OT October Chit Chat

[agate]

Great minds must run in the same channels...

This package was a better (brighter) fluorescent light for the bedroom since it gets very dark in there in winter, and the violets seem to need more light. So I ordered this up just as the days were getting shorter and darker. Now it looks brighter and warmer in there.

UPS lets you know about packages too. But when you may not know a package has actually been delivered until many hours afterwards. That's what happened yesterday. I was here all the while and would have buzzed the delivery person in but they didn't bother to ring me. Hours after the neighbor told me about the package I had an e-mail telling me it had been delivered.

If I hadn't had honest neighbors, I might not have got that package.

[Cat Dancer]

I wish the delivery guys would at least ring the bell! We've had packages get rained on, or snowed on, because we didn't hear the truck. I don't worry about them getting stolen ..we live well off any travelled road ... but it's difficult for me in my wheelchair to get packages off the porch if TC's not here, and then they get ruined.... ugh.

[Earth Mother 2 Angels]

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

Virginia ~ I'm so sorry that your meditation group friend passed. I hope he did not suffer. He sounds like such a lovely person, who let his Light shine while he was here. May you and all of his friends find comfort in knowing that he is resting in peace now.

Receiving Packages Suggestion:

On the day you're expecting delivery, first thing in the morning, tape or tack a note on your front door: "UPS Driver: Please ring bell or knock. Thanks." Then, when you open your door, tell the driver that you need him/her to always ring or knock, because you can't be watching for them all of the time. And let them know that you might be a bit slower in answering the door than a youngster and to be patient and wait for you.

When you order on line, some sites have a space for "special instructions." Type in there, "Please ring bell or knock and wait."

You might also call UPS, Fed Ex, or whatever delivery service is being used and ask if a note can be attached permanently to your address for all deliveries instructing the driver to ring or knock and wait. I don't know whether they do this, but it's worth a try.

We have the opposite situation, and we have to look for deliveries. We have a note on our door, which reads: "Please do not knock. Residents are sleeping. Thank you."

That's because often Jim or Jon are sleeping during the day. This is also to discourage solicitors. Our doorbell was disconnected years ago, because its ringer is located in our family room, which became Michael's room. We also had a cocker spaniel, who barked when she heard the doorbell.

Illumination During Power Outages Suggestion:

LED candles are fairly inexpensive and are an excellent alternative to wax candles:

Only registered and activated users can see links., Click Here To Register...

Also, keep a flashlight in your bedroom near the bed, and one in your living room or kitchen. Make sure you have extra batteries on hand.

Another safety tip: have a fire extinguisher in your home.

Oh, and a supply of bottled water.

Love & Light,

Rose

[Cherie]

I know it has been a long time but I am checking up on all of you and it has taken me nearly half an hour to catch up on this thread alone. Had my 8th Rituxan infusion this week. First 4 were each nearly a year apart but the last 4 have been on schedule. I am actually feeling like it is calming things down now. Last relapse was March 2016.

I am staying busy with speaking engagements and meetings for Patient Powered Research organizations. Off to Kansas City in the morning as I will be the Keynote Engagement Speaker at the Greater Plains Collaborative Health Systems annual Conference. Off to DC from there for another meeting. I will be back in DC from the 30th of Oct thru the 2nd of Nov then in Newburgh, NY to do a program for the MS Foundation. Back to DC for another meeting the week after Thanksgiving.

Sounds like most of you were kept safe from floods, hurricanes, fires. We fared well here although the MS Cruise for a Cause (I was on faculty) was cancelled as Irma was coming in along the path we were to go out on.

Watched a good movie on Amazon this evening. "If I Were You" with Marcia Gaye Hardin. 4.5 our of 5 stars rating and well worth it! Watch the trailer and if it looks interesting, bring it up.

[agate]

Nice to hear from you, Cherie, and you do seem to have been busy! Congratulations on being selected to advocate on behalf of those with MS and on being willing and able to do the presentations and lectures and public appearances.

[Sunshine]

Welcome home Cherie. Just the other day I was wondering how you're doing,. Sounds like you're busy as ever and stable.

[Cherie]

I am doing pretty well. I thought a year ago that I was going on Lemtrada as I had tried just about everything else and was still progressing. My doc was nervous about it because of the high dose Cytoxan and the high likelihood of blood cancers with that history. Two more "2nd opinions" got the same input. Meanwhile I had been off Rituxan for 11 months to try and let B cells repopulate and off Rebif for 6 months because I could not afford the high co-pay with Medicare part D. Once I went back on the Rituxan on an every 6 month schedule, things started settling down and it felt like the slope was not so slippery. I have had 4 infusions since finding out that I could not get Lemtrada and it seems to be treating me well (same med as Ocrevus and made by same company but mouse model of the antibody rather than human as Ocrevus is).

[Sunshine]

Ah. Lazarus also takes Rituxan. Could be in my future if the IVIG NO longer helps. Am glad you've stabilized. You do good work for MS patients!

[Howie]

A cloudy rainy day, so I was just a slug all day. I tried to nap twice, one attempt was lying in bed for over a hour, but no sleep. I did go to the store this morning, but bought only a few things to last me until Friday, then I'll do some real shopping.

I think I'm done with the AC for this year. I got by today with just a fan, and it may be all I need from now on. After all, it is Fall now, and Santa is just around the corner.

Sam and I are watching TV from the bed, and she looks pretty sleepy herself. I would go ahead and take my sleep med, but look at the time, it's not even nine yet. My sleep schedule is all messed up again.

I don't care about having normal times, but it goes from no sleep for a day, then 9pm bedtime, then 5am bedtime. Any is fine with me, but I just want to stick with one or the other.

Everyone have a good evening, and sleep if that's normal for you.

[Virginia]

Howie, unfortunately it is not very normal for me. Do you let Sam watch her special TV shows, even if it interferes with yours?

[Pegakafarmgirl]

Sam has her own TV,, she tells me,,maybe she thinks she does,,

spent the day wrapping deer meat,,{loins steaks and deer pattys},, Joe got a decent buck,, we have a butcher shop, and process deer, beef ,hog,, so it was just Joe and me and Sam,, I enjoyed it,,

Weather is pretty warm, for October in Iowa,, farmers are out getting crops out,, ours will be the end of the week

later

[Howie]

Yeah, Sam has her own TV. She has her shows, and I have mine, and each having their own TV stopped a bunch of fussing and fighting.

[Jeanie Z]

:) Does anyone hear from Laura (LaCeli) from Leafwatchers? Her birthday was yesterday. The email address I had for her no longer works.

My friend in the nursing home saw the eye doctor yesterday and will get her glasses within two weeks. Then she should be able to have the Hoveround. She uses a big oxygen tank 24/7 and I hope they have something that can go on the chair to carry it.

I just got up and I am so tired I could go back to bed. I need to grocery shop as I am out of several things. I will get dressed and after Andy comes to do the trash I will go to the store. Have a good day everyone. Jeanie :)

[Virginia]

My toilet has been running for a long time. About every half hour or so it would sound like it had been flushed. I have had high water bills. Yesterday the lady that works for me came by and said she had talked to a plumber and he said all she needed to do was take the old flapper off and take it to Home Depot and get one like it and put it on. That a new one would stop it. Well, she did and then it started running all the time, so I called a Plumber out today and something had been cracked in it. He was going to have to change everything in it, so I just told him to give me a quote on a new one. One of the higher elongated ones. He just left and is going to call and tell me the price.

Always something, but that is just life. I wasn't planning on this much this month, but that is just the way it is. Like Jeanie with her van.

It is so cool in my house today. It looks pretty outside, but very cool inside. I have seen some people walking with sweaters on so it may be a little cool outside also.

Jeanie, I do hope your friend can use the Hoveround. You are so good to get that for her. I hope you get to feeling better as far as the fatigue is concerned. I think the cool weather helps mine some.

Peg, I assume you are saying your Sam has her own TV also. I figured Howie's Sam did, which he confirmed. Good thing because they would fighting like cats and dogs.

[Virginia]

Well, I just wised up and looked and it is 62 degrees outside. I turned on the gas logs for first time last night. I will certainly have them again tonight. Yea!