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Lea: To say 'good luck' tomorrow at UC Health seems trite, but it is heartfelt. Hugs and prayers, dear lady.
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Scripture du jour: "This too shall pass." We've all heard it or say it ourselves. This saying is not found in scripture but is commonly mistaken for scripture because it is often attributed to "an Eastern monarch" � often to King Solomon � but no one knows for certain. "The fable retold by English poet Edward FitzGerald can be traced to the first half of the 19th century, appearing in American papers by at least as early as 1839.�It usually involved a nameless "Eastern monarch". Its origin has been traced to the works of�Persian�Sufi poets, such as�Rumi,�Sanai�and�Attar of Nishapur. Attar records the fable of a powerful king who asks assembled wise men to create a ring that will make him happy when he is sad. After deliberation the sages hand him a simple ring with the Persian words "This too shall pass" etched on it, which has the desired effect. This story also appears in the Jewish folklore.�Many versions of the story have been recorded by the Israel Folklore Archive at the�University of Haifa.�Jewish folklore�often casts�Solomon�as either the king humbled by the adage, or as the one who delivers it to another. In some versions the phrase is simplified even further, appearing as an�acronym, only the�Hebrew letters�gimel,�zayin, and�yodh, which begin the words "Gam zeh ya'avor" (Hebrew:�???? ??? ????????,�gam zeh yaavor), "this too shall pass." Source: https://en.wikipedia.org/wiki/This_too_shall_pass LL, we are praying for the troublesome effects of the prednisone withdrawal to pass quickly and stay away completely.
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Lealonnie1: I will re-word my apology to ask forgiveness for offending you by my failed attempt at a return joke and writing a post which gave you the impression I thought you were silly. I did not think this and that was not my intent.

A portion of my Sunday post has disappeared. In it I said the ONLY Higher Power who can heal miraculously is God who created the universe along with all mankind, and it is to Him alone who who I offer sincere prayers on your behalf. I will continue to do so without posting further.

May the Lord's blessings be upon you to bring peace, health, wholeness, healing and eradication of all ailments, afflictions, pain and distress of body and soul, In the mighty name of Jesus I pray, Amen.
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Lealonnie1, I will re-word my apology to ask forgiveness for my failed attempt at making a return joke along with giving you the impression I thought you were silly. I did not think this and a post to upset you was never my intent.

A portion of my Sunday a.m. post has disappeared. In it I said the ONLY Higher Power who provides complete healing is God, Creator of the universe and all mankind, and it is to Him alone who I offer sincere prayers on your behalf. I will continue to do so without posting further.

May the Lord grant you peace, health, wholeness, healing and eradication of all pain, suffering, illness and distress of body and soul, In the mighty name of Jesus, I pray. Amen
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❤️ hugggg. wishing you lots of luck with the doctor!!
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Hi Lea - our "forum family" army is all with you in spirit today - and all days - sending immense prayers for healing and great hope! I hope you can feel all of the love!!

Always wishing you great strength and very positive results today!!
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Good morning, Lea. Rejoicing for you.

The scripture below is to give thanks IN all things, not FOR all things. I have found it a very powerful way to pray. And while giving thanks IN whatever storm I am in I also look for small or big things to give thanks FOR - even a blue sky, or a small flower, or my next breath...

Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus. 1 Thessalonians 5:16-18

With you in spirit and (((((((hugs))))))
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Pecan, what is "the right way" to do prednisone? There isn't one. It's given IV only under certain circumstances which weren't my circumstances, and orally otherwise. I've had many runs on this drug in my life, all unpleasant and vicious to withdraw from. Which is why the adrenal glands get depleted after long term use, and they must be discontinued. All cancer treatments stink. They all have bad side effects including death. 90% of people who have toxic reactions to immunotherapy are put on oral steroids and then have this scenario to contend with. #Fact.

"This too shall pass"......lets hope that's true. I'm hopeful to have this miserable run w vestibular/cns chaos pass wi the next 4 weeks or so. That is my prayer anyway, coming up on the 8 week mark.

Ty hope and bundle. Llama, nothing you say to me sounds trite, but loving and much appreciated. 😍

Golden, I hear you. Some days we have to rejoice in very small things or get lost in the weeds of the disaster du jour.

Prepping to shower now. Never did I think a shower would be THIS much of a chit show! I'm ready to sleep for hours afterward, literally. I'm also feeling extreme fatigue the past 2 days which is actually a GOOD thing after being so Super-charged and unable to sleep at ALL the past 5 weeks. It feels heavenly TO sleep and fall back to sleep at 4am when normally I'd have been up for the day.

The withdrawal symptoms have eased up a bit yesterday, thank God. Thurs I go down from 70 to 60mg for a week.

I'll be back later to update after the UC Health appointment. We're going
to see my 6 yo grandson afterward who lives 1 mile away from the Anchutz campus. That's the plan, anyway. Unless I'm falling apart even more than usual or having some horrible crying jag or or or...😂🤣😁
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Looking forward to hearing about your update and of course, your visit to see your grandson. 😄
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Uc Health oncologist is admitting me to the hospital for a few days tomorrow. I'll see their neurologist and get an ivig plasma treatment over a few day period in an effort to calm down my immune system and get my central nervous system working again. People have had good results with this who suffer from dizzy/vertigo. They also have 2 clinical trials in mind for me when tx is needed again. Meanwhile I have developed a large lump under my left armpit. May not be cancer related, we'll see with a CT scan. They HAVE SEEN THIS TOXIC REACTION BEFORE thank God, and also have a blood test to tell them which treatments work best for my DNA.

IIn the car now. Feeling hopeful but leery at the same time. Dr M is great, I like her a lot.

I'll check in later
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Thank you for your update Lea.
It is good you found a doctor who will do the right thing for you.
Be encouraged!
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What great news, Lea!!
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My husband has had multiple IVIG treatments to combat his autoimmune disorder (CIDP). While it hasn't "cured" his autoimmune, it has slowed down the progression to nearly nothing. His neurologist says the only "negative" with an IVIG treatment is the price - which for my husband was $20,000 per infusion (1 infusion per day over a 4-day period). Thankfully, insurance covered the whole thing, otherwise he might very well have been in a wheelchair by now.

He also said he felt a difference almost immediately after the first infusion, and he always felt better after each subsequent infusion.

He has had no bad side effects from the infusions whatsoever. And in the course of the many years of seeing this neurologist he's had about 40 treatments in total, but his autoimmune is very aggressive. The neurologist originally told him most of his patients undergoing IVIG see vast improvement after only 3-4 infusions. But he hasn't had to have a treatment in about 3 years, and he's still considered "stable".

I hope it gives you great results like it has my husband, Lea! They will probably infuse it very, very slowly, otherwise it can give you a massive headache, which is why I imagine they are doing it while you are in the hospital.

Good luck!
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Nge...... like music to my ears what's happened with dh and the IVIG. Yes, they are infusing VERRRY slowly for the reasons you've said. Holy cow to the price, ridiculous. Kaiser is agreeable to this so let's hope there's no snafus.

The oncologist says what you did.... good results fairly soon but I may have to keep up with the ivs monthly for awhile.
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Lea,

As always, I am hoping for the very best outcome for you.

Sending all my love to you.
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Sorry you have to head to the hospital tomorrow, but grateful to hear that the infusions should help! And, what a relief to know that they’ve seen this reaction before!!

I pray that you turn the corner quickly and can report here feeling much better!

Big hugs to you, LL!
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Dear Lea - so glad they are offering you a treatment for your prednisone withdrawal symptoms. I pray it will be very effective in helping you, I think the two clinical trials mentioned by Dr. M are good news too. It's great you feel you are in good hands with her. It sure sounds like you are. Continued healing prayers and for peace.

Lord, be gracious to us;
    we long for you.
Be our strength every morning,
    our salvation in time of distress.
Isaiah 33:2
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Dr. UC sound on the ball! Happy to hear positive feedback! Hope the hospital stay brings good results.
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Lea: UC Health sounds like they know what they're doing. Prayers for the hospital stay.
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Praying that you will feel God's arms around you in the hospital, and also His love. We are all hopeful that your stay will produce great results in your continued healing and that you'll start feeling more and more like your old self very soon.
May God bless you and keep you. May He make His face shine upon you and give you His peace.
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Scripture du jour: Today it's very windy and rainy here in MN. There's the usual melting of snow and inevitable flooding. The ground is being readied for planting. So I was thinking about what scripture says about sowing and reaping. This forum is like a plot of earth, with it's own microculture. Those who participate on this forum are reapers and sowers, often the participants are both at the same time. We reap what we sow, even on this forum. What we put into the "soil" of this thread will show itself for what it, eventually. "Don�t be misled: No one makes a fool of God. What a person plants, he will harvest. The person who plants selfishness, ignoring the needs of others�ignoring God!�harvests a crop of weeds. All he�ll have to show for his life is weeds! But the one who plants in response to God, letting God�s Spirit do the growth work in him, harvests a crop of real life, eternal life. So let�s not allow ourselves to get fatigued doing good. At the right time we will harvest a good crop if we don�t give up, or quit. Right now, therefore, every time we get the chance, let us work for the benefit of all, starting with the people closest to us in the community of faith." - Galatians 6:7-10 LL, thank you so much for cultivating this rich plot of cyberspace with the intimate details of your often journey; the knowledge and wisdom with which you enrich us all. Thank you for graciously bearing with the invasion of harmful creatures and weeds. This thread, of your blood, sweat and tears, will bear fruit way into the future, way beyond this forum. Blessings to you! Be lifted up high on the cloud of prayers!
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Who needs a laugh this morning? Moi got sucked in to buying an anti vertigo/anti dizzy magnetic bracelet on Amazon for the low low price of only $25. It has some great reviews, probably by the manufacturer, who says it works GREAT for getting rid of vertigo and dizziness entirely, yay! Been wearing the thing and no change at all, naturally. I saved the packaging so I can get my $$$ back refund guarantee. 🙄

Apparently there's a sucker born every minute.
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Bandy, nothing like tooting your own horn. You say a lot about nothing. Your posts are so long, I just skip them.
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Hi Lea! Aren't those anti-vertigo bracelets for using to avoid sea sickness? Apparently, they will not work on terra firma. Book a cruise immediately, then try it out! ; ) Happy to be of service with suggestions. LOL, I just crack myself up! (note to commenters: this is a joke)
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Ty, this one is for land. Useless though it is.
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Lea, sorry to hear about the bracelet results - I was hoping something like the Sea Bands - which press against and focus on acupressure points could have provided some relief for you. If you google Acupressure used for vertigo, it states, "Acupressure can be very effective in numerous ways; one of those ways includes reducing vertigo symptoms naturally by stimulating specific pressure points."

Probably acupuncture may also have its benefits - there's been clinical studies done on this too.

You've come such a long way since first diagnosed ...I hope you continue to make great improvements and advances forward!

https://www.google.com/url?esrc=s&q=&rct=j&sa=U&url=https://alignwc.com/acupressure-for-vertigo-relief-3-pressure-points-try/&ved=2ahUKEwj7mZmHprb-AhW4MlkFHdHKAyYQFnoECAAQAw&usg=AOvVaw03yY8l7-mcRoMSHb9ASukc
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LL, I run all amazon products through FakeSpot.com. It's not foolproof but it's helpful to know just how many of the reviews are real...or not. You just copy and paste the url into the Fakespot field next to the blue "Analyze" button. Caveat emptor (Latin: "Buyer, beware.)
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Ty Geaton. Good to know.

Hope, Sea Bands address nausea specifically which is not a real issue for me. Plus, it's imperative those metal buttons stay pressed right up in between the tendons on the wrist at a certain spot at all times, which in unrealistic imo. It's also unrealistic for me to think any device I order online is going to give me relief after 8 weeks of being THIS sick, who am I kidding?
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Lea,

I want to read your review of the bracelet that you tried. I know that you wouldn’t leave out the part about returning it because it did nothing at all.

I hope you feel better soon.
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A little glitter and glam for this week:

Throw a little glitter in today’s face
She’s bright like glitter and bubbly like champagne.
I quite like sequins. I think it’s the drag queen in me. – Sienna Miller
Don’t let the insecurities of others dull your sparkle.
Too glam to give a damn.
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