OT November Chit Chat

[Virginia]

Howie, we always know you are around, at least we hope you are.

Ann, I tried so hard to give you some of your weight back. I went down 6 1/2 lbs. I was so proud, but then this morning I was back up 5lbs since yesterday morning. I was disappointed. I hope your GI gets back in touch with you soon and can figure something out. This is weird. But are you otherwise feeling good or is the hurting when you eat keeping you from feeling well?

Jeanie, so cute about Lacy. I can see it in my mind. My dog use to lay under the tree when she was alive and I thought it was just precious. I always said she was our Christmas gift. It is 28 degrees here right now, and I feel it. Makes me not want to go out or do anything. I would order groceries, but there are some things I want to pick out for myself. However, I plan to wait a couple of days until it gets at least a little warmer. Glad your exercises are working some for you. Sounds like your new friend is working out really well. I am so glad.

Everyone sleep well.

[agate]

Jeanie, Lacy has PJs? I see little dogs here in this building wearing very fashionable-looking coats and sweaters but for going outdoors. Didn't realize dogs wore PJs too.

Virginia, I have problems with my hands but never thought of Raynaud's. I figured it was osteoarthritis. My hands don't go all white but they look a bit white when the joints are red and inflamed.

I've decided to step up the program a doctor outlined for me years ago. I'm getting a container for soaking my hands in warm water 5 minutes daily while putting them through range of motion exercises--something I was told to do at the time but never did much. I'm also resuming exercises with a small ball. These are boring routines but necessary because I'm losing too much mobility in some joints.

I don't know if people with Raynaud's would find these exercises and hot soaks helpful but I found this:

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

[Catdancer]

So here I am in my new digs....or is one small room simply "dig"?? This is a new single story more or less accessible to people in wheelchairs, or with other impairments. There are wings that house those of us undergoing "rehab", and wings that are for everyone else. There is a gym and exercise room, nicely appointed all.sorts of equipment, accessible only when staff allows. There is a "coffee shop* -- not staffed, but thermoses of coffee set out, free for the drinking. And not much else. Im.getting 2 sessions a day, both physical and occupational therapy, so those 4 hours pretty much are the "highlights" of my day. Otherwise like any institutional setting, I eat whatever they plop down in front of me. Mostly overcooked bland fare...no choice.
As for me....shaky. This last blow was hard...I lost a lot of ability, agility, etc.I lost a lot of core strength...those muscles that keep you upright. Possibly it's the 'roids that have turned me into a mixer....all shaky and trembly. I'm hoping that will.settle down some as they work their way through the system.
Poor TC. He's not taking this well. He worked so hard to take care of me, he neglected himself. And he's a hoarder. And he clearly sees that none of that matters.when you have to be separated from your wife in this way. But there it is. This tired old cat survived quite a few over the years, but now she is holed up, looking out over catterville, wondering when or whether it's a good time to go.....

[stillstANNding]

Good morning, Cat. I hope the two sessions of PT/OT a day help you recover. I’m sorry that you had to leave the on-call kitchen behind.

I imagine that TC will bring you some outside food now and then. Peter brought me cheddar and we had cheese and crackers with a thermos of tea every night at 10:30 when the kitchen was closed. It was a small thing but I really looked forward to it.

Is your leg mobility or your facial sensation any better?

TC has had a fright and put so much effort into getting you to help. He needs a recovery, too.
ANN

[Howie]

Sunshine, how about some pictures when you feel up to it. Me like pictures!

[agate]

"Time to go"???? Catdancer, you have many good times ahead of you. This is just a bad patch. Soon you'll be back home where the cats and TC are missing you. You might be able to talk him into being less of a hoarder, and that's probably something that needs to happen.


Sunshine, I agree with Howie that pictures would be great. Then many of us would be parked on your doorstep, waiting to move in, but if you're willing to take that chance, by all means post photos.

[Virginia]

Ahh Cat, now is not the time to think about going anywhere, only think about working with the therapists who have been delegated to take care of you. Also, you may think about TC and as you said how hard he has tried and is still trying to keep you at home. So glad you are closer to him. You both have been through so much, but he still needs you wherever you are.

I am so glad to see you reading and posting again.

[Sunshine]

I have read most of the thread but still have some catching up to do. Kat, you are a model of being a good patient. You advocating for yourself in such an effective manner and got the care you need it. It is so common for the elderly to simply allow doctors to look through them and discount there problems. This kills people. But not our cat . Our cat has nine lives because she does not take bulls#$t from anybody

[Virginia]

Agate, thanks for reminding me that I need new gloves. I ordered some and hope they fit. My old ones have been worn through a number of winters. I like to try them on before buying, but just cannot take going to a store right now.

I do put my hands in hot water. When they are so cold and hurting I can't think to put them in just warm water. I feel that I have to warm them up and get the blood flowing again quickly.

[Sunshine]

IV I G was a big problem yesterday. Things are going fine until six hours of the eight hour infusion. I stood up and walked to the restroom, about 12 steps. Both legs spasmed. I hung onto the door frame while the nurses could run and get a chair for me. It was very very painful and frightening. They started off the Ativan in the IV and waited 45 minutes toRestart the IV I G.

That night, I woke up At 11:30with terrific leg spasms in both legs again walking eight steps to the toilet. My feet twisted to the side at the ankles and felt like they could snap a bone.Since I was only an hour away from my megadose of baclofen and to Zana Dean, I took it early and the spasm eased up with in 30 minutes. I was pleased I did not have to wake up husband.

Unfortunately, at 2 AM, terrific spasms begin again and I woke him up to help. We did the rectal valium which works in 10 minutes. I then woke up at 5:30 with legs that we’re trying to spasm. I lay still and took my 6 AM does at 5:30 and it resolved in a half hour. My legs are now very weak and the muscles keep reporting in.

I called my neurologist. He is increasing me from 100 mg per day to 120. If this does not do the job, he is thinking of Adding Valium to the mix. Valium is often used as first-line treatment for stiff person syndrome. He was trying to avoid it because of the problems with tolerance.

If that does not work, there’s always the option of a baclofen pump.

Today I am unable to drive. So I am staying home and doing just a little bit of what I can and nothing physical.

This is a relentless disease.

[Virginia]

Bad night for you Sunshine. I will be glad when your at home pool is ready for you. Maybe that will help a little.

[stillstANNding]

So frightening, Sunshine. What do you think caused it? I realize it could be “nothing” but note they stopped the IVIG for 45”. Was that thought to be a cause?

I hope you have an uneventful day. Music helps me. Classical is calming to me, some jazz. I realize that sound is an iffy thing for you.

Best to you,
ANN

[SuzE-Q]

Sunshine, I'm so sorry you have had such a rough time of it. I wonder if you've overdone it due to the move, and your SPS is protesting now. Glad your doctor is very available to you to work through any issues. Scary, I'm sure.

Jeanie, glad to hear you've set up for the holidays, and you're enjoying time with your new friend! Glad you're exercising too, I've been impressed myself that I've improved my strength some after a short time!

Cat, sounds like an intensive program that will really help you to improve your core strength and help recover what you might have lost with this attack. You were also treated quickly, and that should help. Maybe have TC bring you in some treats - he'll feel like he's helping, and you'll feel like you can have a reward for your hard work. I'm no expert, but I've heard chocolate is good for that. :-)

ANN, hope you are doing okay and your doctor has some other ideas.

Virginia, they have cotton gloves without fingertips that jewelers wear, that might keep your hands warm, but you'll still have movement and touch sensitivity of open fingertips. Inexpensive too.

[agate]

Sunshine, there's nothing like moving to make me go downhill. I've noticed it several times now because I moved several times since MS came along. Each time I tried very hard to pace myself and not get too tired but in the last day or so I ran into big trouble.

One problem seems to be that a person has to meet a deadline if movers are showing up at a certain time. They want to start right in, and it wasn't in my interest to keep them waiting (at their hourly rate!). Having to meet any deadline is bad news for me, even if it's just having to be ready for a van ride by a certain time--any situation where people can't wait around.

[Sunshine]

Maybe, but the attack was after many good days.
Thinking it’s the relentless disease