July chit-chat

[Virginia]

Good night Howie! I am tired and sleepy so think I better get ready for bed. Maybe you are already there after staying up last night.

[Howie]

Good night Virginia. I'm still undecided if I want to watch the last Outer Limits on tonight. But that never stopped me before. I've seen them all MANY times!

[agate]

...

Have we heard from Suze-Q lately?

The hens here might have to scratch around when SuzE-Q is missing. All I know is that her last post was on July 6. Hope she'll check in soon.

[Howie]

And I know from personnel experience, you can't escape from these hens.

[agate]

There was a recent poll of the thousands of people here, soliciting their opinions on the hens:

"Feels like Big Brother," one person was heard to grumble.

"I don't do Caring," said another.

"Hens are messy little loudmouths who serve no useful purpose," another chimed in, adding sullenly, "They should mind their own business and get on with whatever it is they're supposed to be doing."

-------
The above story isn't true. Any resemblance to persons or hens in real life is purely coincidental.

[Jeanie Z]

:) Cherie I hope you get better soon. I hate feeling lousy.

Yesterday I called the insurance company. My upfront money is $6700, I told them I had paid $7305. for aides and could send them statements. They said I already had paid $6359.41 toward that when in rehab. No wonder my saving is gone.

I also got a letter from them saying my PCP is no longer on their plan. They are going to check why and get back to me. They called the surgeon and got another 6 week PT order and had it faxed to the company treating me. Today I got a call wanting to discharge me from PT. I told them no and to check yesterday's orders.

Today Andy came and I went to the van on my house scooter, locked it to the chain and got in the driver's seat. I drove to Publix and we shopped and back home. It was harder than I expected and I am not ready to try it by myself. I want so badly to go on my own but I need to be patient. Jeanie :)

[agate]

Sounds as if you're almost there, Jeanie! Think back to where you were a while back--you've come a very long way, seems to me. And it was an uphill battle, what with some goofups that weren't your fault as I recall.

[Cherie]

The NP spent 40 minutes with me yesterday late yesterday and I came away with a script for Diflucan to treat the yeast from the antibiotics and a low dose of an add on med to lower blood sugar. She wants another update within the week as to both yeast and blood sugars. I really felt listened to and cared for. Spent most of the day in the infusion center with David today. They called while I was in Milwaukee and said they needed me today to sign a new consent form. This trial is working so well on tau in supranuclear palsy and people on it are showing improvement that they now have 500 people who are on the drug across both diseases and have extended the trial another three years. In 10 months we were supposed to end the trial and find out if he was on placebo or one of the two doses of study med. Today they told us it would not be unblinded for another 46 months but that after his 20th dose he would automatically go to study med if he was on placebo. This is, I think, good news.

[Virginia]

Cherie, you sent me on a viral trip to look up tau in supranuclear palsy. It does sound like it is good news that David will get the real medicine for sure after 20th dose assuming he is not already on it. Glad you are getting the treatment you need. I hope it all works for good. I can't remember when your next trip is, but you gotta be ready physically.

Jeanie, you are doing so well. You definitely will have to be a little patient. I was surprised to know that even with Andy along that you drove and did all that you did. You are a strong lady and strong minded. Sorry you are going through your savings. I assume that $6700 was what you went over when in rehab because I thought that was pretty much covered by Medicare and Medicare supplement. Maybe not though. Thankfully, I have not had to use that part yet. I hope that I don't, especially knowing what you went through while in there.

Agate, not sure about all the hens being so messy. I think we've done some pretty good scratching around when Howie goes missing, a few others too. However, for Suze-Q we might try to solicit the help of a certain rooster. I do wish she would check in, she is overdue.

I went to get my nails done. I walked in a little before 3 this afternoon and I was told my appointment was at 4. It was. She told me when I went last time, so that is definitely on me. I only live about 5 minutes from the nail salon. I went by and dropped off a card at the P.O. and then came home, got mail and paid a bill on line. I went back at 4. I had planned to go to grocery store today, but it was just way too hot. The weather app on my phone was 94 degrees, the temp at the same time on my computer was 98. I saw the local news tonight and the 98 was right. We are not to have any relief from the heat until at least next Tuesday when it might be in the 80s. I didn't go to the grocery store. If I can't go Sunday after I eat with family I will use instacart. Today was just too hot for well people to be out and I am not well.

Jeanie, did Andy cool the van before you got in it?

[nuthatch]

I keep seeing on the news about the terrible heat that is sweeping the nation. Hope everyone is keeping cool and that there are no power outages. Oddly, it has cooled down here. Barely made it to 70 today.

Cherie, how often does David get infused and how many doses (placebo or otherwise) has he already received? Hope that it helps him.

[Sunshine]

I will return to study this thread as so much has happened in our little group...
For self, IVIG happened on Thursday. I had a big spasm at 3Pm, had to take IV ativan for it and restart , that was on top of the 2 ativan pills that day, and one an hour after the IV ativan (Should’ve skipped that 3rd pill as advised to skip it by RN was too drowsy by nighttime,hard to awaken). Finished it, went home. That night at 5am awoke with a bad, bad ankle spasm that wouldn’t stop. DH did rectal Valium.

Doc said he is fine with cutting back to monthly instead of alternate week IVIG in light of these IVIG driven spasms which he finds curious since the drug is supposed to counteract MS and SPS...

It had been 6 weeks past last IVIG and I wonder if that was a factor. Don’t know.

NOw am trying to line up home health for monthly infusion. ITs a pain to work with their scheduling....

Meanwhile, Quest has not fixed their rest room. Went Friday to give urine sample to r/0 UTI— still no grab bar. Pissed. So, I emailed corporate quest. I got an immediate reply from corporate quest, since I said I would contact the ADA and issue a complaint. Was just typing out the complaint.

They were apologetic. I was polite, and firm and said that in two weeks if it wasn’t fixed I would indeed complain to ADA. They said they would fix it and call me back when it was fixed.

They thanked me for being patient and polite. I said, I am thin and was able to use my walker to get around the bad situation, barely. But that a fat person would surely fall and maybe break a hip and maybe die from a broken hip. They undrstood the seriousness of it. LEts see what happens.

I channeled my best Rose, kind, but intelligent and firm.

[Jeanie Z]

:) Cherie glad David is working out well. Also that your problems are being addressed.

Virginia my van is under the carport in the shade, so it does not get real hot. When I parked at Publix I left two windows cracked and put up a sunscreen. I like the idea of acting like Rose and I need to do that with these people I deal with.

Today I made Gaspacho soup in my Bullet. It was good. Yesterday I made a mango banana smoothie. We do not have as many mangoes as last year and many are too high to get. Andy has put some in the freezer and I sill have a few bags from last year.

No word from the people about PT. I only had it twice this week. They are so annoying to deal with. It is nap time again. Jeanie :)

[Cherie]

I keep seeing on the news about the terrible heat that is sweeping the nation. Hope everyone is keeping cool and that there are no power outages. Oddly, it has cooled down here. Barely made it to 70 today.

Cherie, how often does David get infused and how many doses (placebo or otherwise) has he already received? Hope that it helps him.

Every 4 weeks for 20 doses (initially). The study has three arms: 1 placebo, one low dose and one high dose. He is one of those but we do not know which and he is having virtually NO side effects so we assume he is in the placebo arm. He has had 10 infusions so far and another 10 to go before the LTE (long term extension) goes into effect where if he is on placebo , he will start receiving the lower of the two doses being tested for the following 36 months(infusions) without knowing what he is actually on.

[Cherie]

So uncomfortably hot today. 98 mid afternoon. We have a couple of window A/Cs. The one in my office is nearly 40 years old and was "reconditioned " when we bought it in 1979. The one in our bedroom was being thrown away by a client when they moved 10 years ago and the one we put in the living room this year for the first time was another throw away by a client of his. We bought one A/C from Sears 7 years ago and it was dead by the next season a week after the warranty ran out but these oldies are holding up pretty well.

I literally feel like I am living in a bubble and a haze. No energy and low cognitive function. I feel like I am so out of it it is not funny. David says no one would notice that does not know me but that is small comfort. I think I am not tolerating the new med for blood sugar. I itch everywhere and blood sugars are going up. It is a "sulfonylurea" to be used with caution in those allergic to sulfa drugs (me). I will take Sunday's dose then call in Monday morning for direction.

[Earth Mother 2 Angels]

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

Jeanie ~

That's amazing that you can drive your van! What progress you have made since this all began in February. But, yes, please be patient and don't rush anything. We don't want you to have a setback.

It sounds like you may need to make a couple of phone calls on Monday to sort out your PT. I truly understand your frustration and send you my empathy. Channel your "inner Rose" and go get 'em!

A mango banana smoothie ~ refreshing, healthy and delicious! I hope you can make lots of healthy meals with your Bullet.

Cherie ~

How many more infusions does David need to reach 20? It's great that this drug is working on tau in supranuclear palsy (I also had to look that up!), and I'm praying for the same success for David.

Praying too that your new meds will work to make you feel better. Yeast can be a miserable thing.

Sunshine ~

It is curious that you had spasms from the IVIg infusion, if that's atypical. I wonder along with you if the length of time between infusions had any connection. I pray that you will have good results from it.

You flatter me and made me laugh, thank you. Channeling me, oh my! I'm just so very grateful that I can be here and share my experiences with the hope that they will be helpful.

I spent nearly 50 years fighting for everything that my sons needed. I learned how to negotiate and to make demands, where they are warranted and justified. Always put your ducks in a row first, then you have all you need to move forward.

Perfect that you told Quest you were filling out an ADA complaint form! They know you mean business. More than once, I've said, "I will consult with my lawyer about this." That always gets immediate attention. It helps if you have a lawyer, which I did, but even if you don't, you can always find one.

Keep in mind that these people are working for you, because they are being paid to serve you. You are the boss. You're even the boss of your physician. It's your body, and you have rights.

A medical facility, which Quest is, which is violating federal law, needs to get a comeuppance.

Jonathan's segregated Special Ed high school, which was set off of the main high school campus, did not have a handicapped parking space. I transported my boys to/from school frequently, due to busing issues, and finally, I went to the principal and said,"Why don't you have a handicapped parking space? At least one, but you should have three. How long have you been getting away with violating the law? I'll be calling the district about this, when we get home."

By the end of the week, there were two designated handicapped parking spaces.

If we don't speak up, if we don't complain, if we don't pursue what we need for our safety and well being, as well as that of others, then nothing will ever change.

At the end of our street, there was no w/c cutout, when we moved here 42 years ago. Ironic, isn't it, when Jon and Michael had w/c's? I fought the City and the Homeowner's Assocation, neither of which would bend, saying the other was responsible, for years. I quoted laws, threatened a lawyer, nothing. I had to give up to fight for other things.

A few years ago, that curb was retrofitted with a cutout. On my morning walk, my neighbor commented, "Well, they finally heard you 35 years later."

I said, "Yes, and one of my sons has passed, and my other son isn't able to go out in his chair any longer. Talk about bittersweet."

Just think of the hundreds of patients you have helped by complaining about that grab bar. Everything we do to help ourselves also helps others.

TO ALL WHO ARE SUFFERING IN THIS HEAT

I agree with agate's cautioning.

I hope that you will stay inside with your a/c, unless you absolutely need to go out. If something can wait, then let it wait until cooler weather comes through. I think of it the same way as any potentially disastrous weather change, like a blizzard, or a flood, or a hurricane, or a tornado warning. Don't venture out unless you must.

I'm praying for a break in the weather for you. I know we'll be in for a hot summer eventually, but we're blessed with cooler days now. And we absolutely respect and give thanks for them, because we can hit 110 in a couple of hours sometimes.

Sending healing prayers for all ~

Love & Light,



Rose