STEAM ROOM FOR ANGER
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quietgirl,
I'm so sorry to hear of DB job loss and how it effects everything else. UGH. Because you did all that work to make the insurance work. There's a lot of extra work in everything that happens post cancer dx, isn't there? I hope that he finds another position soon.
I quit saying the expression shit show once I got on Verzenio...because it's literally been that. And more.
Hugs
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oh I am so sorry about the job loss and insurance issues. I always hated the dealing with it all and dreading any change of plans at work when I worked. Hoping there is a new job and better coverage in the future for you. You need some peace of mind.
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Quietgirl, I hope everything works out. Been thru that a couple of times with DH. Luckily I was a nurse and able to pick up hours til something came along.
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I am mad as hell. I just got a message from a dear friend who's had MS for several years. I'm furious and terrified on her behalf.
"Busy trying to find funding for my MS meds. Have been without my meds for 58 days now. $1900 a month, yikes. Am freaking & experiencing relapse. It sucks!"
U.S. healthcare is worse than any third world country, all because of greed.
Another mutual ffriend our agedied of MS just a month aago.So many diseases suck as bad as cancer.
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I'm so sorry, Alice. That is beyond angering and frustrating. The state of our healthcare system in the US is ridiculous. One could go on at length about the systems that perpetuate this, but when you're someone that is chronically ill, who has the energy to devote to advocacy to the degree it requires.
I'm not sure if this will be helpful for your friend, but this website lists organizations that help fund MS medications, and breaks down guidelines based on whether someone has insurance/doesn't as well as type of insurance they do have: https://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Insurance-and-Financial-Information/Guide-to-Prescription-Financial-Assistance
Sincerely,
The Mods0 -
Thanks Mods, but she's dealt with it for years and has exhausted her funding from every company and organization that offers it. She spends most of her time communicating with them and submitting grants.
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This is horrible, Alice. I am sure the stress caused by her long term difficulties in obtaining funding for her meds worsens your friend's symptoms and relapses. Even those with supposedly "excellent" insurance can run into difficulties like this when their caps are reached. The system is designed for quick fixes, not chronic care, you are on your own if you live longer than their actuarial tables predict.
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Let us know alice if your friend can find some info to help her. I was so thankful I had good insurance in the worse part of my cancer and my surgies and now am on medicare my MO is covered there as wel for my follow-up and testing I do. Best wishes to your friend
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Anger, loss, empty, scared, pissed off, tired. I was diagnosed in 2020, triple positive and I tried to be a good patient. I never missed an apt or was late. I took my chemo and radiation for 52 weeks, lost my hair, lost my mind. I was sick. I mean I was throwing up and sleeping on the bathroom floor for a year. I know a few people that have had no issues with chemo and I envy them and sometimes feel like a whimp. I had a lumpectomy in 2021, and then over the next 10 months I found cysts every month. And I was either waiting for an exam, a biopsy or results. I was just constantly waiting. Then my oncologist and surgeon both suggested I have a double mastectomy. They felt I was going to continue to have the cysts and living the mental nightmare. I had that on Nov 6th. I asked for a B cup or a small C and I was given a D. I hated them. Before I could do anything about them, my right breast swelled up like a bowling ball. I was dead asleep and I woke up feeling like was a clamp on my breast. I looked at it and it was completely deformed. I went in to see my surgeon and he admitted me to the hospital. He said I had seroma. He suggested surgery to remove the implants, he could replace them with smaller ones and insert drains. Did that. Exactly one week later my right breast started to swell up again. I immediately went back in and again he admitted me. He suggested we needed to take them out completely, because the first one didn’t show an infection, and the implant wasn’t staying in place. This last Friday, I had my implants taken out and they gave me a staph infection. I had to stay in the hospital for 3 days while they tested the strain to see what antibiotic would work the best. I felt I was treated horribly and without any empathy or compassion. The nurses left notes to each other on my progress and continued to state that I was difficult and cried. I was on oxy and was constipated so they gave me a laxative. I was on a weighted bed so they would know when I got up and they said for me to call when I needed to use the bathroom. Unfortunately, when those kick in there isn’t a lot of time to wait for someone to come and turn the bed off so I just went. They yelled at me and even wanted to see the toile† to prove I had diarrhea. I even had issues with the doctors that would make their rounds. Because they are a well known, highly rated hospital I think those staff members feel entitled to treat people anyway they want. I’m finally home. I’m completely flat on one side and the side with all the issues is concave. I wonder if that will go away. I’m afraid to go out in public, I am so embarrassed. I feel this is more of a self pity party more than a rant. I should be thinking positive but I am just feeling sorry for myself. I know so many women that have had it worse. I’m just so tired of all of this and dealing with the medical community
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trippostive. Yes it might be true some people have it worse but tons have it better. No one has more or less of a right to complain or rant or have a pity party than anyone else. Last time I checked there wasn’t a committee somewhere who gets to decide that and if there is they are doing a crappy job because if we aren’t suppose to be ranting then don’t keep throwing crap at people. (Again I’m sorry not sure where that all came from but it seems like you have been put through the wringer and that there are notes that say you were being difficult and crying about your situation seems so so wrong. It just makes me so mad on your behalf).
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Trippositive, Even though we sign treatment consent forms which detail some of the things that can go amiss everyone (including the doctors) expects that the rare problems and unlikely terrible side effects won't happen. However, every once in a while someone is unfortunate enough to have a horrible experience. Yours was the implant surgery while mine was radiation. I found that the medical professionals almost didn't want to acknowledge what had happened since in hindsight the advice they gave caused much more harm than good. Even though doctors don't intend to cause harm, acknowledging what happened probably makes them feel a bit guilty and aware of their limitations. The nurses and rounding doctors don't like being reminded that medical treatment can occasionally be extremely detrimental rather than healing. That means the unfortunate patient gets perfunctory care and no empathy.
No patient should ever be treated this way. I've had way too much time to analyze why this same thing happened to me. At least the pulmonologist whose patient I became sympathized with the fact that SOC treatment for stage 2 breast cancer could be fatal in my case and has irreparably changed my life. His comment that a lung cancer radiologist would have seen the red flags in my medical history did not make me feel any better, though. Go ahead and be angry; I was for a while until I decided it took too much of my limited energy.
I hope there is something that can be done so you don't end out being one of the rare treatment casualties. I agree that there are people who have it worse but this doesn't mean that we should be shoved into a closet and hidden because we are living examples of what can go wrong. You have my empathy.
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trippostive feel to vent all you want. Cancer is awful all around and some have it easier than others but it is hard for them as well. You have had more than your share of issues. May you heal quicky.
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In order to be transparent, here is our post on the Glitch thread:
"In an effort to put an end to the continued derailment of the true supportive nature of the community and this thread in particular, any post that does not address a specific tech issue, question, suggestion or glitch will be immediately removed, and members who continue to disabuse this thread in a campaign of bullying against BCO will be subject to suspension or ban.While we're sorry for the tech issues we've all experienced in the last year, we can't allow this to continue for the health and growth of our community."
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Ok just confused, I haven’t been on much until recently. Is the steam room no more?
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benny, I wondered the same thing. I got an "update notification" but when I clicked on it, it said "not found."
Mods, I'm sorry if some people were using this thread to abuse you. I thought it was just place to vent about our struggles with life with cancer. Again, I'm sorry if the venting was directed at you.
You are appreciated - even when we're frustrated.
Carol
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Hi! Our apologies for any confusion here! We were just testing the system, posted twice, and deleted our posts! So nothing to worry about.
@sunshine99, thank you for your kind words. They are truly appreciated.😊
The Mods
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Hello and have not been on for a bit since had issues after a bad fall and surgery. Been dealing with this for over a month now. Go to bed and my days go from the bed to my chair mostly. OT and PT are coming to the house. Have to wear a collar in the car if I go to an appointment. Had to put off other doc appointments since can only deal with one thing at a time.
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Oh @bcincolorado that's terrible. We are sending you strength and gentle hugs!
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So sorry, bcincolorado. Take care of yourself and know that we’re all sending hugs and support.
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Apologies, bcincolorado. remember that we're all sending you hugs and support.
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I am still recovering from my fall. I am glad the Prolia shots I had did some good and no bones broke when I fell since I lost a lost of bone with cancer treatments and MO put me on Prolia for a couple of years. Then had double up on calcium after that for about a year while she watched me and scanned me. Now have to keep up on calcium on regular doses again and get scans just in case. Cancer does a number on the body that is for sure.
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Bcincolorado I hope you are feeling stronger. I dont respond often, I get really overwhelmed on all these different threads, but really enjoy keeping up with familiar names.
I am here to rant about yet MORE blaming. "Exercise". "New info" yay!
W e l l..., let's see, I was a pro dancer now dance teacher. That means my whole life has been basically exercise! I am now a potato because of treatments!!!!! Stupid Dr's who don't know me: "it's good to exercise and be a healthy weight." Shut the F up!!!! De novo here! Pre-diagnosis, even middle aged I spent 5-6 hours/day in the studio! That doesn't include my own PT for old injuries I do, or the 1.5 mile each way trip walk...Now cleaning the bathroom winds me. Sigh. I'm good, treatments are fine, scans soon, I'm just grumpy and tired. Yes Bcin, cancer does do a number. Now go run a marathon or take up martial arts, lol.
I get it, exercise helps everything. I personally Do feel better when I have the energy to do a little.
BUT ITS NOT THE REASON OR THE CURE.
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I haven't been on this thread in a while, but glad I popped in and read your post, Dancemom. The number of times exercise has been suggested to me when I talk about my low energy level...argh! Yes, I still walk and I still garden, and I try to shake my booty in my living room when a good 80's tune comes on, but I do NOT have the energy that I used to. ALL my meds list fatigue as a side effect. I don't want to add guilt to the mix, as in, I "should" be doing more physically, yet sometimes I feel it. I'm doing the best I can, which some days means I've showered and done the dishes. Other days, I can walk for a long time, or move plants around in the yard and lug bags of bark around.
The next person who suggests that I get more exercise will be met with, "unless you've been on MBC meds for 2.5 years, shut your trap".
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Sf-cakes. YES.
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Completely agree, sf-cakes! Or commenting, "Lucky you! I wish I could lose weight like you are."
Here's my response - well not really, but it's what I'd like to say. "I'M NOT DIETING!!! I'M DYING!!!"
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Just say you DONT recommend this diet.
Some days I don’t want food. Anything. Except cold, sweet, preferably chocolate. Hello Ensure.
Agree some days a shower and dishes are the accomplishment for the day.
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SF-Cakes - yes! I, too, find that some days are just better than others for energy. Other days, I just want to sit on the couch and be lazy. 🛋🦥
Sunshine - really?! People say that?! Sheesh!
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Been needing to vent since my last visit with my “In-laws from Hades”. The minute my hubby told them I was finally finishing my Bachelors Degree, they lit into me with the tirade of “Stop being lazy and get a job! You don’t need a college degree to work in a store or in fast food”. My hubby gave them a look as I quietly got up, grabbed my purse and walked out of their house and out to the car to bawl my eyes out.
Everyone else I know is so happy for me including my mom (who can be difficult to deal with)and telling me to finish the journey, but not my selfish in-laws. My hubby’s step-monster even said some nasty things about my baby sister who was born with Down Syndrome and was in my wedding as one of my bridesmaids. The witch knew I am very protective of my baby sis and makes comments like “your sister should have been left in an institution when she was born, she’d be better off” and “the way your sister’s eyes are in pictures make her look like a monkey” and her favorite thing is “your sister shouldn’t have been in the wedding, its embarrassing that people had to see such a pretty face ruined by a genetic glitch”. I am resisting the urge to throttle the witch but when she starts in its hard and I chose to walk out as my hubby tells her to be quiet and that he wanted my baby sis in the wedding as much as I did and in no way is he embarrassed by her being born with something that only God controls.
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One one bit of advice; go no contact with this toxic woman until she can behave like a mature adult, period.
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mOmmy, your monster-in-law is SICK! No sane person would EVER say those things. I doubt she'll ever change, and I'd avoid her like the plague! How DARE she make comments about your beautiful little sister? I'm spitting mad right now!
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