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Oldage, this is an ongoing discussion I started on 2/1/23 that hasn't stopped ....We are talking about my cancer journey. My 2nd immunotherapy treatment killed off the cancer but caused a toxic reaction in my central nervous system in the form of extreme dizziness and tinnitus for the past 13 weeks. My immunotherapy is over bc my body cannot tolerate it, obviously. That's the short version of a long story.

Thank you for your kind words which I appreciate.
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Golden, you definitely earned a housekeeper! Even though they never do things to our satisfaction, it's done w/o our help and that's the important part for me. After they leave, I do an inspection to see what was missed, and take care of those issues myself. Today it was the dining room table ....the glass top and wood bottom was missed entirely even with 6 eyes at work. So my long handled Swiffer did the wood and my other 2 cloths did the glass. I have to be more active bc my hip is KILLING me lately and I'm not in any shape for replacement at this point. So more activity should help, I hope.

I don't envy you moving bc it's such a huge job. Once you're on the other side of it and settled in the condo, I'm sure you'll be happy and more relaxed in general. Don't overdo it.....so not worth the suffering. Does R have a nebulizer for his asthma and wheezing w the bronchitis? There was a time I had to neb 3x a night! Asthma can get out of hand very fast, so it's always good to have emergency supplies (Like a nebulizer) on hand if needed. I HATE asthma. I hope his bronchitis resolves w/o further suffering.
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Sending prayers 🙏
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LL, please read this:

https://www.soundrelief.com/hyperacusis/
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Thx Lea. I don't mind housework, but it would be nice to have some energy to do other things (and also have a cleaner house, hopefully)

I hear you about things left undone. Have you thought of a check list for them. I am really into lists. I am amazed with your health issues that you can even dust the dining room table!

Being more active helps. Good for you!!! I think you can retrain your brain in many ways. Retrain it, and calm it down!!!

Wow - adjusting to the dizziness must be a big challenge! But if anyone can do it, you can.

Thx re R. Don't know what he has for his bronchitis. I'll find out later. He's not good with that kind of stuff (describing it to me); It's working but he still is having coughing spells.

Barb - thx for that link. I know my issues are CFS/FM related but new information is always good. From it I found a You Tube video of soothing sounds that I like. Rain, thunder and a crackling fire!!! Brings back wonderful memories.

Have a good day, Lea - as good as you can. you are a survivor!!!

Prayers always and ongoing.

“There is a time for everything, and a season for every activity under the heavens …” Ecclesiastes 3:1

We may not like all the seasons in our lives, but God has a plan and a purpose in them.
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Bookmarked
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I speak the name of Jesus over you
In your hurting, in your sorrow
I will ask my God to move
I speak His name 'cause it's what He's asked me to do
In His promise, I will seek Him, Jesus
And pray to Him for you
I pray for your healing
That circumstances would change
I pray that the fear inside would flee in Jesus name
I pray that a breakthrough would happen today
I pray miracles over your life in Jesus name, in Jesus name
I speak the name of all authority
Declaring blessings, every promise
He is faithful to keep
I speak the name no grave could ever hold
He is greater, He is stronger
He's the God of possible
I pray for your healing

I pray miracles over your life in Jesus name
In Jesus name
In the mighty name of Jesus, all things are possible
I pray for your healing
I pray that you can receive it
In Jesus name.

Source: Musixmatch/Edit
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Love that song Sendhelp!
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@Barb........"Some people even find the sound of their own voice or their spouse’s voice intolerably loud".......uh, yeah. I often say I can't stand the sound of my own voice. And Chucks booming voice, fuggedaboutit 🙄. I'm sure this type of hypercusis is vestibular, to go along with the REST of the audio-vestibular nightmare that's been plaguing me. While I've had this misophonia thing going on since I was a teen, things have worsened lately w the onset of my vestibular reaction.

And I'm also not surprised to see there's no cure but "counseling" meaning it's the Suck It Up And Learn to Live With It Buttercup Program I've become familiar with lately. Ugh. Again, there seems to be more I Don't Know answers in the medical field these days than anything else, especially when it pertains to ME.

I'm off to take my lower dose prednisone now and pray for a milder reaction. And no need for my walker. It's a rainy day today which normally makes me even dizzier....but not today. So I'm calling for a GOOD DAY TODAY! 😁

Golden, part of my Return to Normal program is picking up a Swiffer...and a rag to clean a little. Telling my brain I'M NOT GONNA TAKE THIS CHIT. I'M GONNA LIVE MY LIFE NO MATTER WHAT MY BODY THROWS AT ME. Seems like when I fight is when I start to turn a corner. That's my prayer. A nebulizer is a machine you breathe into with a hose you put in your mouth. The meds go into a chamber, water in the tank, and a breathing treatment is administered thru the machine. An EXCELLENT way to get immediate relief from lung issues.

Send, ty for the song!
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Golden, you said,
“Plans -what are plans? lol. Day by day I go with what I can do. These days I have to be careful. It doesn't take much but the stress of normal life to set off the fatigue, sore throats, muscle pain, brain fog etc.”

This. Is. Me!

I’ve never seen it written out like that! I haven’t joined any groups for FM, cause I don’t even want to KNOW how things could end up.

I can do ONE thing a day, outside of the house, and I am done. Afternoon? Nope! I’m out. 🤦🏻‍♀️

Anyway, nice to read about someone who GETS it.

LL-my misophonia makes my family crazy. Too bad. It’s either “Close your mouth when you eat!” and “Use headphones for your tablet, if you already have the tv on.”, or this Mama will run screaming from the house! 🤪

I’m still praying for you, girl!
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Cx......I too was done after doing one thing per day for about a year or so before my cancer dx. I'd wait till 2 pm to get up the strength to drive to the store! I'm the later-in-the-day person, never the morning person. I attributed it (now) to sheer exhaustion from the cancer which I was unaware of. Now I'm not so sure, given other factors that could've been at play too. I do know that I had to go lay down in bed after we got home from estate sales......which is not that strenuous an activity! 😑 I'm like you with the support groups.....not sure I want to know too much info. The stage 4 melanoma group I have to read in SMALL blips bc it's ow too depressing. I need to stay focused on my journey only. Not on what may lie ahead. Same for a fm group, I'd think.

The misophonia thing people seem to find funny or stupid or ridiculous, not realizing the level of aggravation it causes us. "As if" we wouldn't turn the damn thing OFF if it was within our power to????? Oh yah baby, I just LOVE feeling outraged when hearing you chew, what FUN! 🙄 Its way more than a "pet peeve" when it triggers a physical reaction in ones body to hear certain sounds! So we can be laughed at or "driven crazy" by our loved ones till the cows come home but what I wish is FOR THEM to be saddled with this chit for ONE WEEKEND and we'll see who's annoyed or laughing or being driven crazy THEN!
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Before COVID DH and I would go to the movies regularly. I always felt they were a little too loud but could deal with it. Because of DHs hearing, we would pick action movies. This one was so loud when it came to the police chases and gun fights that I had to leave the theater. It was actually making me feel sick. I looked it up and overly loud noises can make you physically sick. I watch no TV till late in the afternoon. Do not like background noise when I am trying to think. My DH can't believe I have my TV turned down so low. I am very sensitive to sound. Love peace and quiet.
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Hi LL! Still praying for the dizziness to be healed completely and for peace that transcends understanding. xoxo
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Lea, You’re so right. The only people who can truly understand how you are feeling are people who have been through this.

I won’t try to pretend that I know how you feel because I haven’t experienced any of what you are going through.

I do have empathy for you though and I hope that you will start to feel better very, very soon.

I also know that you are a no nonsense woman who wouldn’t be complaining if you weren’t struggling with this misophonia.

Anyone who truly knows you will not doubt your word, or think the situation is ridiculous or funny.

Sending a bazillion hugs your way!
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Thanks Geaton and NHWM. Today I'm in bed after being gobsmacked with the 5mg decrease in prednisone yesterday *which didn't hit hard till today* I'm horribly dizzy and having other side effects making it necessary to lie down flat 😏. Which makes me question WHY I'm not just doing the 10mg decrease and getting this chit show over with faster. I'm so sick of all this I could just scream.
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Lea,

You have had more than your share to contend with. You have to be completely drained from this ongoing crap.

Sending many hugs your way and extra prayers will be sent up to God asking for His mercy to grant you some much needed relief.

I wish I knew something that I could say that would comfort you but I know that there aren’t any words to make your situation any better.
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((((Lea)))
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Lea,
Screaming and tears are healing, and so very understandable.
Do what you need to do to get through this amazingly difficult time.

Sending support your way Lea.
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(((((hugs)))) Lea - go with what makes sense to you.

"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." Hebrews 4:16 

Father God, I pray for mercy and grace for Lea in her times of trial. Touch her and heal her, as only you can. I ask this is Jesus name.
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Prayers to our Heavenly Father - please lift Lea in your comforting arms and take this dizziness away. This I pray in Jesus's name.
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Praying for a better day today for you Lealonnie, and that God will give you His peace and rest and that the dizziness you're feeling will go away once and for all.
Please Jesus, your precious servant Lealonnie has had enough. Please remove all of these negative side effects sooner than later. Thank you Jesus.
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Good Monday! Hope that the dizziness has diminished today and that your day will be better!
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This here is EXACTLY how I feel. You put it in such better words than I ever could!
"The misophonia thing people seem to find funny or stupid or ridiculous, not realizing the level of aggravation it causes us. "As if" we wouldn't turn the damn thing OFF if it was within our power to????? Oh yah baby, I just LOVE feeling outraged when hearing you chew, what FUN! 🙄 Its way more than a "pet peeve" when it triggers a physical reaction in ones body to hear certain sounds! So we can be laughed at or "driven crazy" by our loved ones till the cows come home but what I wish is FOR THEM to be saddled with this chit for ONE WEEKEND and we'll see who's annoyed or laughing or being driven crazy THEN!"

And, girl, I am praying for those dang steroids to give you a break.

You are treasured here. Thank you for letting us share this journey with you.
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Prayers are being sent😌

my dad used to reach out to me a lot!!!

maybe I was too close to mom… I don’t hear her much..

she was talking to me when she was dying.. I went home for a bit watered the lemon tree she gave me years ago..
I answered her out loud.. ok mom, let me finish watering .. I’ll be right there.
my brother was texting me. My cell was in my car.. I got th her in 2 minutes..
the nurse was logging in the time of death as I walked in..

i know she left when she was “talking” to me…
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Thanks for the prayers Mayday 😁Nice to see you!

Cxmoody, who can better understand these afflictions better than those of us who are afflicted with the damn things, eh?

Just sitting around on my recliner today feeling lousy, basically. But not in bed anyway. Yahoo. 😊
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((((hugs)))) and prayers, Lea. All this other stuff just adds to the load you are carrying. I'm sorry. It's horrible not being believed when you are suffering.

cx - you are the one with paresthesia -right? A lot of this is typical cfs/fm. They don't know why or how or what to do about it.

I've had it for 30+ years and you don't necessarily get worse. I'm better than was when I first got it. Right now I've had to take a bit of a break as it's flaring up but still not as bad as it was at the start.


Lea. I expect some of what you are going through is made worse by fm. When you mention having to rest after an outing. Yes!!! If you have fm you already had brain inflammation going into the treatment.

Anyway, just to say all the golden girls and especially you, Lea, are on my mind and in my heart even when I am not posting. (((((hugs))))) and some glitter!
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Found a pristine dime in the cracks of a NYC sidewalk on our way to see New York New York which coststars a former dressing room mate of my husband's from 2000 when they were in that revival of Music Man. So there you were with me. Now on our long drive home. I know why did we drive and probably the last time we make this trip by car.

Friends of ours do it from Florida to your neck of the woods where their daughter lives. They are more organized with getting off in the morning. Just had my Dairy Queen Fix. Anyway hope you feel some better days ahead.
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Lea: Hugs to you tonight.💜
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Hi Lea, My prayers continue. Hope today is a better day.
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