, tired of being bullied, and they just wore me down til I gave up. Huge mistake and to this day I am unemployed, unemployable and supported by family. Don't give in to them!
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To follow up on my earlier posts this week. I went to the wake last night. It was PACKED. Lines out the door. Took an hour and a half just to get to see Amy. What a tremendous outpouring of support. I broke down a little when I got to Amy. When we left the line was still out the door and it was only supposed to last another 30 minutes. I’m sure they were there a lot longer. I was glad to see and hear so many people there to support her.
I decided not to go to the funeral today. The burial is going to be private for family only. I think they are going to need a break after the crowds from last night. I plan on going to see her later next week. I know it is going to be harder as the people fade away after the funeral.
Thank you for hearing me out and responding both private messages and on this forum. This cancer journey has many fascets. I am sure this won’t be my last cancer related funeral. I hope they are few and far between. But I feel better prepared myself for the emotional turmoil they bring.
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Tarenee~I am so sorry that this has happened. You're a good person and friend,you will be there when all the calls stop and the concern fades into living. You will be there when it's too quiet for her she might scream! I hope that she can find some strength in knowing there is no more cancer for him.....anymore. I hate you cancer. ~M~
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Janet - yes please! Anything you want to send me. I needed to do this years ago but was making too much monthly from my business. Now the income is way way down since they closed the organic fertilizer division. I could sign it over to Hubby. Not sure what to do yet.
Biggest problem is that in all the years my taxes were done for me, we filed jointly. I always figured the fed taxes were taken out for me to later get the credits for SS and disability. Found out a few years ago they were not always taken and I was credits whort. IRONY! The less profit I made were the years I spent the most to grease the wheel of our economy, doing my part. Advertising, printing, websites, on and on and on and on. But those were the years I also worked the most hours - 40 to 80 hrs a week easy. And now I don't have all the credits I need. It makes me so upset. I need to research the SS forumk and get all the facts. I want to do this w/o an attorney helping. If I do it all correct then the approval will come w or w/o an attorney.
You mentioned depression. It is in my file. The one drug I take at night is actually for depression but I started it for cough reflex. And the oncologists have me listed as depressed. Hope that will be enough.
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definitely ask questions and research ssdfacts.com forums. Dont waste money on attorney just to apply. If denied then. Good luck. That forum helped me tons.
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KB, I once was asked many different times if my child was exposed to cigarette smoke. I mean can't they smell it I certainly can. They assume you are lying so they keep asking they don't know you from the lowest human beings on earth. I have also aged alot since my cancer dx, I went with my mother for her "last" routine colonoscopy and the nurse talked to her as if she was a dim wit. I was appauled and reminded the nurse there was nothing wrong with my mom's hearing or her mental capacity. I hate the ER, they don't know you and assume the worse on every front.
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Kb~I am sorry you were treated that way. I have decided I am making a huge big foam finger to take with me to any ER visit in the future, it will look like this
🖕🖕🖕🖕🖕🖕
~~~~read the file first, ask questions second.....don't insult me.... we know our medical histories, like we know our own breasts. Oh wait I don't have one anymore oh yeah. Ok bad example. Like we know our own faces....welp.. since I look nothing like I used to and my hair had spots of gray....ok so another bad example....I'll have to hold the foam finger in My right arm because I have lymphedema That started in my left arm... . another parting gift. Okay just read the file!!! And ask questions, relative questions! Do not insult our intelligence! Big hugs ~M~
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Question - when you go to a hospital or clinic you have been to before and recently too - how many of you fill out the allergies and prescriptions if they are unchanged? And how many write - see my file?
I get so tired of trying to remember all these and spellings and explaining to the nurse who is only half-listening if that. Usually ends up w wrong answers when I at one time had the most precise information I could manage.
KB - I cannot imagine why they would not allow your significant person or spouse to be in the ER with you. Except if you crashed and the other was kicked out then. Or there were kids to keep in the waiting room and no one to watch them. Or the other person there for you was sick or drunk. Just cannot understand why they said no. I could not go along with it, But when in a situation where I am too sick to argue, then they might get away with it.
KB - they are lucky you have such restraint.
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KB, you can vent to me anytime, you know that!
My lumpectomy went wrong and I hemorrhaged into the surgical site and my boob was the size of a beach ball. Surgeon saw that and rolled me back into surgery, opened me up again, cauterized the bleeders and re-stitched all the internal stitches that had torn out when the blood wrenched my boob apart.
Never have I been in so much pain.
Two days later the pain was so bad I could not move, could not get out of bed, could hardly stand up. The pain was down my side, stomach, abdomen to the pubic bone, it was all angry purple. Hub got me in the truck and took me to the emergency room because it looked like I was bleeding to death internally, all of it pooling under the skin on the left side of my body.
SO there I am, sitting in the rotten hard chair at admitting, in obvious agony, trying not to vomit from the pain, every breath a torture, and some nonchalant, utterly unconcerned idiot woman is asking me questions. I tell her I had a lumpectomy two days ago. She looks up at me and says, "What's a lumpectomy?"
Honest to god, I could not answer her. I stared, open mouthed, at the absolute ZERO IQ requirements they obviously had for their front line people. What is a lumpectomy? Are you kidding me with this shit?! And as I formulated a response that would have seen me ushered out with security on either side, Hub stepped in and said, "she has breast cancer, they cut it out of her."
I still spent another almost 4 hours waiting to see a doctor who said, bruising hurts. Bruising? I had an incision on my boob and have blood filtering down to my pubic bone and this is not a concern to anyone? Apparently not. Apparently this happens all the time. No one told me! Go home and take your Tylenol. Now I'm mad all over again just thinking about it. Hospitals are about procedures, not people! AAGGGHHHH!
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Bluebird, I write "see your computer". I've decided that question is for first time patients, not for me.
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