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Speaking of Powerade is this true or false? I had Gatorade once and it tasted salty (it was the fruit punch kind). Is this true with these types of drinks? And this wasnt the sugar free kind.

When we see a loved one suffering it's natural to want to try and fix it (that's where the have you tried this is or don't do that advice comes in) when all said loved one needs is someone to just listen and comeserate with.
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Nope, no benefits Golden. Horrible dreams lately too, which I can only attribute to the taper. Chins and huge face still present and accounted for.

Geaton, my plan is to wean off prednisone 100%, even if it kills me. Literally. Btw, I am about 4 weeks away from being totally off, 5 weeks max. Not so close at all. Seems like a very long way off, actually.

DD is coming by later to say Happy Fathers Day to Chuck and no doubt tell me what I'm Doing Wrong with my recovery, which has nothing to DO with what I'm Doing. Sigh. It's always fun to hear her tell me to drink Powerade w/o sugar oops I mean WITH sugar or to take Unisom or Benadryl to sleep or for my eye issues, or that the NEXT IVIG will work, regardless that NOTHING HAS WORKED to relieve my symptoms over the past 15+ weeks, including but not limited to, the last 2 amazing IVIG infusions at $20k apiece.

$647,000.00 in treatments so far but I'm cancer free for the moment and have had a successful spinal repair surgery, so that's something. The vast majority of that expense has gone towards fixing this toxic reaction my body is having to immunotherapy treatment 2 and has been unsuccessful. 😑

I hope you all have a nice Sunday and a Happy Fathers Day to those who are celebrating
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LL, if I were in your situation I'd taper completely off and then give your body "time" to readjust and then I would feel like I could make a decision that I wouldn't regret (as awful as that journey is). You're "close" to being 0 of prednisone, so endure it as best you can. Says easy but does hard, I know. Thinking of you every day and praying for your endurance in this marathon with the moving finish line. xoxo
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(((((Lea))))) as you say only God knows what is happening. I totally understand that you want to stop poisoning your body. It's so hard when you don't know what is causing what, you just know that your body is going through a very, very, hard time and this substance is part of the equation. I am also hearing what your dd is saying. I don't suppose anyone really knows the answer.

Lord, please give Lea wisdom as she deals with her condition, Help her to make the right decisions regarding the prednisone, and the tapering. Lord, you know the path you have planned for. Show her the way - step by step, We give you all the glory for her NED. in Jesus mighty name.

Are you noticing any benefits from the lower doses? - losing a bit of an extra chin maybe?

Your courage and honesty are ongoing and amazing.

Amen and Amen to the prayers of others.
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So sorry Lea. It truly upsets me to know you are suffering so. I don't understand why God has not healed you completely yet and even if I did understand I would probably argue "But why not now God?" Maybe you have asked God already why not now? Pray hard for that answer then maybe the waiting won't seem so bad.

For me when I'm suffering I don't have the patience of Job. I admire you Lea and that you still come on here everyday reporting back to us all.

Please God, give Lea some relief and in the meantime while she waits give her peace to withstand the waiting. In Jesus name, Amen.
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I’m so sorry, Lea. Your situation sounds truly awful. I hope with all my heart that your dizziness will start to ease up soon. Will continue to pray for you and Chuck.
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Hi everyone. I did go down to 25mgs of prednisone today, as scheduled, come what may. Last night my heart rate was up over 110 bpm so I took a Xanax to calm down. I don't feel worse today, but the dizziness is at a 9 out 10 so I'm vegged out on my recliner all day, using the walker to get around. God knows WHAT'S happening .....if this is withdrawal or a reaction to the dramatically lowered steroid dose in my body now? It's just a lot to process and deal with, for Chuck too who's seriously worried and stressed out. The crying jags have ramped up again which makes me think steroid withdrawal.......so? Your guess is as good as mine. At this point, who cares just STOP ALREADY 😑

Thank you all for the prayers, they mean a lot. And cxmoody and RD, ty.

Golden, if the prednisone did me any good and I can't get off of it, then what "good" did it do, ultimately, since it's causing so much damage to my body? Can't stay on this chit forever. Truth I've been thinking about myself lately. DD is saying TRY TAKING MORE and I'm LIKE WHAT FOR??? I'm either getting off this chit or I'm not. I have to see what it feels like to STOP POISONING MY BODY. If I wind up dead or back in the hospital as a result, so be it. If I have a heart attack, then it was my day to die. Fate and all that. At this point, I'm not sure it matters.
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I always breathe a sigh of relief when I sign on, and you’ve just answered a question above!

Okay, I might just even get a little teary, sometimes!

☀️
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Bmark
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Good Morning Lealonnie,
I just hate that you're having so many issues with the dizziness and weaning off of the prednisone. We all want you to be able to enjoy this gift of a second chance that you've been given.
The Bible teaches that we have great authority over all things and that we will do even greater things than Jesus did, so in the mighty name of Jesus and the God of the universe, I rebuke your dizziness and any lingering side effects that are stopping you from living and enjoying your best life, and claim that by Jesus' stripes you are healed completely. Thank you Jesus!
And all Gods people said Amen and Amen(so be it)!
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Good morning, Lea. Hope today is better. I guess it is good to know that the prednisone, for all the trouble it is causing you, has done you some good. Prayers continue and sending you some glitter.

"I have a magpie mind. I like anything that glitters."
-Roy Thomson, 'First Baron Of Thomson Of Fleet'.
"I am never afraid of using bold colours or glitter or intense lipstick."
-Charlotte Casiraghi.
"I have been really inspired by Paris Hilton, small dogs, and a glitter, luxe lifestyle."
-Charlie XCX.
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Dear Lea: I am praying you will feel better. ❤
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A big amen to cxmoody's prayer, Father God we pray for your mercy to fall upon Lea like rain on a parched desert. We thank you for helping her as she goes through this and for easing her suffering, in Jesus name.
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Lea, hoping for days that have no spinning
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Cxmoody,

Lovely prayer. I will join you in saying, Amen!
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Dear Lord,
We come together this Friday night, on behalf of our precious friend.
We are so thankful that she is still with us.
Your word says in Genesis 16 that You are The God Who Sees. We know that you see her suffering. You spared her life. Now, we ask you to let her PARTICIPATE in life, as well.
Calm her body, please, Lord, and give her relief from the dizziness. Please hear our prayer.
Amen.
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Dear Lea, so sorry that you are feeling so awful. Hoping and praying for real healing and real answers soon. (((Hugs)))).
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Hi ladies. I've been in bed all day......tapering down to 30 mg of prednisone this week has been brutal and caught up with me big time today. Can't walk for a 9 on the dizzy scale. Just a very bad day like in the very beginning of this chaos back in Feb. I'm having intense body twitches when falling asleep also and the brain zaps are coming back but milder. I guess the steroids were warding off worse symptoms after all. I feel like I'll be bedbound here shortly once I'm down a bit more......tomorrow I'm scheduled to taper to 25 mgs. God help me.

Just checking in to say I'm alive.
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Yes Golden, people would believe our stories, no doubt. There seem to be more of OUR stories of dysfunctional upbringings than rainbow and puppy dog ones, so that's the sad truth.
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Lea - walking on eggshells - oh yes! Those scary episodes that riddled our childhoods would make a book, but would people believe it? lol Glad being adopted helped in your childhood situation. I can see why.

The gaslighting and stories! Oh yes, to them too!

Prayers for your general health and well being so you can go to estate sales!!!!
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Overwhelmed, Awww, thanks! So sweet of you to say that you also relate to Lea’s stories about dimes.

Lea deserves every dime that has been produced to spend on any pleasurable thing that she wants!

I love hearing about the dimes and I love hearing about her precious grandson!

I was going to switch it back to my purple orchids from our botanical garden or a photo of my sweet granddog.

I decided to keep the dime avatar for now to remind me to pray for Lea’s nausea to be gone.
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Need - love your avatar! I just started scrolling, saw your new logo and started smiling. Had to come to Lea's page pronto! Most on agingcare probably don't have the faintest idea of the importance of the dime. Every single time I see a dime now, I think of Lealonnie!

I'm reading your discussion of whacked moms and knowing I could contribute - but, for my mental health, I just can't go there! 🤪 You are not alone, unfortunately.

Think about you often Lea. Prayers every day❤️
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Lea, I have actually been The Mint in Denver, Colorado. I wish that I could give you all of the dimes ever produced so that you could go shopping at your estate sales. I know that you would find lots of bargains! 😊
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Lea,

I was embarrassed by my first dime photo. LOL 😆

I took a better picture.

If your dizziness continues you will be a contender for the Guinness Book of World Records for being dizzy the longest of anyone!
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Nhwm........ha! I was wondering what your new avatar was.....a DIME! LOL! Thank you, love it! 😘😍😗

Geaton, hothouse, Golden, passive-aggressive people are the worst, omg. I used to keep a marble book of my mothers outrageous shenanigans so when the men in the white coats came to take her away, I'd give them the book so they'd have notes to go by for treatment. True story. Except nobody ever came to take her away and the nightmare continued to unfold at home. Where she'd threaten to kill herself by driving off in the car burning rubber, leaving me at 5 years old alone at home w grandma, crying and shaking w fear. All unhinged crazy behaviors no child should ever be exposed to. All based on her "nerves" over having her mother living w us. The walking on eggshells was a real necessity bc the rages she'd fly into were very real if I set her off! Her rages were teeth baring and very ugly things. Once she threw all the pots and pans down the basement stairs and hammered them up into blobs! 😑

I wasn't allowed any privacy either....not allowed to close my own bedroom door even! Everything was subject to search bc I was scrutinized and not trusted. I was accused of doing things I didn't even COMPREHEND at a young age! Being adopted helped me....step AWAY from the genetic component, at least. To tell myself I was not "related" to these people by blood. That I would not turn out like mom, etc. That maybe I came from great stock. When I found my biological family and they turned out to be dumpster divers from the Jerry Springer show, I nearly had a nervous breakdown. Sigh. While I was unlucky to be adopted into the family I went into, I would've been unluckier to have been kept by my biological mother who was even more unhinged than my adoptive mother, I think. She died at 57, before I got to meet her. Which may or may not have been a good thing, Idk. I do know you can't make this chit up. I am 1 of 7 children she had w at least 3 men. The result of an affair she had while her dh was in jail 🙄.

The dizzy days are nothing new, ladies. Been going on for what seems like forever now. 15 weeks today. The side effects from poisonous immunotherapy treatments are numerous and widespread, which I didn't realize when I first started. I had no other choice though, so here I am. Dealing w the fallout, one day at a time. Ty for all the love and support.
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ah, passive-aggressive people... my Swedish-American husband is the poster child for that disorder. In our house we often have to force him to clarify himself by asking: "Is that a question or a statement?" He'll do things like point out the sticky spot on the kitchen floor. Just point it out. Then I have to clarify and ask him if he's going to stand around and ponder it, or if he's waiting for me to wipe it up, *or* if he's actually going to wipe it up himself since he's literally standing next to the paper towels. ugh. LL, thinking of you this morning, as always. Praying for your healing and peace!
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Hi Lea, I’m still praying for your dizziness to go away.

The description you gave of your relationship with your mother mirror mine very closely. The silent treatments that were days long were particularly awful. Given the choice I preferred the hair pulling and beatings, at least it was over quickly. . And I remember how my sisters and I walked on egg shells for fear of setting her off, that was memorable too.

She treated my father the same way and for the life of me I could never figure out why he stayed in the marriage. Most men would not have. I’m glad he’s now in a nursing home and doesn’t have to listen to her tirades anymore. At least he has some peace in his final days..

I was lucky, I built a good life for myself and have a good marriage, wonderful daughter and awesome grandkids. I tried very hard to be aware of my mothers behaviors and not fall into her abusive patterns. Was always afraid Id be just like her.
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Lea, my mother was mentally ill too. She had Borderline Personality Disorder. She wasn't passive aggressive but the angry version of this illness. She raged and raged and raged. With mother it wasn't silent treatment it was venom spewed out at you, following you around the house, into your room - you had no privacy and couldn't get away. I can identify with the jabs that at first appear like a compliment. i got lots of those too. A lifetime of that does take it's toll.

I agree they can't have normal relationships. They are not capable. As a child, I don't remember a hug or a kind word from my mother.

They chew you up and spit you out, then blame you when they step in it. They are never wrong, it's always someone else's fault.

For me, I had to forgive regularly for my own sake.

It's funny you mention "Keeping up Appearances". My kids always said mother was like Hyacinthe. It was all about how things looked and what people thought of her.

I am so sorry that you went through all that. As an adoptee you must have wished they hadn't and wondered what life would have been like if you hadn't been given up for adoption or if you had been adopted by another family. (((((hugs))))

I have a sibling - she has similar traits to my mother and knew how to set mother off on me so having a sibling in my case made things worse.

So sorry you are having very bad dizzy days. Keeping praying for improvement and for you to have some "normal" life and be able to get back to your estate sales and buy some glitter!!! ✨🎇✨
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Lea: I am so sorry to read that today you had a bad day with dizziness.

Dear Heavenly Father, please lift this dizziness from Lea. Thank you, God. Amen.
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Lea, The only way I could think of sending you a dime was to take a picture of a dime on my phone.

I think of you every time I see a dime and wanted to send you a dime all the way from New Orleans!

I know that the most special dimes are sent from your dad in heaven but I hope that this one might bring a smile to your face.

Hoping all of your dizziness goes away very soon and you feel like yourself again. Sending hugs and love your way!

After you see it, I will change my avatar. I’m afraid that my photo of the dime isn’t the best! LOL 😆

Maybe another poster will take a better looking photo of a dime and send it to you.

We could flood you with dimes! 😊
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