Keep on Moving Thread: April 2019

[Virginia]

You definitely were a whirlwind Ann. You are cleaning for the plumbers??? That's as bad as cleaning for the maid. Lot of steps for you. Glad you felt like before MS. That is a good thing. Do get some rest today and keep the cats with you for love and comfort.


Howie, Ann had one cat and adopted two more. She now has three. Just saying.

[Howie]

I had 3 at one time, but it's just Sam now. I forgot to get dry food today, so that's on the schedule for tomorrow, but she has plenty of sliced turkey. I did make my coleslaw a while ago. She even eats that when I let her clean my plate after a meal.

[stillstANNding]

You have a good memory, Virginia. Sorry a Laura was a no- show.

ANN

[Sunshine]

Today I swam 20.5 minutes for 666 yards. Its getting warmer outside in Florida now, which no more shivering getting from the pool to the hot shower. nice :)

It was brave because this morning at 1 a.m. I had a really nice foot spasm: the Rt foot rotated counterclockwise about 45 degrees. I was able to stretch it out, and took the muscle relaxant that eased up the whole problem in about 30 minutes.

[agate]

Pedometer readings:

4/4/19 - 1442 steps
4/5/19 - 1155 "
4/6/19 - 1067 "
4/7/19 - 1161 "
4/8/19 - 1078 "
4/9/19 - 1212 "
4/10/19 -1270 "

[Howie]

There you go, making me look bad again!

[agate]

The world hasn't seen your step counts and so comparisons can't be made. But resting is good too.

Go with the flow.

Roll with the punches.

Live in the moment.

It's all good.

At least nobody is being sucked into one of those black holes.

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[Howie]

Thanks Agate. Black holes are the most interesting subject in modern physics.

[Virginia]

Agate, you are a wonder. Your step count just goes on and on, getting more and more regular in the higher range.

[Sunshine]

All of you inspire me re keeping on keeping on.

Day before Yesterday I swam 20.5 minutes, 603 yards. Yesterday was a day off swimming as I had my pre op all morning for the anesthesia Cystoscopy and Hydroextension (SP?)

This inspired me:
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I emailed her today as we are fellow SPS warriors....

[Virginia]

Sunshine, what an amazing lady and you are too. I hope you get to know her.

When is your next procedure to be done? Do you know?

[Sunshine]

My procedure is in 3 weeks. He only does it on the day of the week I have infusions alternate weeks. And I didnt’ want an early afternoon time as my body starts to break down by around 2 PM. So, I waiting for the 7 am slot (5 am check in time—geesh). Hoped for an 8 or 9, but the bean counters insist on them stacking up the times, to favor income over patient needs. That is the state of medicine nowadays.

[Sunshine]

Yesterday I swam 666yards in 20.5 minutes. It was my assigned day to take an Ativan to get a break from pain and spasticity.

I took it 2 hours after the swim and it lasted all day until nearly bedtime. It was terrific. I went to Home Depot with DH and started a new windowsill hobby of succulents.

And tackled other things I had wanted to do. ALl the while, no spasticity, no pain. ALmost normal. ALmost...could def surf small waves on this. Will try that sooooooon

[SuzE-Q]

Sometimes first appointment slot of the day is good so you don't have to worry about the doctor running late for it.

Sunshine, I know Howie has mused about this question in the past relating to pain pills, but it just seems to me you and your doctor might benefit from a conversation about the benefits versus the risks of daily ativan use for you.

Yes, you might develop a tolerance and physical dependence on it. But isn't that an acceptable consequence given the physiological improvements it gives you and the dramatic improvement in your functioning and quality of life?

Cherie, I believe, was taking up to 4 mg/day. I don't know what the upper limits are for it, but that would mean there's a lot of room in dosage for you to be able to work up to over the years if you began taking it regularly and anticipating a tolerance developing. Of course, I've taken it for many, many years and have not upped it beyond just slightly over 1 mg/day years ago. So, it doesn't always happen a need to continuously increase your dosage.

It just seems to me that the level of functional improvement it gives you might be worth it to take daily if it can give you such a significant daily boost in your capacity to live and enjoy your best life.

[Sunshine]

Thanks Suze. The concern is that it will stop working. At all. No matter what the dose.

There are two I take infusion weeks, every 2 weeks. Then there is the need to take it periodically to stop a severe spasm. So, he doesn’t want me to suffer (in his words), but he also wants to be wise about the frequency. If it became too awful, I will just have to see him on an urgent fit in appointment and update the deterioration, I figure.

I could likely get by with 1 per day, maybe 4 days a week, plus the need for spasm control, and IVIG (2).

I have cut down Baclofen to 90mg daily from 120 and now the se’s arent unliveable, just uncomfortable (no STM, problems concentrating, feeling like I am going up ;and down on a carousel and around and round....

THe cognitive stuff of getting pictures in my mind into articulated words in a timely fashion, is new with no med change. My Brain MRI is in June...