October Chit/Chat

[Virginia]

I have dominated the first number of post on this forum all day. I was so glad to see Ikoiko and Funnylegs4 post so my name would not be the only one showing when someone came on.

It was a very wasted day for me today. The painters were coming yesterday to stain my deck and they did come yesterday morning. I had chosen a stain from a chart and instead of a nice red wood it looked very bright and orange. It had rained and the deck was still too wet to stain it. I thought they were coming back today so I got up early and got dressed, even put on a little make-up, then decided I just could not live with an orange looking deck so I called the painter and told him that I just simply needed another color. He said he was at a storage of some kind and would stop by Sherwin Williams and get another chart. So thinking he meant he would come on over after leaving the storage area I just waited and waited. I wanted to vacuum the floor but really couldn't do anything because I was afraid I would not hear the doorbell. I still thought he would come this afternoon, so I set and waited all afternoon. I didn't see or hear from him.

Also, the painter that my brother told me about who does inside painting still did not call me today.

The day was a waste of good make-up. However, when I passed a mirror I was glad I had it on. Now I have to go wash it off.

Hope all of you are well, and have had a good day and evening.

[agate]

Virginia, sometimes those color charts are really deceptive. What looks good in a little square on a chart looks very different when it's actually brushed or rolled out over a large surface. I hope you can get a more satisfactory color for the stain.

I'm sorry I haven't had anything to say. I've been busy getting ready for a visit from my son and grandson tomorrow. It was arranged only a day or so ago, and I haven't had a lot of time to do things I needed to do.Yesterday and today I've been trying to catch up on the childproofing and decluttering around here.

It's a shame about the dwindling number of people taking part here. And yet every time I think of someone I could tell about the BrainTalk board, I don't mention it because I'm not sure that the person would fit in here, and it could be disastrous with such a small group of people. I wonder if others here are hesitant about inviting people too?

So this is no way to draw people here. We need to think of other ways. I think that Sunshine's idea of inserting tags into our threads when we start them so that they will come up in Google searches is a good one. I wish I could remember to do that more often.

I have remembered it later on sometimes but it was too late to go back and insert those tags.

[agate]

It's a shame about the dwindling number of people taking part here. And yet every time I think of someone I could tell about the BrainTalk board, I don't mention it because I'm not sure that the person would fit in here, and it could be disastrous with such a small group of people. I wonder if others here are hesitant about inviting people too?

Reading this over, I wonder if it's understandable. I was thinking of a time a couple of years ago when a long-time member invited a friend here, and that new person immediately disliked some of the material she found here and left. Out of loyalty to that friend, apparently, the long-time member left as well. So because of a clash of views, this board lost not just one person but two. And a couple of others were alienated by the experience to the point where their attendance dropped off.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Virginia ~

How many items do you purchase that you require 19 bags?! Did you leave anything on the shelves for the other shoppers? Do you only have one or two items in each bag?

I worry about you climbing up and down your steps with all those bags. That would do me in, after standing and pushing a cart around a store long enough to get all those items.

Your painter could pick up a couple of tins of colors you might think you'd like to try them out in a small patch on your deck. That saves spending money on a full can of a color you don't want. Perhaps you could ask the painter to do that, rather than choosing solely from a color pallet.

The day was a waste of good make-up.

Thank you for the chuckle! I used to be so fastidious with makeup, hair, nails. Now, with a mask, half of my face is covered; I wear gloves so no one sees my nails, and my hair is what it is. Every grey hair, every wrinkle, every bent part of my body I wear like a badge of honor. I earned them, all of them.

Now that you've confessed, I hope that you are taking your BP regularly again, and charting it, because that is important information for your doctor. The time of day, whether you'd eaten, exercised, were tired, etc. I hope you can find a way to make an appointment with your doctor's nurse.

agate ~

I hope you had a lovely day with your son and grandson. I look forward to hearing about your visit.

I'm not sure whether I recall the situation you mentioned about members leaving.

Nonetheless, I've watched our membership decline through the years on all of our forums, and they weren't all associated with a dispute or differences of opinions/ideas. Some just left for whatever their reasons in droves, it seems. Facebook was a big factor.

While Child Neurology had some issues in the years, when our membership was in the thousands, we always worked it out. Those members didn't leave because of any dispute. They just moved on to another place or didn't feel the need to stay here.

Life gets busy and complicated, and a forum may just be more than people can manage. Facebook messages can be just a few words. This is a "discussion" forum.

Some people may be unwilling to wade through long posts, like mine. They are used to shorter comments on other platforms, like Twitter and Instagram, etc. We are never going to appeal to those people.

Conversation in today's world includes texting, tweeting, Facebook, and the use of LOL instead of Laugh Out Loud and emoticons instead of words.

We are not going to appeal to that demographic, no matter how many bells and whistles we put on BT. We are "Old School."

Remember the Dial Up tone in the early days of the internet? Well, there is a generation, which has never heard it. They also don't know what a rotary dial telephone is. Or what a phone without apps is.

We can't compete with that here, so unfortunately, drawing in new members with tags etc. may not work.

All that we can do is be here, when a member returns or posts for the first time and offer our best support and care to that person.

We are a candle in the window and a light on the porch.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[agate]

That's perfect: "We are a candle in the window and a light on the porch."

I agree that the lure of the new era of social media is irresistible for many, but it's unfortunate in many ways. Intelligent discourse is apt to disappear while people just react with raw emotional responses, summed up in an emoji or two. No time or patience for reading a message with more than a certain number of characters in it--for shame.

Isn't this a couple of rungs down on the evolutionary ladder? The next rung down might be simple grunts and growls.

I'm going to be rehearsing my snarl.

[Virginia]

Rose, I still didn't get everything that I needed at the grocery.....so, after getting my hair done today I went back and got five more bags. Actually, I didn't ask that it be done, but this store did fill the bags less than the other store did. I went for a very specific reason. The weather is turning cool here later this week. I just made vegetable soup since I went last Thursday and the latter part of this week I thought maybe I would want to make some potato soup. That takes six items and of course as I walked by I picked up a few more things. Snacks and almond milk and stuff like that. I got a salad, but it wasn't good so I fixed a sandwich. Also, I got a 92oz jug of washing detergent and some bathroom cleaning supplies, but this was in with last Thursday's.

Wednesday I go to the Dentist and tomorrow Laura is due to come. That is it for me this week.

You must have more access to painters than I do. When you are talking about them bringing me small containers of paint I just laugh - I can't even get them to call me. The two gallons that I don't want are still sitting on my deck and I haven't seen hide nor hare of those painters since. My brother gave me the name and telephone number of a painter to call that had worked on Grayson's house before he sold it. He had called the painter and he told him he would get by to give me a quote last week and do the work next month. I called him and left a message last Friday night and I haven't heard from him.

Today my hairdresser told me they were so booked up (she and her husband are having or trying to have work done on their house) and she says you just can't get them to come or call or anything else around here. I think that pretty much applies to everything. I think I mentioned that I also want to get my fireplace painted a soft white, it is brick color now. I spent a long time looking at some on the internet and I really want to do it, but I want someone who is really good before they begin to tackle that. It would not be like just going back over a wall.

Okay Agate, time to tell about William. I thought about you Sunday and I hoped that you were feeling really good and able to enjoy him. We could stand some pictures around here if you took any. I wish I knew how to post them because I have lots. I got 11 more yesterday of "Mr. Personality". Sometime I honestly believe that little boy has already learned to play to the camera, and he is not even 4 mos old. Although he does seem good natured in general and smiles at everyone and everything. They say the only time he cries is when he needs or wants something and then they have to figure out what it is and that's all it takes to satisfy him.

I was thinking about our loosing so many members and other than the things that you and Rose mentioned there is also the fact that we have lost 3 very longtime members to death, Nuthatch,
Peg and Cat. I really think it is more, but these were 3 we could pretty much count on to be here. Then there is the fact that Jeanie is in a nursing home and DAR and Renee are in rehabs, so if
you count it up you can see where a lot of our members have gone. Not all have left us because they wanted to or to go somewhere else. These would have been here for as long as they could.

Well, today was not a complete waste of my makeup. I very carefully made up my face and then covered half of it with a mask. So now it is time for me to go wash my whole face even though only half showed.

[agate]

Virginia, as someone who has a house, you probably have to buy quite a lot of general maintenance items, and you buy them all at the same store if you possibly can, and that would account for some of the 19 bags of groceries. Or maybe you like to stock up on some things to make sure you're not going to run out. I stock up somewhat myself for that reason and would probably do more of it if space permitted. Also there's a lot to be said for having a wide variety of food on hand to choose from, and if you're not up to cooking one thing, you can pick something that is easier to cook. I do a lot of that too--keeping a variety of choices around here, just in case. There are days when there's not much time to toast a muffin for breakfast, and so I keep some breakfast bars on hand, as well as some milk and several kinds of cereal.

I wish I'd taken photos of the grandson's visit but somehow that didn't happen. Maybe next time I'll have figured out the camera on the phone better.

I've thought that he might be playing to an audience at times too! This kid knows when he's being cute. But that's all right as long as he doesn't get carried away with the idea and decide he's cut out for a career in show biz at an early age.


He asked me if he could crawl under my desk. This is such progress! In the past he's just gone ahead and tried to crawl under my desk--never mind asking. When I said it wouldn't be a good idea, he wanted to know why. (That's where all of the cords to the modem/phone/printer/PC reside. I knew he'd think of them as interesting toys.)

He's now at an age where a person can talk with him. On previous visits I haven't been able to hear him at all but this time, thanks to those gold-plated hearing aids, I did hear him, and it was really amazing.

[Virginia]

Oh Agate, your Sunday sounds like it was wonderful. I have a feeling that William is just full of himself and very bright. He's a little boy so naturally he wants to play with all those interesting things that live under your desk. That's one of the things that little boys do. I am so glad you had your new hearing aids so you could hear him well. Sounds like money well spent to me. I don't know what kind of phone you have but you could probably do a google search and find out how to take pictures with it. Also, you might find it on U-tube.

Yes, that is what I do about groceries. I try to stock up and I do have quite a lot of stuff that I buy to try and keep the house in half way good order. Speaking of which, Laura was here today. She did just so, so. I still have to to vacuum, but she got me by for another week or so.

Rose, so sorry but we got part of your scheduled rain last night. It thundered and a lot of lightning and rain. I saw on the news that it was coming from out West. Sorry to take it away from you. I think you need more than I do.

[Virginia]

It is that time of year again when I freak out and get all upset about my medicine. My insurance has gone up so much. Without that one medication it would be only a little more than a fourth of what it is. HealthwellFoundation and PANFoundation both say their multiple sclerosis fund is closed. So.....here I go again.

I played around with this trying to find out a route I could go, that might be better for me, for about two hours. I didn't have any luck, but I am still hoping that later, closer to the end of the year that something will open up. I received a letter from The Assistance Fund either last year or earlier this year saying that they could no longer be of help due to a lack of donations.

There is nothing much on TV. They have those Christmas shows on Hallmark Channel and I am not big on them. Also, I miss The Golden Girls which was on from 10PM until 1AM. I wonder if the Christmas shows are going to be on from now until Christmas. Hope not.

[agate]

Virginia, I'm so sorry funding is drying up for your MS treatment! I believe it's Rebif? If it is, I'm sure you've already been to their Website and consulted one of their Financial Support Specialists and looked into their MS Lifelines? I thought that most of those costly MS drugs had some forms of financial aid set up but I'm not sure how much financial aid is being offered now. It sounds as if things aren't going well.

There is talk among the MS experts of phasing out the early MS drugs (the injectables) and putting everyone on the "higher efficacy" treatments like Ocrevus. That may be one reason you're finding it hard to get financial aid. Maybe the drug companies have some inside information letting them know that these drugs are on their way out.

I imagine they will still be available for those of us still on them but we'll get less and less help of any kind. It's a gloomy thought, and I hope I'm wrong about this.

[Virginia]

Agate, I hope you are wrong for the sake of a lot of people including you and I. I can't go on one the higher efficacy drugs because of my age. Healthwell Foundation and PAN both say Multiple Sclerosis fund is closed, but I am hoping that they will be able to reopen them by the end of the year. If not, I will be staying on the line to MS Lifelines. They should help me considering the number of years I have been very faithful to their drug. I just hate to pay the part d insurance which is going up so much if I am not going to be able to use it through one of the Foundations. If the drug company helps, the insurance is no good. I could get a much cheaper one to take care of my other drugs. But I have to know by December and I doubt that I will.


Well, I went to the Dentist today. Had a really nice very long conversation with a lady that works in the front office. I have been with that Dentist office since the 70s, so I pretty much know all the people. I am on my third Dentist. I liked my first one the best, but he died of complications from MS. He had sold the business and I just stayed on, not knowing if maybe he was getting something out of it. Now, the son-in-law of the second Dentist is in there, so he works with his Father-in-law. It was a very pretty day outside and I enjoyed getting out, but it didn't help my MS any.

I also stopped by the grocery store. I realized I had not gotten any cereal in my past trips and I didn't want to run out. I also picked up two more items I wanted. They were out of another item, but I will keep that in mind when I go out next week for my flu shot. I am seeing more and more partially empty shelves. The groceries go higher and higher and the shelves are getting empty, or else they don't have enough workers to stock them. I hope it is the latter because at some point I have to think that people will return to work. How else can they keep living?

Then I stopped by Chic-Fil-A and got a salad for dinner tonight.

Everyone have a good evening.

[agate]

Virginia, I believe that the idea is to allow everyone who is already on one of the older injectable drugs to stay on them but to make sure that anyone starting on an MS drug for the first time or switching drugs is steered towards one of the "higher efficacy" drugs. They're saying that the drugs do their best work when they hit MS in the early stages, before it gets a foothold, and that the stronger the drug, the better.

Not everyone agrees with this notion but it's one that is floating around just now and seems fairly popular.

[Virginia]

Don't know if this applies to anyone on here or not, but thought I would mention it. I was reading in the AARP Bulletin that came out a couple of weeks or so ago and found that as of this month (October) SNAP is now paying $250.00 per person for food for anyone that qualifies.

I thought that was good. It must have gone up considerably. From grocery store prices that I am seeing jump I guess it needed to.

I decided to post this in case anyone qualifies.

[stillstANNding]

I wanted to give you an update on our 96 year old mothers:

Peter’s mom fell ( she said she over- reached and fell off the couch). She was on the floor for hours - hard to tell how many. It made me think of our Sally. She managed to crawl to where she could bang on the radiator and eventually summon the tenant. Anyway, she’s in the hospital since Tuesday. Nothing is broken but muscle bruising and a UTI. She has not recovered and is going to rehab tomorrow. It’s a good place so we are hopeful.

My mom is good. The nurse that mom’s cleaning lady knows did go to mom’s today and give her a Moderna booster. She filled in her card and stayed for thirty minutes to make sure she was OK. My brother and his wife will be there the second week of November.

Peter and I are OK - average like most people.

Stay well,
ANN

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

ANN ~

I'm so sorry that Peter's mom fell. I gather that she didn't have an alert button or a phone near her. Thankfully, she has no broken bones, but at her age, bruising and a UTI must be painful. That's wonderful that she has a good rehab facility. Prayers on the way that she recovers fully and swiftly.

My maternal grandmother fell out of bed at 10 p.m. and was on the floor, until I called her the next day at 3:30 p.m. She had pneumonia. She was 92.

I'm glad that your mom didn't have to leave her home to get her booster. I hope that she has a nice visit with your brother and sister-in-law.

These days being "average" is a good thing.

Virginia ~

What a nightmare about your Rebif! Where is the humanity in this world?! You can't just stop taking Rebif suddenly (I would presume), and then you would have to consult your neuro about the best "higher efficacy" drug to replace it. You know how you respond to Rebif, but a new drug would be unknown to your system.

I'm sending you prayers and positive energy that this is resolved soon for you. It's just another source of stress, which you don't need. It's a shame that drug companies don't think about the affect of these changes on the people taking their pharmaceuticals. Also, the prices are unbelievable. Unfortunately, Congress eliminated reducing drug prices from their bill.

However, care for Seniors, including in home care, is in the bill. If they can do that, why can't they reduce drug prices, since Seniors consume the largest quantity of drugs in the population?

One infusion of Opdivo, the immunotherapy drug given to Jim, cost $9,000. That was the cost of the drug, which did not include the administration of it in the Cancer Center.

It's not in the bill, because Big Pharma has many lobbyists, with a truckload of political donation money.

Hope you enjoyed your salad and had a better day today.

agate ~

Generally speaking, physicians are inclined to consider newer medications for many conditions with hope of achieving success.

Every time a new seizure med came on the market, my boys' neuros would suggest giving it to them. After several very scary issues with newer meds, including one nearly fatal one for Michael on Klonopin, I decided to stick with what we knew.

Opdivo was new, when Jim was diagnosed, and his first oncologist was reluctant to give it to him. She finally capitulated, and after his first dose, his tumor shrunk in half! But it caused a horrible RA flare and steroids, so she refused to give it to him again. Instead, she gave Jim old line chemo drugs, one of which caused cancer on Jim's skull. When Jim changed oncologists, he was put on Opdivo again, with daily steroids to avoid an RA flare. It worked well for a year, until his WBC tanked.

Taking medications can be like throwing a dart in a dark room while wearing a blindfold. You just hope that your dart lands somewhere on the board.

Prayers, positive, healing energy for all ~ these are trying times ~ then again, when were the times not trying?

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!