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Pecan my pm to you is on your profile page front and center.

I had to take a .25 Xanax today for withdrawal symptoms w prednisone, even at a 10 mg drop. . Shaking hands, racing heart, profuse sweating and bad startle reflex response to noise. It did the trick, thankfully, and I'm ok. Still dizzy of course. But I'm getting OFF of these meds period, no matter what. Long term hi dose prednisone is a bad thing plus I have no faith it's helping me. Nothing helps w the dizziness and prednisone makes it feel even worse wi 90 min of swallowing it.

I think you're right about Dr C 😑. Of course I was just joking about him being on A.C. For all his faults, I do believe he's tried to help me, even w the Skyrizi which was intended to try to calm down my over hyped up immune system. Trouble is, my central nervous system IS SO JACKED UP these days, anything tried is like pouring gasoline on a raging fire. I am glad he toned down his wise-assed mouth though. I can give as good as I get so both Chuck and I were ready to ask him, point blank, if he'd written me OFF yesterday. Which wasn't necessary.

I have been approved to use UC Health as I wish. Medicare allows this so Kaiser apparently has no choice if I want to switch. What I dont know is what co pay and co insurance costs will be. But, chucks friend w lymphoma has been using UCHealth (with Kaiser HMO also) w no complaining about costs so.....fingers crossed. I think it's a good idea that the 2 melanoma docs will put their heads together on my behalf. I am also praying that Dr M HAS had a case like mine she's dealt w in the past so she has some experience with toxic reactions of this caliber. And ideas too. So yes, I'm approved for clinical trials there if needed.

The "independent " neurologist is Kaiser, so is the Opthamologist I saw and who Dr C spoke with. Kaiser is all networked and the computers are linked, which makes it easier for all the docs to talk. In some ways, the concept is brilliant from a convenience and one stop shopping perspective. In other ways not so much.

Of course I know what a blessing it is to have been relieved of pain. Living with bone and lots of spine tumors, rib lesions and a liver SO HUGE and swollen it was crowding out and squashing my lungs caused me 2 months of excruciating pain comparable to nothing else. I was bed bound on a heating pad or ice and wearing a battery operated heated vest just to get to the doc appts and tests. Morphine was like taking an aspirin for surgery....did nothing for the pain level. I'm so Sorry your bil is suffering. I had decent results (from a distraction standpoint) with CBD w thc gummies, 5:1 ratio from Fivecbd.com

The blessings from God and the oncology dept have been many, and I'm grateful. All along I've prayed and asked for prayers from all who cared about me. Any prayers to any higher power will do, in any form at any time. No caveats on that.
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Clicking the large P on pecansielli will take you to your profile page where my message is. It is not in newsfeed.

The prednisone has been increasing my dizziness the past 10 days or so, I'd say.
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Scripture du jour Topic: poop Why? Because my incontinent 16-yr old Jack Russell Shorty left us a literal poop-storm in her pen this morning. Hadn't even had my coffee yet. I won't go into detail so just use your imagination. There is hardly a topic that the Bible doesn't address. There are at least 30 references to dung in scripture (including King Saul taking a dump in a cave). It's part of our human-ness. I'm not going to post those references even though the 3rd grader in me really really wants to. Just know that the writers of scripture didn't white wash or sugar-coat anything. If someone was going to concoct a spiritual magical fairytale, this is not the stuff they'd include. That's part of how you know scripture is truth. May everyone receive refreshing spring showers rather than a poop storm today.
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Lealonnie, I'm lifting you up to the ONLY "Higher Power" there is and that is God Almighty Himself, the Creator of the universe, and of you and me, and trusting that your transition off of the prednisone will go smoothly and the dizziness will subside quickly.
I'm hoping and praying that today and every day going forward will be a better day!
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Just bookmarking. ((HUG))💞 and...Have a Blessed Day
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I spent some of the evening and morning looking up withdrawal from prednisone. Wow! I wish someone had some magic answer out there other than enduring it. With your system so sensitive to change I think you will FEEL this; I am hoping DD or some other researcher has some clues, some magic answers other than go to bed for the duration. A sort of "wake me when it's over" attitude. Seems so world recognized this that there is even remarkably little "ju-ju" passed around to try. Somewhat a relief for the science-base in my skull.
Some seem to have a difficult time withdrawing after only 4 days on the drug; talk about a POWERFUL medication. For good AND for bad.
I am hoping you are feeling better today, third day of your titrating down. And I guess if you aren't we at least know there is a reason.
Looking forward to your updates.
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Lea, I am a HUGE proponent for alternative medicine.

Accupuncture has proven so beneficial in our lives, I, highly, recommend giving it a shot.

I, also, highly recommend accupressure if you can find someone that is good at it, feels like an Angles touch when done right.

I have a neurological chiropractor that dealt with my dizziness when I had a bad reaction to the hernia surgery I had. I felt like I was falling over all the time, even though I wasn't, it was my body and brain, I thought I was having strokes it was so bad. One visit, a couple of tweeks and I was good as new. He, also, taught me how to do the tweeks to recenter myself if it came back, which it did for a few mornings and I did the fix on the side of my bed and didn't have any issues during the entire day, only when I 1st woke up were things out of wack.

So, YES!!!!!!! Use all the alternative options you can afford, because good alternative medicine isn't like modern medical mainstream, you don't just get on a hamster wheel of tests, appointments and referrals. They make a plan and it is, in my experience, over and done within a week or two.

Contined prayers that you go back to a great baseline and get your quality of life back.
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Good morning, Lea. Prayers for peace and healing and trust in the Lord.

This scripture always speaks loudly to me.

Trust in the Lord with all your heart and lean not on your own understanding;
in all your ways acknowledge him, and he will make your paths straight.
Do not be wise in your own eyes; fear the LORD and shun evil.
This will bring health to your body and nourishment to your bones.

Love and ((((((hugs))))).

Proverbs 3:5-8
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Today I'm grateful in many ways. I slept better last night, and woke up feeling in good spirits. I'll take the prednisone in an hour and just deal w the withdrawal. Yes it stinks but I think my body is ready to be RID of it. Buh-bye. If I need a Xanax so be it.

If I'm in remission right now, I feel like I've witnessed a miracle. To come from deaths door on 2/1 to a place of no pain by 4/1 is miraculous. Dizziness aside......I can rest my head and NOT feel dizzy, meaning I have respite. Dizziness never killed anybody, as far as I know.

I'm walking almost exclusively w/o the frame now, too. I cleaned the kitchen counters earlier and wiped down my stainless steel fridge and dishwasher, my arch nemesis. Whoever invented stainless steel must be a sadist 😑

I've had no surgeries and only 2 treatments in all to date. The first tx produced pretty mild side effects but must've killed off a lot of cancerous tumors and lesions for my blood numbers to have improved to this degree.

I just feel grateful today for the blessings that God has bestowed upon me. And grateful to all of you guys for the support.
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Itrr.....thanks for that heads up. My bff was telling me about hospitals in China, how they have 2 wings.....the East wing where herbal and natural medicine is practiced, and the West wing where our ways are practiced. The "Lets Write Prescriptions That Don't Work But Make Big Pharma Richer" method of making us sicker. I am going to look into what services are covered by my insurance now and go from there. I'm open to a holistic approach to helping me, especially since I have such a sensitive system.
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I've been so happy to hear that you continue to feel better and better each day Lea! Here's praying your next PET scan shows great results.

As an aside, ITRR:
"Accupuncture has proven so beneficial in our lives, I, highly, recommend giving it a shot."
LOL. I hope you did that little double entendre mixed in with the positive message about acupuncture on purpose! Very nice play on words!!
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Lea, so happy that you found great reviews on the vertigo bracelet...I really hope it works, and provides great relief for you!
Wishing you a peaceful, wonderful weekend! :)
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"Whoever invented stainless steel must be a sadist" gets added to my book of Leaisms.
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Its true though right Alva? That I have 10 products under my sink to clean stainless steel with so it looks pretty is absurd! 😂🤣😃 Black appliances rock.
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It IS true. I love the look, hate the work.
Lea, I recall you asking about Kaiser and acupuncture referral? And payment?
Here it is a yes, and for my son-in-law they let him do it for plantar's fascitis--Washington State. Didn't work, so he is off for the expensive orthotics after the year we all spend messing with other options, but he loved it and said he would pay to do it for fun. Just claimed it was incredibly relaxing and put him to sleep almost every time he got it.
Just to let you know our Kaisers are good with acupuncture.
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Alva idk if my plan pays for acupuncture. I will ask my PCP on Monday. I see the docs exist in Denver via Kaiser.........just not whether my Medicare plan covers it.

Thanks Hope! Happy weekend to you as well.

Notgoodenough says, As an aside, ITRR:

"Accupuncture has proven so beneficial in our lives, I, highly, recommend giving it a shot." 😂🤣😁

Alva, today I didn't need a Xanax but the Cray Cray dizziness after the pred has been wretched. No magic way thru the taper.....just suck it up one day at a time 😣

We're off to see my son and grandson tomorrow and then asking DD to come by w the bf for pasta Puttanesca which is her favorite. Planning a good day and a restful Sunday for everyone here.
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My son-in-law is medicare plan as well, Lea. I am guessing they will, but I don't know that it works the same state to state. We'll see. How sad is that when my kids are going "medicare age", huh?
Ah, Puttanesca is the best, and the more heat the better. I love heat in any food. Then of course, there is just the NAME of it, which I am totally enamored of. I love arrabriata as well.
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I am a new member, and I joined today in order to post to this thread I’ve been following. Lea, your story and writing are so compelling, I have been finding myself coming here to read your updates and the beautiful outpouring of love and care from other members. It’s fantastic.

I am not a joiner, but I thought maybe I needed to sign up and tell you that today I was demolishing a bedroom in my home which is being remodeled. I was tearing the window trim off and there, as I pried the sill up, was a dime. I immediately thought of you.

As much as I prefer to lurk and read privately, I knew I needed to come by here and drop that dime in your piggy bank. I wish you the best in your treatments and for a full recovery.
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Everdaisy, I'm touched that you came here to support me and let me know you found a dime! 😁 At our lowest moments, that dime I found in the ER bolsters our spirits, Chuck and I both. May I suggest you start your own piggy bank and add dimes to it whenever you find one? 😁

Ty again for brightening my evening.
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Oh my goodness!!! Father God please keep this young lady and her husband in your healing hands. I pray you take all this cancer and heart ache away and give it back to Satan. Amen
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Next time I go out, I’m going to scatter a few dimes here and there. I didn’t know that finding dimes gives people so much hope. But - is deliberately placing dimes cheating? What is the theory about how Dimes of Hope get there if they are thought to be from a loved one? I am new to this and totally serious.
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Lea; Hope that you have a good day with your son, your grandson and your DD & bff.
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@Fawnby Good question. Faith in dimes?
I believe if Lealonnie1 said smelly socks brought her good luck, forum members would be searching for smelly socks. I urge caution with that.
Quoting Lealonnie1 for context, "Any prayers to any higher power will do, in any form at any time. No caveats on that."
Hope this is simply political correctness at it's best Lealonnie.
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Patpaul, do you have a purpose in posting such a snarky comment to me and urging "caution" over my words and making fun of a JOKE I made earlier? Why are you posting on my thread if you think I'm so silly? Odd, that you have a brand new account with all this interest in my thread. There are cancer groups on line if you are interested in " facts only". Please feel free to leave here and avoid my posts entirely, no problem. And no, I'm not being "politically correct" by saying any prayers to any Higher Power will do. Not everyone shares the same faith or belief systems and that's fine, it's a big world out there and open mindedness is wise.

Yes Fawnby, scattering dimes all over the place is cheating. At a very scary time in my life when my father was dying, I was asking for help from God and his deceased siblings.....signs that I was doing the right things for him. Those signs came to me in a few different forms, one being that I'd find dimes when I was most needing guidance. I'd feel comforted by those signs, too. It's not "faith in dimes" but faith in signs from above. Hope is something easily lost but very hard to find in times of stress and chaos. If you think signs from above are silly, that's fine too. But I don't, and have chosen to share my experience even WITH the threat of ridicule. Nobody "has to" subscribe to my beliefs, I'm just telling it like I see it.

Here is a link to one of MANY articles on the spiritual meaning of finding dimes:

https://spiritualdesk.com/what-is-the-spiritual-meaning-of-finding-a-dime/
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Some people feel the need to speak even when they have nothing to helpful to say, patpaul is a new member without a profile and has been busy spreading wisdom across the forum Lealonnie 🤷🏻‍♀️

BTW, hope your day is off to a good start 🤗
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Lea, prayers, good thoughts and gratitude for your improvements today.

((((Hugs)))))

AND people, we have a new crop of trolls. Don't feed them.
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Good morning, Lea. As you know I believe in signs too. God cares about even the smallest things in our lives as well as the biggest and He can move mountains or drop dimes or lilac branches or arrange for others to do that for Him.. He comforts us.

2 Corinthians 1:3-4 - Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

And here is some glitter for you!

A life without glitter is no life at all.
A little glitter can turn your whole day around
When you're around me, you're going to get glitter on you.
Even dirt glitters when the sun is shining upon it
Personality is the glitter that sends your little gleam across the footlights and the orchestra pit into that big black space where the audience is. Mae West

Have a good day!
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Scripture du jour: Because this past week we had record breaking temps 85+. This morning woke up to snow covering the ground and more on the way. I felt like pulling the covers back over my head. "The Master,�God, has given me ����a well-taught tongue, So I know how to encourage tired people. ����He wakes me up in the morning, Wakes me up, opens my ears ����to listen as one ready to take orders. The Master,�God, opened my ears, ����and I didn�t go back to sleep, ����didn�t pull the covers back over my head... And the Master,�God, stays right there and helps me, ����so I�m not disgraced. Therefore I set my face like flint, ����confident that I�ll never regret this. My champion is right here. ����Let�s take our stand together!" - Isaiah 50:7-9 (The Message) LL, like a true fighter, keeps getting back up with the help of the Lord � her personal champion. Thank you, God!
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Folks, MY ACCOUNT IS NOT NEW! That's a smear. You may well have new trolls here, I am not one of them. If you knew who my wife was...... You certainly know her. Lealonnie I am sorry for offending you. You made a joke about smelly feet to me a week ago and you're too sensitive to let me make a joke back about smelly socks?
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Lea,
cc to Barb, CWillie:
I love you. Thank you.

This thread was created with such love. It has been filled with such beautiful stories and with so much joy, heart, support.

Can we just step over those folk, step around their manure spreaders and wait for the flowers?

There are so MANY GOOD PEOPLE here. It takes no genius to know who's who. Let's just rise above them, so Lea doesn't have to shut down this thread.

Speaking of the "one we love". Good morning, Lea.. Day FOUR of the first titration. Are you still a dizzy-dame, or is it better?
Have fun with your grandson and the family. Remember, it's social media without a blocking button. It was BOUND to happen. Small, pathetic people abound in our world, but an army of good people surround you in a massive hug every day.
Shields UP!
(OK, I did watch the latest The Last Kingdom last night)
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