STEAM ROOM FOR ANGER
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I think some people are born missing the compassion gene.
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Just want to scream! My hair is falling out for the third freaking time!!! Next person who says it's only hair might get scalped
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a persons hair is VERY important. I always hated hearing that. It sucks. People are and can be dicks. Even family. Obviously! My daughter is also in complete denial and so is my son. They just think MoM is always ok, she'll be fine. Pay no attention to her dragging herself across the floor for water, she's fine. Now I do have good days here and there. But fatigue is awful and just waiting for the other shoe to drop will alone drive you crazy. ~M~
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Well, just getting older makes one aware of death. I'll be 69 this October. DH will be 76 on the same day. We do think a lot more about death now, even if we don't know what form that will take. Reality eventually smacks us all down. That's why we have to live as joyfully as possible while we can!
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I am exhausted. Just made a HUGE macaroni salad...double batch...for DD's party tomorrow. Will make homemade cream cheese frosting for my carrot, apple, pineapple cake. Haven't made this in years.
This should be a fun event, but not 4 me. I'll have to slap on my happy face and pretend that everything is completely fine. But it's not, and it will never EVER be again.
My cancer has progressed. Big time. I'm having a brain MRI next week to get to the bottom of these numerous headaches, eye spots and ear whooshing. My lower left side started to feel weak yesterday, too. It doesn't take a genius to figure out what's going on here.
I'm hoping it's just some run of the mill brain swelling or some other innocuous thing. Here, take some steroids, and it will go away, but I'm not kidding myself. Worst cse scenario, the tumors are too far gone, get your affairs in order, call hospice. Full brain radiation doesn't sound like a picnic, either. Will I still be Lita after that's all over? Will I still be able to read and comprehend?
And my friend, A.D. just died a wk and a half ago from MBC. She had inoperable brain mets, too. Full brain rads turned her into a zombie/vegetable. I'm in quite a state, as you can all imagine. I had hoped that I'd have at least another year b4 the shit really hit the fan. Well, it's splattered all over the wall now.
I've had to pull my old walker out and start using it again like a woman 20 yrs older than me, but I have no choice. Every time I stand up, my head just throbs, and I feel like I'm going to pass out. I need it for stability.
I hate this. I am beyond anger.
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Lita - I'm listening.
All this just reminded me of a Diane Keaton movie, The Family Stone. The title says it all. Perhaps I will make my DD watch it with me.
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Lita- my heart hurts for you. Makes me so angry that they don't have a cure or atreatment that works for us!! Know you are loved and in my prayers.
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Lita, I am so sorry to hear this.
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Lita~💔💔 please know we have you and you're family in our prayers. You're An amazing woman, I am never giving up, that they will get this under control for You. I am sending prayers and thoughts. So many it's crazy. Hugs sweet Lita. ~M~ You are always a bright shining light on these boards. We love you!
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Thinking of you Lita. Hope the party goes well, and you survive it ok.
That cake sounds pretty good! I'm buying a stool to sit on in my kitchen this week, I might even manage a cake then, or not.
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EVERYONE...go get a stool for your kitchen...preferably one with a seat back so you can lean against it.
It will save your back and hips if you have bone mets.
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I never imagined I could be this fatigued in my life, to the point where I need to rest numerous times when prepping veg for dinner.
So, as you do at 3.30am, I am mentally designing a motorised stool. It would be capable of raising up so I can reach the top shelf in the pantry, and lower me to reach the bottom shelf in the fridge and dishwasher. No, it won't be pink!
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Will we see you on Shark Tank
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That's what I was thinking too, Marijen. Take it there. I can't imagine someone not going in.
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BB, my husband does everything else, and it's a lot. I try to do what I can.
Marijen & Artista, sometimes the voices in my head come up with the best ideas
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BB, thanks, but no need to worry, my husband can't do enough for me. (He is just a really bad cook, and has prewarned me that once he has to feed me, I had better like sardines on toast LOL)
There are a couple of people in Texas that need a damn good slapping! I am hoping there might be a reason for it, but can't think of any at the moment. The ones I am talking about are the people who abandoned their dogs, but left them tied up to power poles or trees so they couldn't find any shelter for themselves and risked drowning.
I used to live in a cyclone (hurricane) area and have been through many, you just don't do that!
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- I actually use an office chair on wheels in my kitchen! Good discussion. Be sure to have the back against the cabinets or wall before sitting as it is prone to fly on uncarpeted floors.
- I pull out the drawers that are just the right height so I can work while sitting. Place a tray on them.
- Another kitchen tip is having everything hauled into the living room to do prep work, watch some cooking shows to distract from pain and weariness. Help needed for that.
- Need a nap, turn on Ina Garden (Barefoot Contessa) because her voice intonations just put me to sleep, so peaceful.
- I used to cook a batch of meals on one day a week. But now I make one recipe that can be served three to four days, one or two of those frozen for doctor appt days.
- Instead of stuffed peppers I make a stuffed pepper casserole, easier. Instead of cabbage rolls I make a layered casserole like a lasagna, easier.
Hubby helps a lot with everything, in fact I think he does most everything now. RANT ALERT:::::: Which is why I was saying about our adult daughter living here who could be doing more, he is working way too much and it hurts his knees and hips.
I got bolder yesterday, I told her I cooked and he helped and did the corn off cob so she got to do dishes and stove. Also I told Hubby to tell her it was her turn to scoop dog poo, her dog uses that area too. And she did. But she should not have to be asked. MY rant started back when she moved in after being in UK for 6 mo and leaving her dog w us uninvited (Hubby said no, I thought it was for 16 days) and instead she quit her job, gave up her car and stayed there and got married. Happy for that, but she had to come back and go through spouse visa approval and we thought that would be a few months but has now been 10 months. She has made two meals, one not asked of her. She has never cleaned a bathroom, vacuumed, swept, mowed, nothing, nothing, not a window, not a sink, not dusting, not taken out garbage, nothing. She does help carry in groceries and put away because I ask. Some dishes but she leaves a lot to do later and Hubby does them, he cannot stand dishes sitting around. She has put our dog out and closed drapes from sun when asked but we put her dog out multiple times a day for months, so well just sooooooooooo. And you might be thinking, ask more of her. But I am getting to that. First the list goes on. She does not contribute to the extra LP gas or electric needed to keep her part of the house warm/cool, does not contribute to the menu shopping though she does bring in her own food for snacks and light meals, I wanted to ask her for the money to offset but Hubby said no because she will definitely probably have a stink fit and I will pay the price with stress, sleeplessness, anger, heart palpitations and even advancement of the cancer or lupus since no stress is the first thing on the list to manage. So I didn't. We are on limited income and my fertilizer division closed so no icing on the cake any longer. I don't want to be petty, really, but never realized it would be months. And when she has been asked to try to do more she said she is too stressed. And when asked to work off what she owes us by doing the household chores and projects we WOULD be hiring a weekly housekeeper to do if we had the extra money BUT when asked, she has said they plan to pay that back once he is back there and both working, so it stands. Hubby works his ass off pretty much all day keeping up and taking care of my needs I cannot do and making sure I get hot lemon water for the cough and all he does, he is wonderful really, while she reads, watches movies and talks to her new husband on Skype (her bill, not mine at least). So my rant is up to date, I am endlessly what is the word - endlessly resentful of her actions and cannot figure out how two very giving and compassionate people like us have raised this selfish, inconsiderate, manipulative person who seems to be all together to the unadvised individual but most certainly is not.
The other day Micmel said, "Pay no attention to her dragging herself across the floor for water, she's fine."
And that sure hit home and I even laughed.
Last night I was cold and asked her to hand me the green chenille quilt and she did. I wasn't strong enough to unfold it and get it over myself, truly disconcerting isn't it? to find yourself that freaking weak? and I struggled with it for awhile while she watched. You see, I feel like this is a test for her too. Does she think she is making me stronger and supporting me by her lack of assistance? Is she saying Hubby is doing too much for me and this is her non-verbalisation of that opinion..... because Hubby spreads out the blanket for me, light or heavy, unless I just do it when I can. When I have a coughing seizure she just sits there and does what she is doing, Hubby wants to jump up and do something at least, like get me hot water or hold my head so the world slows down and to monitor whether I actually am getting oxygen. To her it is just like a herd of cattle, one falls over dead and the others don't stop grazing. Yes, Micmel, I get it.
I can be in the kitchen breathing like I will collapse because when exerting that it the way I breathe --- it is the scleroderma pulmonary hypertension I think but we always thought it was the cancer compressing my airways / superior vena cava vein and the one cancer node at the base of the thyroid / vocal chords. Finding out this week. Anyway... she will walk through while I am trying to move a bowl, get the mixer plugged in, frying food, anything that requires me to stand up and I have been at it awhile the longer I am the more I am struggling and exhausted and even leaning on my arms at the drawer, and she will just keep going and go to the bathroom and come back through the house and out. I think every single time, she will have to live with this. She has been told what is wrong, she has been asked to help more, I have told her her dad is doing too much and I worry about him considerably. She will have to live with this. I know, I still have residual guilt of things I did not listen to or understand about my mother's condition. But by god there is no way I would have let my mom make a meal for everyone and clean the kitchen. I was there in other ways. But that is a long long story and another steam room issue. Just that I know my daughter will someday have to face this.
When she first returned she had to sell all her belongings and did a month long yard sale which Hubby drove her to each morning (20 miles one way) returned, worked here, then went back for her at dusk. I was making dinner for all and could barely walk back then especially. But I am a die hard, aren't we all, I think, and wanted to do for my family. When she was asked for the gas money she said to him, "I thought you were doing this out of the kindness of your heart." Well, I had told her on day 4 home any gas she used had to be paid for, we are on fixed income. But she did not listen. We felt bad really, taking her money, but she chose to give up her vehicle and job and do it that way.
I have been out there floundering with cancer and mixed connective tissue disease (lupus, scleroderma for two) and hypothyroid. I have taken most of this to my poor sister and Hubby. And have not had a support system for years really. Never was to brutally honest as I am right now here on BCO, never on here. When I had to get radiation and was on Ibrance/ Femara then switched to Xeloda, I needed knowledge and came back here. I came for knowledge but found some forums where I can talk and will. The doctors that have failed me and left it to get this bad are up for discussion too. But this one with my daughter I live with every single day. Rant done, I hope anyway.
edited to delete part of a sentence.
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Bluebird, I too use an office chair to get around the house, thank goodness for tiles. I never thought of using it in the kitchen as it's too low, fantastic tip about using an open drawer and a board. I also batch cook, it doesn't take much more effort to double or triple a base and use it for various meals.
I don't know what to say about your daughter, I do have a few thoughts but it would involve the mods deleting this post if I voiced them. Do you think writing down what you wrote here and giving it to her to read would help? Treat her like the child she is acting and give her a list of chores to do daily? It must be so hurtful for you to be treated like this by your own child. It is not right and you deserve so much better.
Those around you need to relieve your stress not be the source of it. I'll be blunt, I'd turf her ass out of the house. She has shown you no compassion, instead she is behaving like an entitled little brat not a grown woman. I am wondering if some of that generation will ever grow up.
My stepdaughter is in her 30's, it's like dealing with a teenager. She wanted to come visit a while ago, I was not well and not up to catering for visitors. DH told her this, she insisted on coming, said she would do the cooking and whatever else she could to help. She spent the day laying on the bed playing on her laptop. At 5pm she came out, said she was having a shower and asked what time dinner was. DH cooked some pasta and I got some sauce I had frozen out. She used all the hot water having a shower, had dinner, left her dirty dishes on the table, and went back to her room. Before I woke the next morning her father had told her to leave. She sulked for a couple of months, but is talking to him again.
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I'm with Freya. She needs to leave. Sorry to be so blunt, but if she can't see what's in front of her then she will never "get it." Do you have a support system (church, social network) that may be able to run interference for you?
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Does anyone else get crazy mean from the steroids. The teenager always tries to push my buttons when he knows he's not going to get far.
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Evacuating yourself and leaving your pet what ever it is behind is absolutely cruel!
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These are the 2 dogs that I know of. Breaks your heart.
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Ah! Only subhuman people could do this. I hope they get rescued and NOT given back to their owners should they come forward!
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I'm a huge animal lover. I'd be pissed if it was a gold fish. A living creature who depends on you for their life should be treated just like you do the humans you care about.
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Those fiends are scum of the earth! LOCK THEM UP!
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Lita- my heart hurts to read your dx. My little piece of the collective energy of the world and and my prayers are with you. Hoping it's just some other annoying issue that can be swatted down.
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LONG, SELF-CENTERED RANT WARNING. Sorry.
Hi all,
I've been smacked down by a major depressive episode for a few months now, so I have not been on the board a lot.
I feel unworthy to rant about my issues, because they pale in comparison to so very many here. But I need to tonight...
I never got over the radiation fatigue, even though rads ended in the beginning of March. I had a gut feeling something else was wrong. Haven't had any income since the end of May. Racking up the credit cards, withdrawing money from my retirement accounts. I'm working on my appeal to my LTD company; I was too impaired to send them the paperwork they wanted mid-May. Got my final work termination papers this week, but I can't make myself open up the envelopes right now.
I went through the whole cancer process alone. My DD was 6 hours away at college finishing up her Masters, and my friends sort of brushed the topic away when I've tried to talk about it. (You know that one.) The worst part was the early part with the scary, painful, emotionally traumatic biopsies and MRIs, and waiting for results, alone. This forum has been a Godsend to me.
I've had varying back problems for years, so I wasn't too surprised when the pain got worse. Fatigue remained; I have to vacuum (when I can muster the energy) sitting in a chair. I can't deal with yard maintenance but for a few minutes at a time, and then I get out of breath and have to rest for an hour or more. I quit cooking months ago; food repels me most of the time, and I don't have the will or energy to cook. Depression set in in April, but I thought I could manage it with counseling. I couldn't, so I started an eight week intensive outpatient therapy program. I have not been able to take that first Tamoxifen pill, and I can't cope with my feelings about it. My plan was to wait until I felt relatively "normal", so I could judge it and its potential SEs fairly, but I have yet to feel vaguely normal.
I came down with shingles in May, then got a UTI in June, and then oral herpes that wouldn't clear up, and then in July I developed constant tingling/burning/pain in my legs with some "dead" spots from the knees down, and to a lesser extent, my hands. (I didn't have chemo.) Alarm bells went off this time.
My GP had no suggestions. I went to a neurologist to rule out some unpleasant possibilities, and she wasn't helpful; her initial projected diagnosis of "myofacial pain syndrome" was flatly refuted by the physical therapist who's known me for years. He said he couldn't treat me for that, and told me I needed to keep looking for an answer. My therapist rather smugly stated that stress was probably causing all of this, and that we just needed to start a rigorous stress-management program. Oh right, ALL of this is "in my head" ?
I just saw the orthopedist who operated on my shoulder a few years back, and got part of an answer. He took new xrays. He called them up on a screen, looked at me, and said, "Your back is a mess." Many more seriously degenerated discs, the mild scoliosis I had has worsened to the point that it is twisted and collapsing, something called "flatback syndrome" (which can cause fatigue), and I'm getting an MRI next week to confirm spinal stenosis. He was kind and sympathetic. Bless him; I needed that. He did say that none of this explains the peripheral neuropathy that keeps me awake at night, so I have to locate and get an appointment with a rheumatologist, which is another hurdle.
I've realized I'm going to have to pay an attorney to help me with my LTD appeal. How the hell do you construct a coherent narrative out of all of this? I can't until I see a rheumatologist anyway, so the time frame keeps getting pushed back again and again.
I've bottomed out, I guess. I don't see much of a future ahead of me that makes Tamoxifen worth the added side effects. Tonight I'm looking at possible financial ruin, a body that won't let me do the things I love (home repair/remodeling, gardening, volunteering), or even basic life necessities (housekeeping, work, personal grooming). I feel "stuck". My brain can't handle the type of high-pressure multitasking my line of work requires, because I'm sleepy most of the day. I can't stand or walk for very long. I can't perform or pay for the repairs my house needs so I can put it on the market and downsize and move closer to my remaining family members. DD has flown the coop to another state for her new job with her BF, and her need for me has declined significantly.
Yes, call the Waaambulance. I know, this all sounds pathetically whiny compared to what so many of my fellow board members are facing.
Yes, I'm just having a really shitty night.
I just feel trapped in a body that has turned on me. My once strong-as-an-ox body feels like a car brought down by corrosive road salt, rusted and headed to the junkyard.
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Freya, I have to take little breaks too, but mostly because of pain 😥
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Fotheringay - you need a rant, that's for sure. There's nothing "pale" about what you are facing right now.
Hope a few questions help you find some clarity.
- Most rheumatologists require referrals. Can the kind ortho refer you? And place an asap on that?
- If what you are dealing with is autoimmune disease(s) then it could be years before a dx. So is there another way into the LTP appeal?
- Is there someone other than an attorney to help you with paperwork and filing, someone who can understand it all and knows you well enough to pull it together?
- IMO most on chemo and hormone therapy are unable to differentiate what SE is from what until long time later when they can look in the mirror. Taking the tamox is a step toward recovery. That is what you want most and you know it. There is hope and there is a new road opening up a lane all the time. If you are afraid of the tamox, can you discuss with your MO and perhaps begin at a low dose and see how it goes then move to the dose they want for you?
- Will you please tell us tomorrow how you feel about things when you wake up and see the sun shining? Maybe sit in the sun or shade in the quiet for awhile?
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