STEAM ROOM FOR ANGER
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how annoying! It is so hard when things are not where you want them and you try to keep things together in one place and label them correctly so they stay together. I know we had one military move we had where we had a lot of stuff packed and arrived broken since someone must of dropped a box or something and we had to file a claim and get new stuff. We learned right away though that family heirloom stuff you pack and hand carry yourself.
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I'm struggling to figure out what has been worse, my cancer journey thus far or the constant struggle with the evil healthcare organization that 99% of my care comes through and having to work everything through a very lame duck Medicaid program. Right now, said healthcare organization is requiring patients to sign a document that waives all HIPAA rights and private financial rights so that they can share whatever they want with whomever they want whenever they want and however they want. There will be no audit trail unless someone accesses information through My Chart. If patients contest the agreement, then they cannot receive services or see providers who fall under the umbrella of this organization. This is a huge organization headquartered here with facilities across the US.
Shame on them, they're technically a nonprofit. Their primary slogan that they slap on everything is "Extending the healing ministry of Christ." What !?! Umm, nope, I'm not experiencing that healing ministry now and never have since beginning this nightmare with them. Their talk and walk are worlds apart. I filed a complaint, but Heaven forbid someone from Medicaid step in and tell this organization that they are breaking state and federal statutes. There doesn't seem to be any justice anywhere in this scenario.
As for having Medicaid as insurance, if I ever receive a current and healthy list of providers who actually participate in Medicaid, I'll lick the pavement in front of my apartment building. Safe to say that my tongue will remain pristine for the foreseeable future. I would lay odds on that!
Thanks for the space to share. It's all very overwhelming, especially since I'm doing life on my own in the natural.
Sending out prayers of support to all of us who are facing so many challenges in an already challenging world.
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Golden, all I can say to this is… Yikes!
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Does anyone have advice on helping parents age in place? My parents live 2.5 hours away and my sister who has power of attorney and isn’t helping them get in-home services is pushing them to move to assisted living nearer to her. She has cut me out of all medical and financial information and has a history since childhood of being manipulative and dishonest. I need help looking out for my parents wishes. They have cognitive decline and health issues that need regular doctor visits and help with understanding their care plans.
I am totally stressed out by the situation. It hurts me that I can’t trust that their wishes for aging in place are being respected. As much as I regret the deterioration of my sibling relationships, I would never treat my sisters the way they are treating me.
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check out AAR{ and they have a ton of information on there on aging in place and services and caregiving support in there. Some you can access without being a member of AARP. I know it does not cost a lot to join if not and they do offer a lot of good discounts as well and for me kind of worth it and do enjoy the magazine they send me. They also advocate for a lot of Medicare and Medicaid and have a big group of attorneys that do pro bono work for them up there.
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Hi,
I'm glad I came across this forum. I feel like I can't rant or complain to my loved ones because I already feel tremendous guilt for having cancer. I have been overwhelmed by emotions and honestly, the majority are anger. I think I'm dealing okay but the health insurance and trying to talk to my health care providers puts me over the edge. It infuriates me that I have to go through an AI, then wait on hold, then be transferred to talk to the right person or department, and then when I finally reach a human they are incompetent or lack any semblance of empathy. I was told the other day that I had to call back the next day because the office was closing in 20 minutes and I should have called earlier. I had waited on hold for 45 minutes.
Thank you for creating this forum.
For all those that don't feel heard or listened to, I am reading your posts and hear you :)
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Roslynvaz, you have every right to be angry. They put you on hold, its their fault, not yours.
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Dealing with cancer treatment and then insurance issues is terrible. Had MO want me to begin Prolia shots since meds were zapping my bones and we had to wait 3 months before they went back and forth and they had to fight to get it approved. If broke stuff of course they sure would have paid for that and it would have been worse and put me further back along in treatment.
OO
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July31, It's not stupid at all. I've got mixed feelings about restarting xgeva. It's a real toss up.
Prolia (for osteoporosis) is a weaker dose of Xgeva (for preventing cancer mets in bones) which is very expensive. I took the xgeva for about 4 yrs but I needed root canals. Off for a while now and osteoporosis got bad.
Don't want compression fractures in spine or broken hips. Both debilitating and painful. Even deadly. Nor do I want more cancer in bones. That was so painful the Dr said it had practically paralyzed my arm. But bone mets don't usually kill you. Sure like the idea of reducing chance of bone mets/progression of any kind. I didn't have any side effects but it is a scarry thought. I talked with an oral surgeon and he said with onj you have to just wait it out and file down sharp edges. Hurts too but not like the other 2. I think you're screwed either way. Damned if you or don't. I've had 9 good years stage 4. Doc said I could have 10 more. Sure would like them to be pain free. I guess I'm ready after clearance from dentist. There are now cheaper biosimilar copies of xgeva. Don't know if Oncs using it yet tho. And nobody wants to hear any of it. Dang.
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Cancer is bad and bone loss is bad. MIL broke her leg and ended up in bed and it never healed with her health and had to send her to rehab even for intensive therapy and still did not help. She got worse and worse and spent the last few years of her life in bed and her whole quality of life went away. She told me once she wished she had just not done any treatment and just died at one point. Sad.
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Waiting on the results of my mammogram is making me crazy. I had a screening mammogram last week instead of a diagnostic one. I can’t believe I made that mistake. The stress of dealing with my siblings and parents so overwhelming that I’m mismanaging my own care. I just can’t seem to “adult” correctly these days.
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I had a screening mamogram and the radiologist later told me going forward I should always get just the diagnostic one. But apparently insurance requires the screening first. That's nuts.
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My oncologist ordered a diagnostic mammogram but the mammogram dept insisted that I needed to get a screening mammogram first. It was a stupid waste of time and money. After I had the screening mammogram, the radiologist said that they didn't think I needed the diagnostic mammogram. I made them contact my oncologist and finally got it. This was in my breast that has tumors!
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I know where I get mine if you have been diagnosed once you automatically get the other one and then they get it read while you sit in another room and then if they want more pics or an ultrasound you get that too and then you can get the whole report online in the portal before your MO and PCP get copies of it. They also tell you before you leave it is an issue and if you need a biopsy to be scheduled or come back sooner if there are issues they are watching. Helpful so you know before it is written up officially in all the medical stuff.
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How many of y’all have DCIS and calcifications spread throughout both breasts? What do you understand the risks to be if you do?
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I was DCIS to start with and tried lump and then had to re-excision and then ended up with MX since could not get it at that point and BS said had to go to get rid of cancer and then had to all the other meds after that for 10 years. Non cancer side has issues though for me they have been keeping an eye on now. Did have nodes out but escaped chemo since they said since had MX did not need it. After my first MO retired though and was given a new one in same practice after about 7 years in she questioned why they did not still do rads on me since guess she would have done that. Made me nervous though.
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My screening mammogram didn’t find anything of concern. But the realization that I have DCIS and calcifications spread throughout both breasts makes me wonder if I should have them removed. It feels like a ticking time bomb on my chest. Maybe the very unfortunate impact of current world events on design and construction projects is a perfect time to do it. But the idea of another major surgery isn’t all that appealing either. It’s almost 5:30am and I’ve not slept a wink.
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Can you get a diagnostic mammogram for more clarity about the DCIS and calcifications? Have you discussed findings with an oncologist? Hope you can get some sleep.
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Agee talk to you MO openly about your concerns. Either they can reassure you or make suggestions on treatment options at that point. I know there is a chance it is something but if you are doing things you should be it could be they want to watch it and have you checked first before more surgery. Know it is worrying you. If you are wanting another opinion also a call to BS who did first part may help if someone you trust.
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Kathryn my sil had them too. Fid years of biopsies. Fed up with that she had them removed. Very happy with the new girls
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