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Lea,

As you know, after my daughter graduated from LSU she moved to Colorado. She fell in love with Denver!

Unfortunately, her relationship with her boyfriend fell apart. She decided to come back to Louisiana for a while and then return to Colorado. She is able to work remotely with her job.

Yesterday, she was talking to her old neighbor on her phone. She said that there were tons of moths in Colorado right now! Supposed to be due to the weather or something. Have you seen lots of moths in your area?

Y’all don’t deal with mosquitoes like we do here, huh? Our mosquitoes are awful. My daughter said that she loved living in a mosquito free area of the country when she was in Denver.

You don’t have the humidity that we have here in the south. Louisiana is a freakin swamp!
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Nhwm, no, I haven't noticed moths. We do have mosquitoes here but not an issue like in southern states which is why I moved here to begin with. I don't tolerate humidity (lungs) or mosquitoes so the semi arid climate is best. But it's been a terrible Spring this year with SO MUCH RAIN, it doesn't even feel like Colo anymore 😑

PS: the doctors and specialists cannot tell me if my CNS condition is permanent or temporary, or how long it will last, or anything else, bc they have not really seen it occur but a few times throughout the history of immunotherapy treatments. "If" I stay in remission and "at least 85% w/i a year" is too much to think about right now, having dealt with this for so long already. I prefer the One Day At A Time approach in an effort to save my sanity, tbh. I will continue on with my monthly IVIG infusions which are thought to be the best treatment, and pray for the best outcome.
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I’m continuing to pray with you, Lea. You’ve had so many challenges in this journey. Everyone who has followed your journey is hoping that you’ll completely recover.

How is Chuck doing? Is he feeling okay?
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In your response earlier Lealonnie, you said that you were not expecting God to fix you. Can I ask why not?
The Bible says that if we have faith the size of a mustard seed that we can say to our mountain move and it will move. So we don't have to have a lot of faith to make our mountains move, but we must believe that they will, and "expect" that they will.
So I am expecting God to fix you and am thanking Him in advance for doing so.
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Nhwm, Chuck is feeling good, thank God. Way less overwhelmed too bc we're more into a routine now with food being delivered and laundry being done less often, housekeeper coming in, etc. I'm not 100% incapacitated either, so I can help clean up a bit too.

FG: bc people wouldn't get sick and/ or die if God fixed every issue for all of us. My fb stage 4 melanoma group would not be filled with memorial photos of loved ones who succumbed to their cancer if He did. I know most of these people pray and have faith, too.......yet they're not healed bc that's how life plays out sometimes. That's my belief and not something I will change my mind about. If God decides to heal me, great. If not, not. However this plays out, I won't be shocked, is my point. I'm grateful to be alive 5 months after this dx, tbh.

Nhwm.....Its MILLER MOTH season, I forgot! They come around yearly and are hatching right now, Chuck said. I don't go outside so.....😑
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Lea,

I am glad that Chuck is feeling okay.

All I know is that my daughter said that the moth situation was due to the recent weather. Her old neighbor said that the weather hasn’t been the way it usually is in Colorado.

Colorado is such a beautiful state. I’m sure it’s a lovely place to live. My daughter said that the cost of living has been increasing and that it will be a struggle to buy a home there. Her rent was high. She’s sticking to a strict budget right now.

I feel for younger people these days. Everything is terribly expensive.

I don’t think that I would have had the courage to move across the country like she did after graduating from college. I’m proud of her. She did land a great job. There are more opportunities there than there would have been here. It’s wonderful that her company has allowed her to work remotely. She is looking forward to returning to Colorado.
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Sending hugs and love and prayers, LL.

It amazes me how you're still such a help on this site! I know that so many are so very grateful!
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Nhwm: Miller moth migration season is typically between May and June, but Colorado's recent rain storms are scattering their migration patterns. This means the moths are here sooner than expected with more on the way. The Denver Museum of Nature & Science says the moths are fragile and need to seek shelter from the rain.
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Lea,

I have been to that museum. It’s lovely. I have been a few times. After our children were born and we took them, my daughters bought rocks from the gift shop. My oldest daughter was obsessed with rocks at the time!

What is your grandson interested in right now? He sounds so cute! Maybe one day I’ll have grandchildren to spoil. I don’t say anything to my girls.

They aren’t in relationships at the moment and I don’t believe in pressuring children to have children. It’s their life and I want them to live it as they wish. I would adore having a grandchild though.
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One of my favorite things as a kid was a rock set! The little rocks were glued on a board, each was labeled, and set into a white covered box. Golden....my favorite was the glittery mica or iron pyrite rock, of course...lol. I guess we got it at a museum nhwm. My grandson likes wheels in general......we showed him a ride on fire truck we keep at our house that's been in the family for decades. He immediately flipped it over to spin the wheels instead of riding on it. He also likes Duplos and tool bench things he can hammer. I'm sure you'll have grandchildren when the time is right. I hope so....they are definitely fun, especially that we can send them home ! 🤣😃
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Lea,

He sounds precious! Funny that you mentioned tools. My youngest daughter loved playing with her hammer and peg tool toy. I guess she was around 2 years old at the time. Well, all of a sudden I heard a loud crash!

She must have tired of hitting the pegs back into the holes and decided to try out her hammer on coffee table with a glass insert.

She was amazed at what she was able to do with her hammer. I wasn’t all that happy with her destruction! LOL 😆 Oh, the things that kids are curious about and try! Needless to say, we had a talk about breaking things. They are kids and will try things.

My MIL said that my husband’s brother took a screwdriver out of his dad’s toolbox and stuck it into a wall socket because he was curious! Sparks started flying! Geeeeeez!

I loved playing with my younger brother’s trucks and cars. Back then they were all metal. Those Tonka trucks were a lot of fun! My girls liked playing with the little matchbox and hot wheels cars. They are cute!
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Lea - there was a mica mine across the river from where I grew up I think it influenced me. lol But I like all rocks. The kids and I used to collect them. We found one that looked strange and took it to the provincial museum to see if they could identify it. They couldn't! It was a mystery rock.
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Golden,

My oldest daughter loved her rocks! The younger one had to copy her sister and became fond of rocks too.

I love that you found a mystery rock!
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Saturday morning check-in for me. I'm scrolling through trying to keep up with things. Lea, I admire your perseverance and steadfast determination through all your have been through.

I'm trying to find where the discussion of rocks originally started but I'm not finding it. My grandkids like the blocks you can buy for about $5.00. They chip away the outside to find the surprise rock inside. They've never hit the gold piece, but they have gotten some very pretty rocks over the years. Back when we did Christmas stockings, these were always a hit with the gks.
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Lealonnie, "We pray that you'll have the strength to stick it out over the long haul--not the grim strength of gritting your teeth, but the glory-strength God gives.
It is strength that endures the unendurable and spills over into joy." Colossians 1:11 MSG
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GG.......NHWM just mentioned rocks a few posts down: "I have been to that museum. It’s lovely. I have been a few times. After our children were born and we took them, my daughters bought rocks from the gift shop. My oldest daughter was obsessed with rocks at the time!"

Those chip-away blocks you mention are very neat things. Kind of like an archaeological dig combined w a treasure hunt 😂

FG, ty for the prayer.

Golden....my sister in law is a hoarder. A real full fledged, dyed in the wool hoarder. Her new obsession is rocks and minerals. But HUGE ones mostly that sit on pedestals and are quite fascinating looking if there weren't so MANY of them 🙄. She goes to rock shops and estate sales and buys a lot of them to put around her house. I bought her sliced rock bookends for Christmas this year. Nobody is allowed in her house but she sends me photos of all her new acquisitions. I think she's up to 12 chandeliers in her living room alone! Plus she's taken a volunteer job at a thrift shop (!) or 2 so she can be the first to lay eyes on the new donations that arrive. Sigh. That's where the last cameo glass chandelier came from. Meanwhile, you cannot open her garage door for the stuff that's packed inside.

I went down to 30mg of the poisonous prednisone today, already feeling miserably dizzy....so I don't have high hopes to go dancing tonight. Plus Chuck doesn't dance 🤣😂😁I hope everyone has a great Saturday
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Lea,

I started making jewelry years ago because it is so much fun to buy gemstones and create different designs to wear.

Nature provides us with gorgeous rocks that serve our needs in many ways.

My niece has been working as an interior designer for many years. She loves using marble, granite and quartz in her designs.

My birthstone is opal which is a beautiful rock! 😊
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Man! 12 chandeliers! Makes me wish this site would let us share pictures!

We are currently babysitting our four year old grandson, while his parents are on a date.

Ya know what 4 year olds do NOT like to do?

Nap!

Ya know what 59 year old grandmas like to do?

You guessed it! 😂 😴 💤

I’m sorry about the Taper Dizzies. I pray that with the last taper, those dizzies will leave forever!
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Continued prayers particularly for the dizzies. God tells us to be persistent in prayer.

“Rejoice in hope, be patient in tribulation, be constant in prayer.” Romans 12:12

Oh my goodness, Lea. your sil! I wouldn't want to go in her house. I love rocks too and those sliced ones but you really have to pick and choose if you are going to display them. Well, I guess you don't have to, but for most people you do.

You are getting to the end of the prednisone Yay! We will have to have a "No More Prednisone Party" 🎈🥳🎈only I think it needs a catchier name. Maybe Prednisone Free At Last" or something like that.

Dancing that went out with the laundry a long time ago! Ex was a pump your arm dancer so I didn't encourage it. lol We did alright if it was a jitterbug sort of thing - shows how old I am. 💃😆

Busy and frustrating day here so I am going to get well into the latest mystery -after I have done the online banking I have been putting off. Though technology can be very frustrating. I am always so very grateful for online banking.

Started myself on ginkgo and, wow, I have more energy and feel better. Let's see if it lasts or I crash in a couple of days.💥💥💥

Have a good evening all and hope you sleep decently Lea. It really helps.

cx - naps Oh yeah!!!💤💤💤
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Lea: Just checking in to say that I hope you've had a good day with dizziness lessened. Hugs.💚
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Golden, just out of curiosity, why the ginkgo? Reason I ask is I heard it was good for tinnitus, took it for a couple of weeks and developed real nervous anxiety. I went back online and read that if you are a person prone to anxiety it can make it worse. I hope it doesn't in your case but be forewarned.

Lea, still praying..........
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I love rocks, too... when my boys were younger I bought a real rock tumbler (like pros use) but oh man it took a long time to polish a few small stones (you have to keep reducing the size of the polishing grit, plus it was somewhat messy...) So, I'd rather skip all that and buy them post-polishing now. I don't know how they do the big rocks and gems (like the huge geodes of amethyst)? Hand polish? I can't imagine how long that would take... When I was in my early 20s my Mom took me on an Iberian peninsula bus tour and when driving in the High Atlas Mountains of Morocco, I saw fields and fields of geodes... just lying out in the open. I bought some cool polished nautilus shells there that were fossilized in rock. Back then it cost almost nothing.
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Good morning, Lea. Praying for a decent day for you. 🙏

Dizziness go away and don't come back another day! Shades of an old nursey rhyme.

Thx gershun. That's interesting. Ginkgo in combination with a substance called cistanche, has been shown to improve QOL of life for people suffering from CFS. We with CFS are lacking in energy. So far I am finding that it helps quite a bit.

Strange that you have read that it increases anxiety as what I have read says the opposite. However I had trouble getting to sleep last night so I am cutting down the amount I am taking though It may have been too much caffeine. It's trial and error all the way.

Have you tried Relora for anxiety? It seems to help me. And I do deep breathing especially at bedtime when my thoughts are spinning through my head. I have to be quite persistent with it but it does work for anxiety if I stick with it.

Geaton - I thought of a tumbler too but never got one. I think they must use something like an electric sander for big rocks. What a wonderful trip with your mum. That's one I would have loved to take. Geodes fascinate me and the fossil...love, love, love!
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Geaton, the last trip we took was in 2019 for 2 weeks to Morocco. We traveled the Atlas mountains too. Boy what a memorable trip that was, from sleeping in tents in the desert and riding camels to staying in Rabat in a super fancy Riad, to the chaos of Marrakech, to eating dinner in the home of a Moroccan family, I could go on and on. I instinctually felt the need to pick an adventurous trip that year, maybe knowing it'd be our last. We traveled yearly since 2009, mostly to Europe, and enjoyed it tremendously. Then Chuck fell off the truck in July of 2019 after Morocco and needed a pacemaker. That was the beginning of the end of traveling for us, so we're very thankful we did it when we were healthy enough to have done it.

No relief for me from the dizziness lately. The taper isn't going well. Slept since 3 pm yesterday and can honestly go back to bed now, but won't. 😑. The exhaustion level with each 5mg reduction is overwhelming. DDs idea to drink Powerade didn't work. Shocking, I know 🙄. Nothing works. Nada. My friend called to suggest Chuck and I play more "games like dominoes and puzzles and cards" together, which is a sweet idea, nothing more. If there was a simple, easy answer for a central nervous system disorder out there, it'd been found by now methinks. Especially if it was in the form of playing cards or Powerade.

Thanks for always checking in llamalover. Btw, do you own llamas? I love llamas too, they're soooo cute 😂😁

Golden girl, I sure HOPE I can get off the prednisone fully. Your lips to God's ears. I don't know WHAT to think at this point, tbh.

NHWM: what sort of jewelry do you make? You know about my OBSESSION with jewelry, right?
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Lea,

Necklaces, earrings and bracelets. It’s relaxing and was therapeutic for me when I was caring for my mom. It took my mind off of mom for awhile.
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Wow, Lea. You and Chuck had some great trips I am sure. The one you describe takes the cake! Morocco must have been a wonderful adventure. I am so glad you did it when you both could too.

I am sure your body needs rest. You have been going through so much. If anything rest helps with healing. I am sorry this taper is not going well.

Card games or Powerade - wish it was that simple.

Dd has CRF (Cancer Related Fatigue) and has asked me to look into several supplements for her. I suspect R has it too. You may have fatigue related to your cancer as well as everything else. Lord, have mercy!

(((((Hugs)))) to you for being such a poster child (person) for coping with all this.
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Golden.....severe fatigue is a common side effect of prednisone withdrawal and I experience it for several days each time I taper down. Meaning there is little to no time between tapers w/o severe fatigue. As opposed to when I was on high dose steroids and could not sleep at all. Combine this w severe dizziness that restricts me to movement between bed and recliner due to severe symptoms, and I'm worse NOW than I was at the beginning of this mess 14+ weeks ago. I have no idea where I'll wind up........totally bedridden, or what, once the steroids are out of me. Or back on them just to function at ALL? As non functioning as I am. The jury is out bc who knows?
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Lea, interesting article I found--

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9138419/

Apparently rehab exercises, etc. CAN be helpful.
(((Hugs)))
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Barb...I read that article a while ago. It says not much, in reality, aside from treating the hearing issues which aren't plaguing me as much as the vertigo issues which they SAY resolve (most often) with steroids and vestibular therapy TO REDUCE FALLS which means teaching me to use a walker and live with it. I also likely have uveitis in my eyes along w the rest of this chit which was not addressed in terms of curing. The jury is out on several of these rare cases and steroids were helpful in several more. So far so bad for me w the steroids but again, I'm not off of them yet. My hearing has not improved, the tinnitus is even louder than ever at certain times but I've learned to tune it out mostly. What is odd to me is that the main focus of what these articles talk about is hearing loss. A person can live if theyre deaf, even.....but a person cannot live any semblance of a normal life with THIS LEVEL OF DIZZINESS which is all consuming and forcing me to live in a recliner or bed w my head supported, or in a wheelchair while out in public. I'd prefer to be stone cold deaf, tbh.

According to the chart, 2 ipi/Nivo (That was my immunotherapy treatments) users were hit with audiovestibular toxicity reactions., both resolved with short term prednisone, unlike me. One had a different treatment Solumedrol, 1 mg/kg x3 days (IV) along with the prednisone which I did not. 1 guy of the 4 is the same and the other dead of the disease. According to my docs, prednisolone/solumedrol is IV prednisone and no difference .... I did ask about that when I first read of it being used as a tx.


I'll check out ENT PT at some point, who's already said they can't help me...2 different groups....but I plan to ask if they'll try. What have I got to lose at this point? I suppose they can make me worse....idk.
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I am so sorry for all you are going through. Although the vertigo was not as intense I do know of situations where PT did help which involved head movements. I am sure you know all about this but just wondering why certain PT groups ruled out being of any help at all to you. I am sure it must be to the severity but it seems worth giving it a try. Sorry if this seems tiresome. I can only imagine how you feel and the fact that you are able to communicate here so well is impressive.
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