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You're welcome Lea. Glad my link helped.
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Ty Pecan. Things went to hell in a HURRY earlier tonight when my symptoms rushed back with a vengeance. My neck felt disconnected to my HEAD AGAIN and the drunk feeling was worse than ever. I couldn't even WALK w the walker fgs! I'm back on 80mg of prednisone again (The taper to 60 was the issue I'm sure) and 3 hours later things have calmed back down a bit. Ugh, voodoo medical care I'm involved in here it feels like, doctoring MYSELF 😑. The Neuro I videoed w cancelled my appt with a different Neuro for tomorrow and squeezed me in to see HIM on Monday instead. I'm ok w that bc I really felt as if he cared when we spoke.

Meanwhile UC Health at Anchutz Cancer Center called to see if I could get the second opinion THIS FRI instead of Apr 25th. Yes.....please! They asked me 50 questions and left me feeling like this doctor would be helpful to me, PLEASE GOD. I'm floundering around here, obviously, being tapered too fast off steroids etc. Someone must have a better plan here than VOODOO which is how it feels! I'm letting Dr C know the taper to 60 was disastrous, pretty much, and I'm staying on 80 at least for 5 days more until the Neuro and other Oncologist weighs in on all this crap. When Chuck was weaned off prednisone by the Mayo, it was over months at 5 mgs per drop, NOT 20.

I feel like I'm losing faith here fast. And I'm super suspicious of the Skyrizzi which feels like truly a stab in the dark too! At least I'm not crying, so that's something. Crying while wildly dizzy and discombobulated is a giant mess, how STUPID is all this???????? Am I crazy or what? Lea Light is fading fast and Lea Heavy Duty wants to come out now and raise some hell to get answers !

I know these posts are all over the place, which is a rotten feeling. Please pray that someone knows SOMETHING here soon so I can get off of this rollercoaster thats now ongoing for 36 days tomorrow.

DD was sobbing over the sapphire ring and earrings I gave her tonight. I told her the set was one of the earlier gifts her dad had given me about 40 yrs ago. That WE wanted her to have it. She was so touched, I've never seen her react that way about anything before. She was still crying as she walked out the front door. 😘 And it takes nothing to get ME crying lately so we had ourselves a lot of tears tonight, but good ones. We bought her a little cake too and the spa basket was a big hit.

Thank you to all for your feedback, input and caring about me in general.
Xoxoxo
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Lea, it is unimaginably hard to be on such a roller coaster ride, just beginning to gather a bit of hope and then hit. It is a teeter totter up and down. I am so sorry. I can't believe that in the midst of all that you brougtht to your daughter this moment on her 30th BD that she will NEVER EVER EVER forget, especially that it was an agreement you and her dad made, and that there is great peace between you two now. This is a gift she has forever, and I don't just mean the jewels.

I so wish you felt better. I hope you will have something to knock you out into a quality sleep tonight; I can't believe the sleeplessness is helping anything at at.
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Lea, I just can't imagine what you are going through. I'm sorry that things are so up and down. I never really know what to say to you cause anything I come up with ends up sounding trite.

That you come on here every day and keep us up to date makes you a marvel in my eyes. I'd probably be curled up in a fetal position.

Still praying...........
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Lea: Happy 30th birthday to your DD!🎂🎂🎂
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Lea: Prayers for you to feel better.💞
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Lea, I don't post much here, but know that I read what's going on with you every day.

Yes, let the "give me answers NOW" Lea come out to play!

((((((Hugs)))))))
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LL, we here are just bystanders but the Lord is everpresent for you and with you, to carry you when you feel like you can't drag yourself another step on this journey. Many are praying for you every single morning, when His mercies are renewed, as He has promised. You will be lifted up on a cloud of prayers today. xoxo

Scripture du jour:

"We don’t want you in the dark, friends, about how hard it was when all this came down on us... It was so bad we didn’t think we were going to make it. We felt like we’d been sent to death row, that it was all over for us. As it turned out, it was the best thing that could have happened. Instead of trusting in our own strength or wits to get out of it, we were forced to trust God totally — not a bad idea since He’s the God who raises the dead! And He did it, rescued us from certain doom. And He’ll do it again, rescuing us as many times as we need rescuing. You and your prayers are part of the rescue operation — I don’t want you in the dark about that either. I can see your faces even now, lifted in praise for God’s deliverance of us, a rescue in which your prayers played such a crucial part."

- 2 Corinthians 1:9-11 (The Message)

...and...

"Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good."

- Romans 8:26-28 (The Message)
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Nothing you say is "trite" Gershun, please know that. You've helped me cope w all this (all of you) in more ways than you'll ever know.

I slept better last night and took nothing in the way of even a Tylenol. Pure exhaustion is more potent than anything I guess. I'm ready to face another day today, so I woke up to do so.

One day at a time, I guess, although some days it's more like 1 hour at a time.
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Lea, I am more of a listener than a talker. Sometimes I don't have the right words to say so I don't post anything. Just know you are on my mind and my prayers daily. I get happy when reading about the improvement of your symptoms, yet I hold my breath because I am so afraid to be disappointed. At the same time, I am amazed at your honesty, strength (and weakness.)

Bless you Lea. You are a child of God.
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"...but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31 NIV

That is my prayer for you today after a rough evening, that the Lord will renew your strength, so you'll be able to run and not grow weary, walk and not be faint, and that soon very soon you'll be soaring on wings like eagles.
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PB, many thanks. My weakness right now seems stronger than anything, I hate to say. I so want to know this will resolve, but all I'm hitting lately seems to be roadblocks and Who Knows? Now with the referral for a 2nd opinion at UC Health. So much confusion and misinformation w regard to "insurance " it's maddening. Literally THE last thing I need right now.

Thanks Alva. You say, "I can't believe that in the midst of all that you brougtht to your daughter this moment on her 30th BD that she will NEVER EVER EVER forget, especially that it was an agreement you and her dad made, and that there is great peace between you two now. This is a gift she has forever, and I don't just mean the jewels."

How I honestly managed to pull THAT rabbit out of my hat is a miracle. It makes me question how on earth I can make jewelry bouquets and vases when my ability to function at ALL is this compromised. I guess I won't borrow trouble on that matter right now since today's goal is to keep the waterworks turned off and DRY🙄. Small goals seem more manageable right now.

Amen Funky. From your lips to His ears today.
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Yes, our system's insurance into the mix is a nightmare. They make it so bad that the illness itself fades to the background (rarely).
Kaiser here has no retina specialist (yes, in SF, no retinal specialist) so they are farming their patients (N. being one now) out to another group.
They will pay. But he has to go to THEIR hospital for the procedure and already being warned to get ready to cough up 40K by the non-Kaiser hospital while Kaiser waves it's hands saying "No, we'll pay". What do you bet the bills flood in? It's how it is.
And YOU are truly way too ill to have to handle that, so I hope DD and Chuck can do it.

It is so tough right now for you, Lea. I don't even know what to say. Seems just so tough right now. Everything uncertain and in flux while you pray for just moments of peace and feeling comfortable in your own skin.

I will stay tuned in again today.
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Sorry the symptoms have returned. But glad u will be seeing this new doctor earlier than u thought. I keep forgetting to tell you I have seen these jewel bouquets. They are gorgeous. I even donated a few of my Moms costume jewelry pcs to use in one. Have you seen the Christmas tree pictures done is costume jewelry. So pretty. U can see them on the internet. Just put in "Christmas tree pictures done is costume jewelry"

Cold here today. Thats what u get this time of year in the Northeast. The temps just go up and down. Them bam its 85 and 90 and humid. Not a Summer person. Lilly white and don't tan, just burn.

Looked up ur Swarovski mini animal collection. Love them! I have a David Winter cottage collection and I collected dolls. Have given some dolls away to a niece and donated to the church for auctions others. The ones I have kept my daughter gave me and a few my Mom. I use a makeup brush and an artist paint brush to dust them. Yep takes a while.

BIG ((HUG)) for today 💞
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Lord,
We pray right now in the mighty name of Jesus for our friend. We may not have ever been in the same room, but she sure is our friend.
Lord, we are begging for mercy here. The side effects are disabling Lea, and all our hearts are breaking for her.
We all just want her whole again.
Please, dear Lord, the floodwaters are up to her neck and there is NO ONE to help. No doctor with any wisdom.
But in your Word says that YOU are mighty to save. YOU are the healer. YOU are the one we can call on when we need wisdom. Your Word says that if we ask for it, you will give it.
So, we are relying on you you to give that wisdom.
We are relying on you to save.
We are relying on you to heal.
We ask this in the name of Jesus.
Amen.
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Lealonnie, if I were your neighbor, I'd come to visit you and bring a laptop so you and I could look at this site together. We both like jewelry! Since that isn't possible, go to this jewelry site and enjoy the eye candy: www.pippinvintage.com
I often take a look when I want to lighten my spirits. Enjoy! :-)
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Lea,

Sending my support and love to you today and everyday.

Every time I receive a dime in my change from a cashier, I say another prayer for you.
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Sending a prayer and a hug.
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JoAnn, I've made quite a few vintage jewelry Christmas items.......wreaths, a 3.5' Styrofoam tree that weighs 20 lbs, an antique framed jeweled Christmas tree on velvet, etc. I even made green pine (faux) wreaths one year w jewels and vintage glass ornaments all over. I put them all up every year and the house sparkles.

Thats a good idea how you dust the cottages. I have to wash the Swarovski animals in soap and water individually from time to time, which is tricky. That'll be one job I'll put off for awhile lol.

Fawnby, ooh, ty for the site! Ever since I was a kid I've been obsessed w jewelry. I even have (literally) dreams of creating a line of my own pieces but then the designs disappear from my mind when I wake up.

I wish we had a photo spot here on AC to share pictures, wouldn't that be fun?

Cxm, your prayer for me threatened to turn on the waterworks again ova here! 😁

Alva, after K said no referral is needed to UC Health 3x, they backtracked and put one in 2 days ago..which will take 2 weeks to approve 😑 UC Health is trying to get me seen asap after it's HOPEFULLY approved, although if those dimwits try to deny me a Medicare right, I will appeal.
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Bandy, no appointments today or tomorrow, Neuro i videoed w rescheduled me w him in person on Monday across town. UC Health couldn't get me seen w melanoma specialist tomorrow bc of not getting the required referral from my insurance co.
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I echo Polar, Gersun, and Barb. I check in every night before I go to bed. I often have no words, but always, always lift you up in love and prayer.

You have the weight of the world on you, sister, and the red tape probably feels like a freaking anchor added to everything else.

Your time with DD is so touching and I guarantee that you thinking of her and doing that for her in the midst of your trauma meant the world to her. A mother’s love can be boundless, and she has felt yours.
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Scripture du jour:

Does God expect us/want us to beg Him?

Begging = persistence in prayer. Begging is our human reaction to a delayed response or the response we don't like from God. We don't have to beg God, since we are heirs to an incredible inheritance, and He is good all the time, wanting to bless us and give us things that are good for us.

"Even though it seems that Christ sometimes ignores us, He does not really, merely delaying His response to strengthen our faith and resolve. Answers can give great encouragement, but delay checks our sincerity and forces us to be more fervent, strengthening our faith. Christ's turning a deaf ear to the woman's prayer [in the parable in Matthew 15:21-28 and Mark 7:24-30] should encourage us in our prayers when they are not answered immediately. Even the most sincere and faithful prayers, as this woman's was, can be delayed by God. Because we give up so quickly, delay exposes many of us as having little faith, so Christ frequently tests our faith to improve its quality."

Source: https://www.bibletools.org/index.cfm/fuseaction/topical.show/RTD/cgg/ID/6564/Persistent-Prayer.htm

Many people in scripture begged the Lord, including Jesus when he was praying and sweating blood in the garden of Gethsemane. My point being that it is ok to beg God, but we shouldn't see Him as a fickle, stingy grandfather who needs cajoling to wrestle gifts from, but a "wealthy", loving, radically generous, dependable Father who is strengthening us by having us wait.

LL, we await your daily reports and your Prayer Warriors persist on your behalf every day!
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Pecan, I pray all the time. There is no crisis of faith here on my part, but a quest for answers from the medical community.
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Lea,

How are you feeling this a.m.? I echo Hopefloats, in that I am but one of many of us who check in every a.m. and every night to hope you feel better. Between those checkins you so often come into my mind.
Count me as one more hoping that there are answers out here that can help you.
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Good morning!

I would love to see all your jewel projects. I bet they are beautiful. Me, I am not artistic. My girls are but that's the the Dad side. I do crochet but not like I used to. This is my old Flicker Page. Read the captions because everything is not mine.

https://www.flickr.com/photos/15772172@N07/

Hoping this is a good day for you. ((Hug)) 💞
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I'm feeling at a 6 dizzy level after increasing the prednisone back to 80mgs. Mentally MUCH improved so Chuck has a smaller chance of me tearing his head off with my bare teeth. 😑 Level 6 out of 10 still blows but beats heck out of 9 where I was Weds evening. Nothing much has changed and I'm finding some work arounds to be more independent. God knows when this will end, so......

JoAnn....cool Flicker page!

Pecan I just lost a long post too.....what a PITA this site is. 🤐 I do appreciate your research efforts on my part, too. Bless you.

Hope, you of all people have had THE best most comforting words for me. Nobody "knows" what to say in times of crisis, but compassion and empathy are always well received. I don't need guidance on how to pray or what tenets to believe in, just a kind word of understanding and support is best. Of course, links to good medical info and personal experiences also go a long way in my book. 😁

Today we're going to try guided walking w Chuck holding my hands and the walker wi reach, too. I feel compelled to see what I can or cannot do, which has been practically nothing this whole time. Last time the guided walk was attempted, it was a disaster.
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Good evening!

Do let us know how that guided walk went! 🤞

I also would love to see your jewelry art!

Praying for you, tonight, that despite the steroids, you’ll sleep well. 🥱😴
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So glad for the improvement in dizziness.

“Even when I walk through the darkest valley, I will not be afraid, for you are close beside me.” Psalm 23:4a
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The guided walk w Chuck was exactly like walking on a floor of jello. 😑 Took me from a 6 to a 7 in short order. This sob is hanging onto me for dear life, that's for sure.

I'm trying to figure out how to add links to see photos of my Christmas jeweled pieces. Anyone have an easy way to do that bc I'm having a brain fart?
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