Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
Hey, girl. Just checking in to see how you’re doing, today. I’m agreeing with Golden’s prayer for you. Yes, please, and AMEN.

I love to hear about your jewelry finding talent. And, always with an amazing humorous ability to describe a situation; be it jewelry, or even your own health challenges!

Proud to be in your fan club!
(5)
Report

Lea, That’s a long time to be dizzy! I hope that it eases up soon and one day will completely vanish.

It’s true that some people are not capable of building genuine relationships with their family members or with anyone else.

My husband’s grandmother was like that with her only daughter, my MIL who was the polar opposite of her mom.

Hahaha, my mother in law would laugh when she would say that she always wanted more children! Not true.

The inside family joke was that my MIL was conceived because her mother must have come home from a holiday party a little tipsy because let me tell you, this woman was not affectionate with her sweet husband at all!

Many times we witnessed how cruel my husband’s grandmother was to his grandfather. Very sad.

My MIL once told me that she wished her father would have divorced her mom so he could be happy. Back then, devout Catholics didn’t discuss divorce.
(2)
Report

Nhwm, 15 weeks tomorrow of this miserable dizziness......I'm almost used to it. Every day, day in and day out, 24/7. Never below a 6 or a 7, either.

Yes, passive-aggressive was moms middle name. Everything was hinted at or suggested. Never said outright which could be "held against her". I used to ask her to please beat me up and get the misery over with rather than prolonging it with The Silent Treatment for days or other suitable passive-aggressive punishments they love to dole out based on the Crime they view that's been committed 🙄

Truth is, people like my late mother cannot have close relationships with others. It's impossible. They push others away with their behavior and then blame THEM for the fact they have no ability to be intimate or loving.

Those traumatic days are gone now, but some memories come back in dreams which are quite surprisingly vivid!
(7)
Report

Lea, I am sorry about your dizziness. That’s a miserable feeling.

Oh, gosh. Your mom was terribly passive aggressive. Honestly, I would rather someone tell me off, so that we can clear the air and resolve issues, than to have them be passive aggressive. It’s extremely hurtful and quite insulting to our intelligence!

As if, we can’t see through their shenanigans? Right? Of course, we can see through it. Their behavior isn’t sincere. It’s an act in attempting to appear to be sincere, foolishly thinking that they can get away with it. They never do.

Most people can spot this behavior for what it is, yet they keep on trying! Don’t they?

It’s sad for everyone. They miss out on genuine relationships and the people who are hurt, live in perpetual frustration and disappointment that they don’t have the relationships they desired to have with them.
(4)
Report

Hi NHWM. I'm actually feeling extremely dizzy today, a worse day than usual at an 8. 🙄. We do have an Instapot my sister in law gave us which I dislike personally as many foods call for pre Browning which defeats the purpose of the thing imo. Chuck doesn't follow directions on recipes which leads to issues ie: putting all that broth in the soup, cooking the 15 bean soup too little, not measuring ingredients in the meatloaf. But when he bakes he's meticulous about everything, oddly enough. I love cooking in the crockpot and feel that certain dishes come out fabulously like chicken cacciatore, clam chowder and beef stroganoff, plus the soups. I use McCormicks pulled pork seasoning packets to make pulled pork in it too, comes out great. Then I freeze some to add into chili.

Golden, it's not about "forgiveness " with my mother, but about a lifetime of trauma she's heaped on me due to mental illness. It takes a toll. And yes, dad should have put a stop to all the insanity years ago but never did......he bears responsibility here too. Nobody is ever blameless in such a situation except the children who suffer the fallout.

Oddly enough, my mother was hard on me but shrouded her words carefully so they sounded like praise. But her actions said otherwise. Like "gee you're smart but don't waste money going to college" and "gee you're not fat at 10 but please wear this girdle" and that kind of thing. Words have to be followed by the appropriate action or they're hollow lies. Mom was all about the outward appearance, keeping up with the Joneses, and never letting her slip show. Me not being genetically tied to her meant I didn't look like her or have her body type...which was an issue for Keeping Up Appearances lifestyle and further alienated me as an adoptee w no siblings.
(4)
Report

Popping in to say hello, Lea. Hope you’re feeling a bit better today.

Was reading about your dream. Dreams are fascinating, aren’t they?

A dream analyst would give up if they tried to analyze my dreams LOL 😆 I have some doozies!

It’s odd that some people don’t even remember their dreams. My husband doesn’t remember any of his dreams.

I love spicy pickles! My favorite are the homemade ones that I buy from the farmers market. If I purchase them in the store, I buy Wickles.

I cook soup all the time. I don’t use a crockpot for cooking soup. I cook it on the stove. I will have to try using a crockpot for it sometimes. I cook a few things in my crockpot. I like to cook a pork shoulder in it for BBQ pulled pork sandwiches.

We did buy an instant pot and I use it occasionally. Do y’all have one? Would Chuck use one of those? My husband is actually better at using the instant pot than I am!
(3)
Report

gg - Ending with a preposition used to bother me too, but I looked it up and apparently it is not considered the grammatical crime it once was. Language does change with time. 🙃
(5)
Report

(((((Lea))))) Those childhood hurts do hang on. My mother found my father at fault for just about everything and anything and she was nasty about. I was the other scape goat and my sister was the golden child. It's a pretty horrible family situation. Was your mother hard on you too - or just your father?

You don't forget. I don't see how you can, but speaking for myself, you can forgive and the memories are "softer". They don't hurt anymore. I forgave and forgave and forgave. The bible says to forgive not seven times, but seventy-seven times. I pondered this a lot when I was young in that dysfunctional conflicted household.

One day I counted how many times I had forgiven mother and I stopped when I reached seventy-seven (wasn't even supper time yet) and asked "What do I do now?" The abuse continued, obviously.

In time I came to realize that it wasn't me, it was her, and that she was mentally ill. Perhaps to some extent she couldn't help it - though I do believe that everyone has choices.

My answer was to protect myself - by distancing and detaching and continuing to forgive. My father could have made different choices too, which would have been better for us all. He bore some responsibility, it wasn't all mother.

All of this to say I believe healing is possible.

Father God, I pray for the removal of all toxic effects from Lea, from the very soles of her feet to the tips of the topmost hair on her head, that have accumulated over time due to everything from family hurts/dysfunction to the latest cancer and side effect treatments. Father remove all these ill effects that are plaguing our dear sister, restore to her the joy of her salvation, and to her health as you formed her in her mother's womb. I ask these thing in the mighty name of Jesus, to whom all knees shall bow. He is most beautiful, a rose of Sharon, a lily of the valleys, the hope of us all, the way, the truth and the life.
(6)
Report

Golden, I think I'll always have some pain and hurt in me over how my mother treated my father. Some things in life don't heal and are never forgotten, I guess. I was actually surprised that memory cropped up......in the middle of such a sweet dream. We had the pea soup last night after another half day of cooking, and it was perfect lol. Chucks off the job with cooking soup and meatloaf...2 meals he's blown twice now. But he stopped at Whole Foods this morning after birding to pick me up a quart of Bubbies pickles ....the spicy variety which I've never tried. So I'm excited to have REAL pickles in house now 😂🤣😃I like 60s temps too......its just odd for daytime temps in June. Nice not to need expensive A.C. though. Dd bought me a remote control Vornado fan last time I was in the hospital which we're using in the great room now, and it's perfect w/o the need for added A.C.

GG.....if you have Google Lens on your phone, take a photo of an item you'd like info on, in Google Lens, and let the app do the research for you. Or search out SOLD listings in eBay. Estate sales are fun and it's always great to go out with a friend who wants to learn the tricks of the trade. I taught my daughter in law and now her entire basement is filled with........LEGOS. Yep. Betcha thought I was gonna say Cool ANTIQUES or Vintage Beauties. Nope. Legos. She went crazy collecting Legos in all sizes and shapes and now has SO MANY it's insane. I know there's a lot of value there bc she has old pieces and discontinued hard to find lots.....but to me it's boring. Lol. I look for the oddities like vintage art supplies I pay $4 for that fetch $225. But hey, if DIL can make a killing on Legos, God bless her.
(4)
Report

Lea, I would love to have someone like you in my life to teach me the ropes of estate sales. I'd want to start with my own house first. I am sure I have things that I am overlooking the value of. (Hmmm, ended that sentence with a preposition, my grammar teaching Aunt G is rolling over in her grave now.) I don't want to own more stuff but I sure would love to be able to spot things and sell them for a profit. We drove past a "vintage" store this morning and I noticed something in their storefront that looked like something I once owned. Two plus two says that the person I gave it to sold it and now it is in the vintage store for even more money.
(3)
Report

Okay, I’m in for The Estate Sale Prayers!

I’m glad at least that the silly steroids have eased up on your emotions!

Enjoy that lovely night weather. That sure is something I miss about Buffalo, this time of year!

Hugs from FL!
(4)
Report

Good afternoon, Lea. Yes Jack the Monkey on your back!

Geaton - thx for the reminder of the Ancient Mariner. It's one I studied and I loved that poem.

Wow what a dream, Lea. It surely is symbolic of something good. When I was young I used to dream that I could fly. It was so real. I think it represented being free of the family dysfunction. Over the years I got freer and freer and dreamt it less and less. Yes, pray to get back to estate sales. I'm with you on that one. They were so good for you. I wonder if you still have some pain/hurt inside about your mother spewing venom at your father. I always think dreams have a reason. These toxic family members of ours do a big number on us and we need to heal from them. So glad the crying jags have dried up. That's a good sign in terms of less prednisone in your body.

Sorry about the pea soup. I know you were looking forward to it. He'll do better next time. R takes input well about many things but not about cooking.. He was convinced the frozen turkey would cook in 3 1/2 hours and I couldn't tell him different. I know my oven!!! If it had been my old stove it would have cooked in that time. It was a very fast oven. This stove has a slow oven So dd and family sat at the table while he discovered it was not done. We ate vegetables. I don't think he ever offered to cook another meal. lol and that's ok. Family stories! I did it once too to a friend years ago. Thought I had set up the oven right and discovered at meal time I hadn't. Ooops! 😋

For me 67 degrees is about right We still go down to about 50 (10C) at night.
(4)
Report

Geaton......I actually stopped for a moment before I posted about the albatross wondering if it was my back or my neck he was affixed to....😂🤣😁. My neck it is.....its the Jack that's on my back, I should've known!

Golden girl......last night I dreamt I was walking/ feeling normal again and driving my car! I also dreamt my mother was on the phone spewing venom about my father, so 1 out of 2 ain't bad, huh? 😂 I think I will pray to get back to estate sales again, why not? It's been a fun source of income and amusement for me for 18 years now. Amen. And I find myself generally in good spirits.....especially since I'm down to 30mgs of the poisonous prednisone and all those crying jags have dried up, TG.

Woke up to it being 67 degrees in the house in June! Good thing old Chef Chuck screwed up our pea soup yesterday and it won't be ready till tonight! He put TWO 48oz boxes of broth into the crock pot instead of one.....so it didn't cook properly and was way too watery. Chuck has a tendency to either cook something beautifully or horribly, nothing in between lol.
(6)
Report

LL, I'm going to go into Nerd Mode for a moment to point out that The Albatross is "around your neck" and not your back: "The phrase alludes to�Samuel Taylor Coleridge's poem 'The Rime of the Ancient Mariner,'�in which a sailor who shoots a friendly albatross is forced to wear its carcass around his neck as punishment." (Source: Dictionary.com) I don't think the Monkey would like to share your back with the Albatross...
(6)
Report

Good evening, Lea. Despite all, you sound in good spirits.

A blessing for tonight - Numbers 6:24-26

“The Lord bless you and keep you;
the Lord make his face shine on you
    and be gracious to you;
the Lord turn his face toward you
    and give you peace.

Maybe its time to pray that you can get out there to some estate sales again. Sounds like fun!

Those immunotherapy side effects are a b*itch.

It was thoughtful of your friend to send a gift card to that restaurant. Pea soup is awesome!!!

Have a good night!
(6)
Report

Rd...smashing find and profit! I'd only go treasure hunting w you if I DIDN'T need a caregiver. I'm waiting to be rid of this albatross on my back before I get back to junking. Fingers crossed. 😁

Hi Send 😁

Cx, ty for your continued prsyers
(6)
Report

Sending love and continued prayers for your healing, LL, here on Monday evening! 🩷
(6)
Report

Well just to break the cycle of non helpful PT suggestions: I think my best find was buying a George Jensen bracelet for $15.00 at a sale. I was buying other jewelry so it was thrown in for that price. It was badly tarnished and all I knew at first was that it was likely real silver. I was pleasantly surprised after cleaning it and finding the markings. I offered it to one of my daughters who said it wasn't her style. It ended up selling for $800.00 at an auction which I paid 30% to the dealer holding the sale. I got a kick out of telling my daughter about it. Love Hattie Carnegie. Hoping you get out there again. I so wish I was near you. I would be happy to be your caregiver on excursions.
(3)
Report

Good morning Lea!
(4)
Report

Ty Geaton. It gets exhausting trying to explain that I do not have BPPV etc. If I did, why would I or my doctors not realign my ear crystals and get rid of it? To live like this UNNECESSARILY is ludicrous.

Sp, hindsight is always 20:20 but if I knew then what I know now, I'd have only taken ONE immunotherapy treatment instead of two. I believe the first ipi/nivo treatment is what killed the cancer, and it was the second one that screwed up my CNS. I'm not going to address the "rehab" matter again, it's beating a dead horse. I DO hear a LOT about side effects from immunotherapy on the FB group I belong to. Stage 4 metastatic melanoma stories. Horrible stories there.......mind boggling. Not many escape the immunotherapy side effects, everyone gets SOMETHING they have to suffer with at some point, some permanently. Much worse than chemo bc the docs know how to treat chemo side effects, but immunotherapy is the great unknown. Ulcerative colitis is the big side effect, but there are TONS of other horrible ones that can permanently disable or kill you. Many people have had crainiotomy surgeries leaving them disabled (I'd draw the line there) and others have chosen so many treatments that they have no QOL at all. The truth with stage 4 melanoma is we're just buying TIME, not a cure. So for me, I realize that and won't take SO many treatments that I'll die from them vs the cancer. If I have to do clinical trials if the cancer returns, I'll think long and hard first.

Ty Ty......😁RD...ty. I wish we could get together to discuss fun things too. Like vintage jewelry and collecting junk. Sigh. It's been 5 months since I've even sorted thru any junk! I'm jonesing to do that. One of my estate sale owner friends sends me photos on my phone of Hattie Carnegie jewelry she finds in case I want to buy it. I want to find it myself! 😑

My bff sent us a gift card to a great restaurant so we ordered takeout last night. It was very nice. Pea soup aroma is now filling up the house as I type. As thunder pounds outside, yet again 🙄

Boy the new irritation on this site of lumping paragraphs together is FUN, huh?
(6)
Report

Lea, not much to say except: Hang in woman! I hope the dizzy lessens and you can have a good day.
(5)
Report

I am really sorry and didn't mean to suggest something that would be benign. Just hoping for better days for you. Wish we could get together and discuss vintage costume jewelry. I hope someone helps your situation or at least time does.
(4)
Report

To all who are making well-meaning suggestions to LL about her vertigo: PT will not help the type of vertigo she has, since PT is for BPPV and the movements are to help recalibrate one's equilibrium (due to the chrystals touching the hairs in the inner ear) and to get the chrystals to go back where they came from. Been there, done that for 20 years. LL's cns vertigo... just praying, waiting and encouraging is probably the most that can be done.
(4)
Report

Lea: You're welcome. I hope that you're fast asleep.No, I don't own any llamas. My love of them started in '81 on our honeymoon in Cape Cod, MA, where I saw my first one.❤
(5)
Report

Lea the whole thing sucks. Your only choice may be to try the vestibular rehabilitation therapy to see if it can help you mitigate some of this and regain at least a little more quality of life.

If you knew this would happen do you think you would have decided not to have the immunotherapy?

I've been reading up on it and it looks like it's not as benign a treatment as it seems.

I often wonder what's going to take me out and how much risk I am willing to take to keep living if I get cancer. I know my husband because his body is so sensitive wouldn't be able to do the treatments. Even chemo can cause this stuff.

You never hear anyone talk about how their cancer was cured but the side effects messed up their life and they regret doing the treatments.
(3)
Report

RD: bc I'm not having BPPV where traditional Epley Maneuvers involving realigning ear crystals would help! You likely know of vertigo cases where traditional pt helped, not cns cases. No vertigo solutions that HAVE BEEN TRIED ALREADY HAVE WORKED. This is a toxic reaction to a cancer immunotherapy treatment I'm experiencing......mimicking vertigo but not vertigo. If I don't have ear crystals out of whack, traditional BPPV exercises are not useful, and "rehab" is intended to help me learn how to stay safe at home. The doc at UC Health recommended it, I had an evaluation by pt for rehab, who determined I did not need it bc I was safe enough, and that's the story. Me hanging over my bed isn't going to knock this out of my body, or restore my hearing or my eye issues, nor is doing mirror exercises like I dealt with for years with my mother. Off to the ENT I'd schlep her and they'd do this and that, and she'd sleep in her recliner for a night or 2, take her Meclizine, and boom, she was fine. I had teams of specialists in my hospital room for 5 days, testing and retesting me 5x over for everything. No stone was left unturned at hospital #2. Had there been an easy fix, they'd have found it. It's what they DO. This issue is not JUST dizziness either......its multifaceted in nature and an attack on my central nervous system.
(3)
Report

Lea,

Just read your post to Golden about how you are feeling worse now than in the beginning of this mess.

My MIL would often say that she felt fine when she was diagnosed with her Non Hodgkin’s Lymphoma. In fact, she was traveling, when she discovered her lump while showering. She said that she never felt better in her life.

Yes, the cancer treatment knocked her for a loop! After she went into remission and was dealing with withdrawal symptoms, she said that was when she felt absolutely horrible.

I feel for you and hope that you start to feel better soon. It takes time and while I know that you are extremely grateful for being cancer free, I bet you are so sick of feeling crappy and looking forward to a normal day. It doesn’t have to be a great day, just a nice normal day.
(5)
Report

I am so sorry for all you are going through. Although the vertigo was not as intense I do know of situations where PT did help which involved head movements. I am sure you know all about this but just wondering why certain PT groups ruled out being of any help at all to you. I am sure it must be to the severity but it seems worth giving it a try. Sorry if this seems tiresome. I can only imagine how you feel and the fact that you are able to communicate here so well is impressive.
(2)
Report

Barb...I read that article a while ago. It says not much, in reality, aside from treating the hearing issues which aren't plaguing me as much as the vertigo issues which they SAY resolve (most often) with steroids and vestibular therapy TO REDUCE FALLS which means teaching me to use a walker and live with it. I also likely have uveitis in my eyes along w the rest of this chit which was not addressed in terms of curing. The jury is out on several of these rare cases and steroids were helpful in several more. So far so bad for me w the steroids but again, I'm not off of them yet. My hearing has not improved, the tinnitus is even louder than ever at certain times but I've learned to tune it out mostly. What is odd to me is that the main focus of what these articles talk about is hearing loss. A person can live if theyre deaf, even.....but a person cannot live any semblance of a normal life with THIS LEVEL OF DIZZINESS which is all consuming and forcing me to live in a recliner or bed w my head supported, or in a wheelchair while out in public. I'd prefer to be stone cold deaf, tbh.

According to the chart, 2 ipi/Nivo (That was my immunotherapy treatments) users were hit with audiovestibular toxicity reactions., both resolved with short term prednisone, unlike me. One had a different treatment Solumedrol, 1 mg/kg x3 days (IV) along with the prednisone which I did not. 1 guy of the 4 is the same and the other dead of the disease. According to my docs, prednisolone/solumedrol is IV prednisone and no difference .... I did ask about that when I first read of it being used as a tx.


I'll check out ENT PT at some point, who's already said they can't help me...2 different groups....but I plan to ask if they'll try. What have I got to lose at this point? I suppose they can make me worse....idk.
(6)
Report

Lea, interesting article I found--

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9138419/

Apparently rehab exercises, etc. CAN be helpful.
(((Hugs)))
(2)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter