July chit-chat

[Sunshine]

Virginia, I buy my shower stool and shower chair at a medical supply store, They put it together. Maybe its a better quality?

[Jeanie Z]

:) I enjoyed the bird photos/ I am sorry y'all are having earthquakes. I experienced a 5.8 on the 13th floor of the Beverly Wiltshire hotel about 3 in the morning. I was asleep on my stomach and it was al I could do to stay on the bed. I'll take hurricanes any day over an earthquake. We get plenty of advance warning.

Praying for all of you. I spent the day in bed and am headed back there now. I called the aide I had to come Tuesday for three hours and help me get in the shower and out and to mop the floors. Jeanie :)

[Virginia]

Sunshine, when I get another shower stool I assure you it will be from a medical supply store, even if I have to have someone go get it for me. The one I am getting rid of has been sturdy and great. I have had it for almost 20 years, and it came from a medical supply store which is no longer open. They had it put together and I just walked in and got it.

Jeanie, you must be tired today if you are mainly spending the day in bed. Glad the fourth was good for you.

[Sunshine]

So, I did Ativan for two days in a row, and life was so much better on it with respect to walking and pain. Did not have to use MMJ at all, barely used the wheelchair, only used the Rollator to catch me just in case I spasmed while walking.

I will be off Ativan for child’s last visit today, because doc said only use it 3 or 4 times per week, and I want to save it in case i have a spasm this week...using it more can lead to developing tolerance (i.e. It would lose effectiveness), and lead to addiction with difficult withdrawal/ tapering down issues....

[Jeanie Z]

:) Virginia I am tired. It is a MS tired because I can hardly move.

Heading for a nap. Jeanie :)

[Lazarus]

Glad Nuthatch, Rose and your daughter are OK, Sunshine.

It’s hot and humid here with full sun. Thinking about Linda at a Farmer’s Market all day. I,be got MIL’s grocery shopping and lunch today.

I hope Cherie will check in.

ANN

Thanks for thinking of me at the farmers’ Market. It really was brutal. The forecast had been for clouds early and storms late so I thought I would be ok. By 7 am the sun was fiercely shining and there was not a cloud in sight.

I sold the vegetables I had brought and had great conversations with customers...plant sales were slow but I sold some. Then, around 11, I felt that I might be in trouble. So I started putting things in position to load. Thought I would do it slowly and leave half an hour early. Then someone turned the heat lamp on.

My vegetable sales being done I decided to pack up and leave even earlier. Did sort of ok until I was really having trouble. Brain had now skidded totally off its runway. A feisty customer came by and asked if she could help. No. People who help need instruction or they make things worse when I get home and have to unload.

But this woman quietly waited. Next time she asked I asked her to pour a bucket of water over me. And she did! then she helped put the last few things away. I got in the car, left the market and turned on the air conditioner. By the time I got home I had recovered enough to work for an hour putting plants back in greenhouses and even watering the most desperate plants in the greenhouses.

When I left the market my car’s temp. Read 97°. Humidity was 75%. 5 hours later we did get quite a bit of rain here on the farm. What a day. If I were not rigidly organized I would never have managed.

[agate]

Wow, Linda! That was truly brilliant--asking someone to pour a bucket of water over you. Have you tried that before?

Sometimes if I'm in a place where I'm going suddenly weak because I'm already tired and realizing that it's too hot, I'll fling open a window or two and just stay there taking in the cooler air for a while--that is, if the air outside is cooler. This trick doesn't work if the outside air is hot, of course.

That is so true about needing to explain to people. Just the effort of explaining can tire a person out and make the situation worse.

But a bucket of water sounds like an emergency measure that would work to snap you back in situations where there's no window to fling open.

I sometimes go to considerable effort to get a window open. Once on a van I couldn't get the window open but I kept on struggling with it for something like 10 minutes and finally figured out a way. I was starting to wonder if they had locked the windows shut just so people couldn't open them. I was really tired after all the effort of opening that window but it was well worth it.

You have a tent when you're at the farmer's market, I'm guessing, but the tent wouldn't help much if it was hot enough. And I don't know of any place much hotter than a hot car.

[Virginia]

Linda, what a day. I did not realize you only worked half a day at the Farmer's Market. However, in the hot weather like that I don't know how you made it that long. Glad you recuperated in the air conditioned car. Bless that lady. So sweet of her to notice that you were having a difficult time. I can understand about trying to tell someone about doing something, but especially when you are that hot and that out of it. Sounds like your brain gets like mine, but mine does it just getting tired. I don't even have to get hot. So glad all the vegetables sold quickly.

We have had a thunderstorm here, and it still looks like it is going to continue raining. I am getting ready to go meet brothers for food and go to the grocery store after that. I didn't think they would go because their dogs are afraid in thunder and they do not want to leave them, but one called and said it was not thundering where they live and they were planning to go. So off I go for now.

[stillstANNding]

Virginia, I’ m glad you’re going out to eat so you can report back.

Linda, it was a really bad MS weather day. So hot and humid. Our car said 101 when we left trader Joe’s Just after 3 yesterday. The dew point was 76!

Rose, please report in. And Cherie, too. Bless you both.

Yesterday at 5 PM we got heavy rains that lasted till bedtime. Dangerous to drive in but very welcome to bring down the heat and soak the garden.

Today we are enjoying lazing around the house and grazing. Nothing scheduled except “Endeavor” tonight on PBS.

Oh, and now that I have an iPad, I have downloaded the Kindle app and some Free Prime books. And I got some books from free 3 month Kindle Unlimited w Audible. I feel like I’ve caught up to the rest of you a bit.

ANN

[Lazarus]

Linda, what a day. I did not realize you only worked half a day at the Farmer's Market. However, in the hot weather like that I don't know how you made it that long. Glad you recuperated in the air conditioned car. Bless that lady. So sweet of her to notice that you were having a difficult time. I can understand about trying to tell someone about doing something, but especially when you are that hot and that out of it. Sounds like your brain gets like mine, but mine does it just getting tired. I don't even have to get hot. So glad all the vegetables sold quickly.

We have had a thunderstorm here, and it still looks like it is going to continue raining. I am getting ready to go meet brothers for food and go to the grocery store after that. I didn't think they would go because their dogs are afraid in thunder and they do not want to leave them, but one called and said it was not thundering where they live and they were planning to go. So off I go for now.

Thanks. It is not half a day. Farmers get to market around 6 am and leave at 1:30. I left at 12:17 because I have a spot that lets me leave the market without killing anyone! Actually the day before the market is usually a 12 hour day picking crops but until yesterday's rain we were in a drought...so there was not a lot to pick.

The woman who helped me is a regular customer who buys food to bring to a wonderful woman who is elderly and does not get out as often as she used to. THat woman is almost 100 and is well known advocate for peace and justice. I used to jokingly ask her how many times she had been arrested since I last saw her. The farmers market is definitely an interesting social experience for me.

[Sunshine]

Laz, that is a good story. That woman will remember you forever...

Off Ativan today, and it was bad day of awful pain. Nothing helped it. My youngest was there to see me burst into tears from pain. It is heartbreaking to see her see her mom in such pain. I think I tried to do more, I didn’t do my usual two hour rest etc....Still doing very poorl...

[Lazarus]

Laz, that is a good story. That woman will remember you forever...

Off Ativan today, and it was bad day of awful pain. Nothing helped it. My youngest was there to see me burst into tears from pain. It is heartbreaking to see her see her mom in such pain. I think I tried to do more, I didn’t do my usual two hour rest etc....Still doing very poorl...

For over 20 years I had lots of difficulties but nothing that was pain that shut me down.

Now I regularly have that MS Hug thing that is really painful. I am hoping to adjust to it and manage it better. I have a med that stops it but also put s me to sleep. Same thing with the esophagus spasms and leg spasms. Grrr. I hate having to get used to a bunch of new things. Your example teaches me a lot. Your drive is impressive. Your daughter sees a great role model.

[Virginia]

I am just sorry Sunshine that you have had to feel so bad during part of your daughter's visit, but I don't worry about her seeing it. I always remember what Meredith Vieira said about her husband Richard Cohen in relation to their children. She said in an interview that his MS had taught her children empathy and courage and to treat others better. She says they are better human beings for having been raised by a Dad who has MS.

Linda, after I wrote that it did dawn on me that you would have gotten there quite early - maybe not that early. Hope you are resting today since you and John have to go for cataract surgery tomorrow.

I have spasms, but I try not to say much about them because I am so thankful that I do not have them like Sunshine does. In the past several weeks they have gotten a little worse and every time I have one I think of Sunshine. Mine are mostly during the night and of course it interrupts my sleep and then I have a hard time getting back to sleep. I have spasms that grab the bottom of my left foot, one a few nights ago that hit behind my left knee where it bends and I have them in a muscle higher up in my left thigh. I use to have them worse, before I was on Rebif for quite awhile.

Ann, we went to a Tap Room tonight, so nothing exciting to report on other than I am mad with my two brothers. Do any of you have younger brothers who just do not let up with the teasing? Apparently, I hit something on my phone that sent pictures through to the two of them, one sister-in-law, and two youngest nephews. They said it was about midnight when they got the message. It was done by Face Time. I sent pictures of my living room, my foyer and one of my bedroom and one of my fireplace area. There were a couple or maybe 3 of me laughing. I was laughing because I couldn't get the camera to point in the direction I wanted it to go. It kept pointing at me. My youngest brother said one of his sons who is out of town called him and said Dad do you think Aunt (nick name) is alright? He said he told him yes, that I just didn't know what I was doing. I will never hear the last of this. I don't know if it really was midnight or not. I think you all can kind of see just a little of what I have to put up with. Howie, would never treat his older sister like this!!

[Earth Mother 2 Angels]

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

I'm sending healing prayers for all of you. I'm in awe of how you all cope with so many physical issues and just keep on keeping on with what needs to be done. You persevere, and that is praiseworthy and deserving of respect.

While I don't have MS, I can relate to your experiences with being overheated, to a much lesser degree. As temperatures on Earth continue to increase, I find that I can't tolerate temperatures over 88 degrees. The hotter it gets, the less clothing I wear, and the more I sweat. It's exhausting, so I can only try to imagine how it must be for all of you.

Laz ~

I'm so glad that the lady at the market poured a bucket of water over you. Would it help to carry a spray bottle of water to spritz on your face, arms, etc. during these hot days? I put cold water on a folded paper towel and slap it around my neck. That sometimes helps.

Prayers for John's cataract surgery. Jim had cataract surgery in 2016, before his cancer diagnosis. He did well, surprisingly. But I followed him around every few hours with different eye drops for a month. Things may have changed since then, but he had a steroid drop, antibiotic drop, and anti-inflammatory drop. Several times a day. And so many pre and post surgery doctor appointments.

Sunshine ~

It's always painful to watch the ones we love suffer, as we stand by helpless. This is what love is ~ sharing the pain, the joy, the happy, the sad, the good, the not so good.

It's probably important for your daughter to see you in pain, so that she has a greater awareness of your challenges. If they were somewhat masked by Ativan, now they've been revealed. She needs to know everything about you. You're her beloved, brave, incredible Mom. Now, when you share with her about what's happening with you, she will have a better, clearer understanding.

Ativan allowed you and your daughter to have time together. But, as you said, Ativan has limits in efficacy and dependency. You need it to work for you on a regular basis. So, give thanks now for the time you shared with your daughter, allow yourself time to recover, and return to your usual dosage.

You are a little out of rhythm now, but you'll get back into the groove soon. Praying for IVIg to be available for you soon.

Cherie ~

We are all thinking of and praying for you.

virginia and SuzE-Q ~

Glad you had your shingles vaccines and hoping for no adverse side effects.

ANN ~

Thank you for asking about us. We are making it through day by day.

While the Searles Valley area is having constant earthquakes from 2.5 to 4.5, we haven't felt any of them. If we lived in that area, we would be out of there. I cannot imagine living with the constant shaking every few minutes. We would have to figure out a place we could rent or hang out at someone's home not near the epicenter, because aftershocks just perpetuate the trauma.

Jeanie ~

The earthquake you experienced was pretty strong, so I do understand well your desire never to return to California. However, I have experienced tornadoes, and even with a warning, they are terrifying. I wouldn't want to experience a hurricane. The difference is, for us, this is the first earthquake we've felt in 5 years. Hurricanes, tornadoes and excessive cold, snow, floods, mudslides, they all happen every year.

Earthquakes and fires in California are unpredictable.

I hope that you are resting and sleeping well and therapy will help you this week.

So, for us ~ Jim has been up and down for more than a week. I'm sure it correlates to his fluid retention (ascites). Appetite semi-waxes and semi-wanes. I can feel his bones when I hug him. When I told him that, he chugged down an Orgain shake.

The depth of our grief for Jonathan is increasing as time goes by. Words can't describe how much we miss our beautiful son.

But the Sun sets, and the Sun rises. And we move forward with each day.

Just like every one of you.



Love & Light,



Rose

[Howie]

Well Virginia, I used to tease my sister when I was younger. But now she takes care of me like tomorrow. We are going to the electric company so I can get the notices like I used to get before my email address changed. I couldn't do it alone.