Keep on Moving: December 2019

[Sunshine]

MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps you did housework? Or exercised in a pool? Tracked your count of steps? Chased your cat around the home? Pushed the wheelchair wheels with your arms at the store? Post them here and we can support and egg each other on.

REMEMBER: this is a keep on moving thread, not keep on exercising! Any moving is important— it doesnt have to be “exercise”! Even Science proves that...

RABBIT RABBIT!

BTW: We are only one month away from 2020– (shudder)

[Lazarus]

Glad to see this post. I have not been stretching enough and my body is yelling at me to get up and move. There is a major snowstorm set to hit tomorrow and that got me out putting tarps over 4 vehicles. That works great to remove snow with minimal effort...the word minimal is relative.

The storm is supposed to last all day Monday into Tuesday morning. I am supposed to get rituxan on Monday and doubt I will make it. 19 years of infusions and this may be the first one I miss! We live on a small isolated farm with a narrow road that the town does plow but late.

Maybe I will just wait for spring...let it all melt. My father in law always said “ let the guy who put it there take i t away!”

[Sunshine]

Good Luck Laz! You are amazing in your Keep on Moving!
Do they reschedule your Rituxan for next week, or how does that work?
Waiting for DH to awaken so I can do my morning swim.

It will dip into the 40’s Monday and Tuesday night, so no swimming Tuesday or Wednesday. Wed is IVIG anyway, so that was a no go...

[Lazarus]

Good Luck Laz! You are amazing in your Keep on Moving!
Do they reschedule your Rituxan for next week, or how does that work?
Waiting for DH to awaken so I can do my morning swim.

It will dip into the 40’s Monday and Tuesday night, so no swimming Tuesday or Wednesday. Wed is IVIG anyway, so that was a no go...

Not sure about the reschedule and the second infusion is already scheduled so , since they are given 2 weeks apart, I am not sure what will happen. The storm seems to still have some ifs in terms of timing and amounts so I will be in a quandry. I am trying to just throw up my hands and stop fretting.

[agate]

Any chance that the infusion could be done in your home in a case like that?

[Virginia]

Linda, I did not realize you had been doing Rituxan for 19 years. That is one reason you are able to do as much work as you do. Look what it did for Cherie. Would love to be able to take that drug.

[Lazarus]

Any chance that the infusion could be done in your home in a case like that?

Nope. I need the emergency personnel around.

[agate]

It was a long shot. Since there's been talk of making Tysabri infusions doable at home, I thought maybe they'd be willing to set this up for Rituxan, but the Tysabri deal is in an experimental stage only, I think.

[Lazarus]

It was a long shot. Since there's been talk of making Tysabri infusions doable at home, I thought maybe they'd be willing to set this up for Rituxan, but the Tysabri deal is in an experimental stage only, I think.

Thanks for the thought..in the 20 years I have been doing infusions I have only had 2 serious problems during infusion but I would not want to be anywhere else but at the center.

Actually the storm did not bring a s much snow as expected but here, on the isolated farm, it is very difficult. I almost would have ventured out if I did not have a couple of hours work to get the snow off two cars and the plow and I would be very uncomfortable leaving John alone. I tried calling a neighbor who used to plow for us but he is not around so If I clear a path to the plow and warm it up John will probably plow us out.

But, you can see it will take many hours to do all that. Too long to get in a 6 hour infusion. So I called the main number and asked them to get a message to the infusion center that I will not make it. There are 2 infusions, 2 weeks apart so we should be able to flip the schedule and make the 16th my first one and reschedule today’s for 2 weeks after that.

I hate it when I can not make a decision...which shows how much I need an infusion. Glad I cancelled. Now I can stop fretting.

[Sunshine]

Today I swam 1/2 mile plus 80 yards in a 86F pool and 68F air. The air is plummeting quickly and will be in the 40s tonight, so I likely will not swim tomorrow....

[agate]

Linda, it's too bad you're having to postpone the infusion. Community resources probably aren't available in your location? There just might be some service available that would clear the snow for people in remote situations who are unable to get out due to snow and ice. I don't suppose the local MS Society chapter would have any answers?

It sounds as if it's all settled for now, but in the future maybe there's some option out there that would work. Might be worth a try if you haven't already looked into the possibilities....

[Virginia]

Agate, around here it would cost a fortune to get a plow in here. I don't know about Linda's rural area. Glad she cancelled. It is too dangerous.

Sunshine, you are still doing really well on your swimming. I don't know what our temperatures are going to be tonight, but it was really cold out yesterday.

Yesterday I went to the bank drive thru, then to pick up some vacuum cleaner bags, then to get some slacks and a pair of jeans fitted and hemmed. Will try to pick them up next week, then to K-Mart to pick up medicine, then to Lowe's groceries to get just a few things (I forgot to get chicken), then went to Panera and came home. I left about 3:15 and did not get home until after 7:00PM. Traffic was so heavy I could hardly get around.

I wanted so much to stop at Whole Foods and go through their hot bar and get food for last night and their salad bar and get food for tonight, the salad bar food would keep in the refrigerator, but I had a couple of frozen items in the trunk so I once again went to Panera because it was quicker.

Yesterday was bitter here. The wind was howling all day and I hated being out in it so much, but was glad to get a few things done. While in Lowe's Foods I couldn't reach but two of the individual containers of yogurt. I kept looking around and finally saw a very young man (either late teens or early 20s). I told him he looked liked someone who had the height that I needed and would he mind reaching an item for me. He got me 4 more containers and when I thanked him he told me to have a good day. I was behind him at the check out counter and he only had one item. I told the checkout person to put it on my bill. He readily accepted it and put his arm around my shoulder and wished me a happy Christmas. He was a nice young man who did not make me feel that I was intruding on him.

[agate]

What a nice encounter that must have been, Virginia. Items in stores are often hard to reach, and store employees don't seem to exist any more in the large stores. Asking someone tall was smart! I tend to assume that nobody wants to help and so don't ask. But if you don't ask, you might never get any help. Duh! Sometimes someone has come along and offered to help but you can't count on that happening.

And it was so nice that you were able to do something for him too.


I always took my reacher with me but even then there were things I couldn't get at.

[agate]

Average steps per day for November, based on 28 days: 1,298

For the first part of the month I used only the old pedometer, and for the rest of the month I used an average of the readings at the end of the day on each of the two pedometers--so that figure is higher than it might have been with just the old pedometer.

[Lazarus]

Linda, I did not realize you had been doing Rituxan for 19 years. That is one reason you are able to do as much work as you do. Look what it did for Cherie. Would love to be able to take that drug.

Sorry to be confusing. I have been doing infusions for my MS for 19 years. Before that I did betaseron, avonex and copaxone. I did novantrone for 2 years and IVIg for 8 years and some other chemo...I forget what they were. I have been doing rituxan for about 5 years.