OT November Chit Chat

[Howie]

I have a cat loving heart, what else could they want?

[stillstANNding]

Beer, coffee, pasta, coleslaw ...

[Virginia]

Catnip!

Nuthatch, so glad to hear from you and to know that your family is safe. Thanks for checking in with us. We were concerned.

[Sunshine]

Terrific spasm 3 am.

[Virginia]

So sorry Sunshine, take a deep breath and let others take over on the moving!

[stillstANNding]

Sorry about the spasm, Sunshine. Did the tizanidine work? Is there thinking as to why this happen in the middle of the night?

ANN

[Sunshine]

It’s at the lowest blood,level as my last dose is double and at 9 pm. Doc said Can get up and double dose Baclofen and Tizanidine at midnight which brings other problems.
Was ready with rectal diazepam, tip all gelled up but the spasm subsided with Tizanidine which takes 30 minutes to work. Feels awful The Who,e day after. Laying low for sure for the rest of the week.

SPS stinks.

[SuzE-Q]

I'm so sorry, Sunshine!

I'm disappointed that MMJ is not helping with this, I was so hoping it might impact this kind of symptom if it helps with
spasticity.

I haven't mentioned this before, but I so admire you for the grace, yet strength, honesty and determination with which you've faced all these health challenges, new diagnosis and new limitations.

You haven't just stood passively by, but have worked the situation to the best of your ability in terms of treatment(s), consults, advocacy, accommodations.

You have been a beautiful example of resiliency and perseverance. I really admire your approach!

s

[Sunshine]

Wow, you bring tears to my eyes. I have plenty of low moments too.

[agate]

What a shame to have a week ruined, Sunshine! Maybe you can find some pleasant ways to while away that down-time you need to recover.

I agree with SuzE-Q about how amazing you are. You're doing what you want to do, and no disease is going to stand in your way.

[SuzE-Q]

Wow, you bring tears to my eyes. I have plenty of low moments too.

I'm sure you do!

But that's exactly the reason you have been a wonderful role model, because you're human, and it's affected you, and you're not Little Miss Sunshine, but a real person with real emotions that we can all relate to and understand.

I remember your post just a very short time ago, before the SPS diagnosis, when you wrote about how upsetting it was not to have the same free spirit as your friends when they went off on a surfing vacation.

Yet, here you've been demonstrating an amazing tenacity as you've navigated this new, uncertain path, and even found ways into the ocean you love so much closer to home when even that might have seemed insurmountable at times.

You've pulled yourself up by your bootstraps and shown such a strong spirit that is awe inspiring to see!

[nuthatch]

Hang in there, Sunshine. Hugs.

[Sunshine]

Thank yo so much. This means so much to me, coming from fellow warriors...

Last night I set a midnight alarm and took 10 mg Baclofen and 8 mg Tizanidine to get me through the night. No spasms. So far so good. Will avoid physical activity today, no swim, no packing.

Every night when I lighten up, I take my dose of Benefiber because the muscle relaxers stop my bowels from moving. I forgot that my hands sometimes involuntarily open while holding things. This was 3:30 a.m. so I dropped the can and there is fine Benefiber all over the wood floor. Can’t get onto the floor to clean it up due to it triggers shin spasms. Hoping there was no moisture there as it crystallizes the powder into sludge. It could mar the floor.

Waiting for DH to wake up and rescue it.....

[Cherie]

I have internet today for the first time since Thursday night. We are having significant problems at the Condo. We have basic Internet that supports email and surfing the web but not streaming and once a person gets a signal and begins to stream, it shuts off access for at least 90 minutes for anyone else trying to use that router. Place was full this weekend as it was annual meetings for all of the associations. We were going back next weekend for our regular time up there but there is just too much going on to do that gracefully , especially with Thanksgiving next week already. So...staying home to continue to clean the house from the repairs and prepare food for the clan for next Thursday.

Program tomorrow night in Rhode Island for the MS Foundation then Wednesday at the Norwood Marriott. ANN, if you are feeling up to it, I would love to see you and Peter. David will be doing part of the program sharing how he has learned to cue me when I don't realize I need to slow down. (Care Giver's month!). Went to daughter's family's concert last night in Arlington, MA on the way home from the Condo. All 4 of them were in it and both she and her husband as well as our 10 year old granddaughter had solos. Then out to dinner at a Sushi place across the street from the venue.

[Virginia]

Sunshine, I guess DH woke in time to get Benefiber off the floor. I know he does not mind doing for you - whatever he can. He can't suffer the pain for you, but many other things he can do and does.

Suze-Q, good to see you on line. Hope you are doing well.

Also, good to see Nuthatch. I have been so concerned about the fires in California. It really is bad there now.

Cherie, you are staying busy as usual. I hope David is doing well now, and you also.