Hi!: How are YOU? And seriously, what are... - My MSAA Community

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Hi!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
β€’53 Replies

How are YOU? And seriously, what are you doing? How are you feeling? All good? All not so good? Spill it! Curious minds want to know! Ok not really, I just want to know!😁🀣

Much Love!πŸ€—πŸ’•πŸ¦ˆ

PS I miss shark week πŸ˜”

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Jesmcd2 profile image
Jesmcd2
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53 Replies
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rjoneslaw profile image
rjoneslaw

I'm doing well.

This morning I woke up thinking I had slept the day away. When I woke up I thought it was 8pm when it was 8am because of this I took my evening meds and the ones I thought I missed at 5pm.

My sister tried to tell me it was still morning but I didn't believe her til I looked outside an the sun was shining bright

As a result of taking my evening meds and the ones I thought I missed, I slept for 4hrs

I had big plans I had moved to the next level of my workout program, so now I have to wait til 2morrow.

2nite I will be doing a webinar with O. yes I'm currently on it but I just wanted to hear what they have to say since I didn't hear their info session b4 starting. I did my own research and the dr from the hospital when I was there last year stated in my medical records I should be on it as he had white washed me off tecfidersa without telling me what he was doing and why. I just knew I hadn't taken it for 14 days. Once I was released my neuro told me what was going on.

bxrmom profile image
bxrmom in reply to rjoneslaw

That is irresponsible of your doctor not to tell you what he was doing and why. You should have had some input in that or at least known why you were taken of Tecfidera.

rjoneslaw profile image
rjoneslaw in reply to bxrmom

true but at the point I didn't care because I was more concerned about not being able to walk and not being able to get out the bed when I wanted too . There were times when I needed to go to the bathroom and it would take them forever to come. So since the bed alarm was on I would just set it off so they would come faster.

Being take off was a good thing in the end because now I'm on O with improvements

JSSimp profile image
JSSimp in reply to rjoneslaw

Are you saying Tecfidera gave you a lot of side effects with being unable to walk? I am scheduled to start med possible this wk.

rjoneslaw profile image
rjoneslaw in reply to JSSimp

Yes I was on it for 4yr I had lost some abilities like lifting my leg to go and down the upstairs.

prior to switching I wasn’t able to bend my leg for a couple of days so I had to take steroids for 3days. Then less than a week later I just dropped down to the floor and couldn’t walk. This is why I’m on O which has been great for me. The spasms I had relaxed and my gait sped up

in reply to rjoneslaw

Did it help? Getting up and down stairs?

rjoneslaw profile image
rjoneslaw in reply to

O is helping. the spasms have relaxed now I just have to strengthen the hamstring but I have gained some strength where I can lift my leg half way. Don’t get me wrong exercise is apart of it too.

JSSimp profile image
JSSimp in reply to rjoneslaw

Ok. Thanks for the info. I am 48yrs of age and just doing my research to see will this be a good starter med. just don’t want to lose my ability to walk and I am sure there will be some signs before going to the stage to alert my Dr if it’s the right med for me. Thanks for the info.

rjoneslaw profile image
rjoneslaw in reply to JSSimp

My dr told me if Ocrevus was out when I started taking meds she would have had me on it and not Tecfidera because I was losing a lot

JSSimp profile image
JSSimp in reply to rjoneslaw

? Losing a lot

rjoneslaw profile image
rjoneslaw in reply to JSSimp

slowly over time

JSSimp profile image
JSSimp in reply to rjoneslaw

Your walking ability decreased slowly over time with Tecfidera and now you are walking again if I am understanding clearly with Ocrevus

rjoneslaw profile image
rjoneslaw in reply to JSSimp

Yes with exercise as well. Don’t get me wrong I’m still slow but faster than I was.

I just know for me I’m slowly improving because of my daily routine.

Before the lockdown I has actually gotten off the walker to the cane but then I wasn’t able to keep it up because of the weather. Now I’m working to get off everything.

My care coordinator from my insurance tells me my determination has a lot to do with me doing so well because she has other clients with MS and they have given up

Redhead4377 I forgot to include u in my reply as well

JSSimp profile image
JSSimp in reply to rjoneslaw

Ok. Sounds great. I will be starting Tecfidera on Monday was given the instructions on today. I usually try to be active with walking and doing PT right now. I am expecting great results with meds and for my future. Thanks for all the helpful information and may your health improve daily. God bless!

rjoneslaw profile image
rjoneslaw in reply to JSSimp

You as well stay on top of everything and when you notice a change don’t ignore it.

Keep me updated

JSSimp profile image
JSSimp in reply to rjoneslaw

I will keep you posted and let me know your journey as well. Many blessing!

rjoneslaw profile image
rjoneslaw in reply to JSSimp

I just started phase 2 of my online workout program now he has added some exercises and repeating some.

The 1st day drove me crazy because I was up and down on the floor in my case the bed . I had to go and read what I was supposed to do again. I had taken everything out of order .

JSSimp profile image
JSSimp in reply to rjoneslaw

That’s great just keep at it and it will all fall in order in the day to come. You are on your way to great things.

in reply to rjoneslaw

Thanks

Kenu profile image
Kenu

My back and left butt cheek is still killing me from fall couple weeks ago. Ribs are doing better πŸ‘ Have been using my cane to be on the safe side. My buddy Hugh came over and finished hanging pictures and put the last boxes πŸ“¦ awayβœ…. Made two trips to thrift store with donations and now have both vehicles πŸš— in garage 😁. Almost there on new house 🏠 πŸ™πŸ˜‰ Ken πŸΎπŸΎπŸ‡ΊπŸ‡Έ

jimeka profile image
jimeka in reply to Kenu

Sounds like you have a real good buddy there. Sorry you are still hurting, but glad the ribs are better. Your new place will feel more like home with the pictures hung. Enjoy πŸ˜‰

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Kenu

Hope you feel better soon and get moved in all the way very soon!! πŸ€—πŸ’•πŸ¦ˆ

hairbrain4 profile image
hairbrain4

Not much. Working on a quilt till my eyes get tired. Then I have to rest them awhaile by doing something else besides staring quilting. That's usually "Suzie Homemaker" stuff like laundry, vacuuming etc.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to hairbrain4

I can't wait to see it!! An I hate the Suzie Homemaker stuff. Wanna do mine? πŸ˜πŸ€—πŸ’•πŸ¦ˆ

hairbrain4 profile image
hairbrain4 in reply to Jesmcd2

Nothing personal, but nope. I don't want to do mine, but Jack (the dog) won't do anything except make messes, so tag I'm it. :-)

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to hairbrain4

πŸ€£πŸ˜‚ I hear ya! πŸ€—πŸ’•πŸ¦ˆ

bxrmom profile image
bxrmom

I'm doing good, though my neck has been hurting this week and I just had my adjustment last week. I think I may need to get my hair trimmed and thinned out again as my hair is really thick. I am currently using a rapid relief balm that has cbd in it and really seems to work on my back when I use it there. My neck is a hit and miss with it.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to bxrmom

I'm sorry πŸ™ does a heating pad help? Or sitting in a different seat? Sometimes it works for me πŸ˜ŠπŸ€—πŸ’•πŸ¦ˆ

bxrmom profile image
bxrmom in reply to Jesmcd2

Thanks. I wish those things helped. The only other things that I have found that help are to either lay down. Sometimes sitting in a different spot and use some ice helps.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to bxrmom

πŸ™ you should get that checked out! πŸ€—πŸ’•πŸ¦ˆ You can borrow my neck brace!😁

bxrmom profile image
bxrmom in reply to Jesmcd2

I see a chiropractor every 2 weeks for it. I think I'm good on the neck brace, but thank you lol

greaterexp profile image
greaterexp

Rough couple of weeks, but still getting a few things done. It will get better soon.

jimeka profile image
jimeka

Finally had Harry and Charlie come and stay over which was very tiring but great morale booster. I sure have missed them. Anyone heard from BigMar7 or Texandyroe or Violonchelo also Sukie427 and mrsmike , just wondering how they are? Hugs Jimeka πŸ€—

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to jimeka

I haven't heard from any of them πŸ™ I'm so glad you got to spend time with the boys!! πŸ€—πŸ’•πŸ¦ˆ

MarkUpnorth profile image
MarkUpnorth

Same old, same old, BUT, staying safe, social distancing, wearing my mask when out in public, using hand sanitizer..... Getting old? Yes, Maybe, but can't let up at all during a pandemic. Have to stay vigilant. But, I'm really going to miss my once a month at best trip to one of the buffets! Really my only downfall regarding healthy eating. But, those are most likely gone forever. The all you can eat salad bars were all I needed.

in reply to MarkUpnorth

Is Golden Corral done?

Love/Hate that place...

Every time, I would over eat and then wanna nap 😴 in the parking lot

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to MarkUpnorth

Keep up the great work! Sorry about your fav. Food tho! πŸ€—πŸ’•πŸ¦ˆ

MarkUpnorth profile image
MarkUpnorth in reply to Jesmcd2

I'll live, but I'll just have to repeat at home when I get really ambitious?

DM0329 profile image
DM0329

I'm coping much better now, thanks. Fortunately, the extreme heat wave finally ended here in Pittsburgh. Now, we have blue sunny skies with breezes! :)

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to DM0329

I woke up and it was 45! What's up with that?πŸ˜’ I'm glad you're feeling better!!!!πŸ€—πŸ€—πŸ’•πŸ¦ˆ

79 here in big city Chester, Montana

Yea!

CV97 profile image
CV97

Day 2 back to work here, first day with students. Dog got up at 3:40am. Didn't get my 2nd cup of coffee in until 1:30pm.

Frozen pizzas for supper because that's how we roll the first couple weeks of school. Son started his senior year. Students were super compliant on the masks and social distancing, which definitely made the day better. And the pup made it through 6 hours in crate for the first time - and without an accident (which I was a little worried about because he's been able to go out whenever he wants for 5 months. )

Overall, a pretty good day. Only 174 school days left!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to CV97

Great news on the schools and the pup!! And I don't blame you on the pizza!! πŸ€£πŸ€—πŸ’•πŸ¦ˆ

Doing good! M-F I wake up at 6, get kids up(13&17 yr old) take off for a2+mile walk(they run πŸƒβ€β™€οΈ πŸƒ) come home clean up /Eat and they start distant learning for school.(online schooling)

got blood work back, my B cells are showing activity.

I’ll be making an appt to get my next infusion of ocrevus soon.

Not to worried, 🧑

I’ve only officially had 1 infusion so it was expected I guess.

Hope everyone stays safe!

If no one has told you today or recently, nothing but love 🧑 for you and I wish you all the best!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to sMilEs_N_bLuE_sKiEs

I was lucky to get my girls outta bed at 6, let alone run!🀣 Have they always done home schooling? Good luck with your next infusion! And thank you! To you also! πŸ€—πŸ’•πŸ¦ˆ

sMilEs_N_bLuE_sKiEs profile image
sMilEs_N_bLuE_sKiEs in reply to Jesmcd2

πŸ˜‚ my daughter is the difficult one for me, but it has gotten a lot easier to wake her.

Nope, home schooling has only been because of Covid and my county hasn’t met the governors orders. Not enough people here have taken it seriously. Whether they believe it is real or not, they don’t like to be told what to do; as in where a mask and keep their distance... πŸ€¦β€β™‚οΈ

And thank you!! 😊

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to sMilEs_N_bLuE_sKiEs

Yeah, you get Alot of that with the covid. Believe or not believe. Or just invincible. πŸ™ƒπŸ€—πŸ’•πŸ¦ˆ

falalalala profile image
falalalala

I've been well and have been busy working. The hot weather calmed down and that was a Godsend.

How are you?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to falalalala

I'm glad you are well! I have been trying to get things done outside since it's cooled down abit. What have you been working on? πŸ€—πŸ’•πŸ¦ˆ

falalalala profile image
falalalala in reply to Jesmcd2

I've been getting some artwork done.

Gardening can wait as it's a nightmare.I need to come up with a solution for weeds.Ugh.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to falalalala

Round up! 🀣 Or vinegar is supposed to work. I also love my weed eater!🀣 I can't grow anything but weeds.πŸ˜’πŸ€—πŸ’•πŸ¦ˆ

falalalala profile image
falalalala in reply to Jesmcd2

They are in the flower beds so anything will kill the good stuff unfortunately.

Maybe mulch will help?

Don't go the Round Up route if you can help it.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to falalalala

I know round up is very bad! 😐 No clue about the mulch? πŸ€—πŸ’•πŸ¦ˆ

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