Dr update.: Hello all my lovelies! Gents... - My MSAA Community

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Dr update.

rlh1974 profile image
39 Replies

Hello all my lovelies! Gents included! I went to my Neurologist yesterday. I hate going there! She put me on a 3 day round of steroid infusions. This month and next. Just to try and get me on less of a rollercoaster. Gah! I hate steroids with my diabetes. Makes me feel like sh........ for days. However she said since my insurance will be running out and that new O drug is out of the question and it's older version. She wants to see if I can get stabilized for as long as possible before the insurance runs out next month. So there is my Dr update.

I also went out three times in the 90 degree temps yesterday. I was feeling good. Put on my cooling towel and watered the plants in the yard. Rested then put my cooling towel on and went for a walk (mind you the guys paving my street were laughing at me.) And I went to the Dr. Needless to say. I went to bed at 8pm last night. and slept awful and feel absolutely drained today. So lesson learned. Way to ruin feeling good, and ruin the next day. Go out when it's in the 90's and super humid because you feel good. Because then you won't!

Have a great day guys!

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rlh1974
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39 Replies
Allen5280 profile image
Allen5280

Rob, I can't even begin to count the number of times I have had to "pay the piper" for having to good of a day! I don't think I will ever learn completely! Somet8mes they are few and far between and I end doing it all over again. Always wondering the next day why have I done this to myself... AGAIN! As far as the guys laughing at you, I hate that. However, I am actually to the point where most days I just don't care. I see it regularly it seems. When I am having a rough and wobbly day, I see their diapers and snickering and laughing. I can only imagine what they are saying... those days I want that shirt that says... no, I'm not drunk I have ms. Would it really matter though? They would probably find something else to poke fun at. Just the way some people are. People's favorite pasttime is judging this or that. What this person does or doesn't do. Why did he/she do this or that? Why don't they just do this or that. It's a constant in this world of ours. There are reasons our Lord tells us judge not least he be judged. We never know what the person next to us may be going through, or have been through in their lifetime. One thing MS has taught me is you really don't know what a person has to go through until you really are in their shoes. Hope you get feeling better soon and your doc helps you find some relief. Thoughts and prayers

Allen

rlh1974 profile image
rlh1974 in reply to Allen5280

Allen5280 I did not take offense to them laughing at me. It was over 90 degrees and they were laying hot pavement wearing pants and t-shirts and hats and vests. I would laugh to! Although you do have some valid points that get under my skin as well. People constantly look at me in a handicapped spot and shake their heads and judge. But, I stopped letting it bother me. I have way too much on my plate to let stupid people dictate how I am going to live my life. I so want that shirt that says I'm not drunk, I have MS. I also need one for parties and church that says please don't F'n touch me! On the front and back! All the guys I know are the hug and back slap type of guys! Last time someone did that to me. I think I cried for a week. My pain is Thoracic. You touch me with a feather and I jump!

Thanks for the invite Allen! Always appreciated my friend! Always good for a good laugh!

Take care,

Rob

Doubled51 profile image
Doubled51 in reply to rlh1974

Although I'm still a relatively new kid on the block I've already developed an attitude of I really do care what people say about my staggering or stumbling. I ignore them like they don't exist. If I'm the best entertainment they have at the moment they are easily entertained. I've got better things to do than care what they think about me. Far as I'm concerned they have a worse problem than me.

kdali profile image
kdali in reply to Doubled51

They do and it's pathetic but I don't have the spare energy to pity them.

Doubled51 profile image
Doubled51 in reply to kdali

Same here. And I'm sure not gonna waste my valuable precious energy on them

rlh1974 profile image
rlh1974 in reply to kdali

I can't imagine you not turning around and killing them with kindness! Doesn't seem like you not to!!!!

jimeka profile image
jimeka in reply to Allen5280

Allen5280 you know Allen, while people are talking about you, they are leaving others alone, blessings Jimeka 🦋 🌈 🤗 🙏

Allen5280 profile image
Allen5280 in reply to jimeka

jimeka thank you for reminding me of that blessing!!!! Yeah 😁

jimeka profile image
jimeka in reply to Allen5280

Allen5280 its nice to see your smiling face again. Have you seen any improvement yet with the new drug? Blessings Jimeka 🦋 🌈 🍫

Allen5280 profile image
Allen5280 in reply to jimeka

jimeka I am doing well with the Ocrevus. I am not necessarily doing better or worse. For me i am always scared of a new dmt and the side effects I am going to have to deal with due to hypersensitivity, so far it jasnt been to bad. I felt really good after my infusion but I think it was more the steroid effect. However that has come with its price of its own. I am littered with body acne. I had to deal with it after every steroid I have treatment from... so o scrub a little harder and a little longer and a bit more often hoping it will clear up soon. It has been getting better than it was. So far so good and I am a bit relieved coming up on my two month Mark of my second infusion of the 1st dose. Yeah, so other than the summer heat I am a happy camper. Literally I live in a 5th wheel travel trailer. For the time being anyhow. 😁

kdali profile image
kdali in reply to Allen5280

Scrubbing might make you feel better about the skin hatred you probably have right now, but that tends to spread acne. There's a sulfa lotion you can ask for and there's no side effects.

Allen5280 profile image
Allen5280 in reply to kdali

kdali Thank you I will be sure and ask about it. If it's like last time was a rash from tifectdera and I was referred to a skin specialist. Is there anything over the counter that helps cause a whole bottle of nutragina body wash didn't help a bit. Also have one of those body scrubbrushes on a stick. Not a loofah an actual brush. Should I not be using that?

kdali profile image
kdali in reply to Allen5280

Oh my! 😂 You really set out to murder it! I would put down the loofa and make peace ✌️ In my experience, the washes did nothing.

Yes, over the counter you can try something with salicylic acid and they have everything from pricy gels to cheap astringents you apply with a cotton ball (or your hand like aftershave). It will sting a bit on broken skin.

For spot treatment there are benzoyl peroxide creams, you just dab a layer on each bump or thin layer on an angry section of bumpy skin. Peroxide bleaches clothes and towels, so be careful if you try that one.

Generics are the same quality as brand.

Allen5280 profile image
Allen5280 in reply to kdali

P.S. I considered a wire grill brush so that may be on the line of the skin hatred you mentioned! 😂

rlh1974 profile image
rlh1974 in reply to Allen5280

Well, that may stop the skin problem, my removing your skin all together!😂

KrittyKat60 profile image
KrittyKat60

@rlh1974

Rob, you are so right about over doing when you are having a good day and the feel like crap again for 3-4 days after. That's why I try to stay home unless it's really important that I attend or do anything especially when it's hot or humid or both. Hope you feel better soon. 👍

rlh1974 profile image
rlh1974 in reply to KrittyKat60

KrittyKat60 I try as well. It is just one of those things, I am a guy that used to be able to do anything, fix anything, build anything. So I just go ahead and do it when I feel good. Then pay the price. My wife gets so pissed off! But hey, maybe I will learn one day. Maybe!? Maybe............. However, She spoiled me yesterday. She purchased me a new recliner. I should piss her off more! HAHAHAHAHAHAHA!

Thanks,

Rob

ssdw1958 profile image
ssdw1958 in reply to rlh1974

Did you get the electric one , I have one of those and do you have the one with batteries. If you do have spare batteries on hand. I had a power outage during the winter. Thank goodness my son found batteries in the house. One more thing the end where your heels rest on I put a soft there and it makes my heels feel so much better. Have a relaxing 😎 nights.

Eleyne92 profile image
Eleyne92 in reply to ssdw1958

Omg! I LUV my electric recliner. Most comfortable sleep ever! I have enough paralysis that I can't lay in bed comfortably for any length of time. I might fall asleep, but wake an hour later to manually move my body and relieve the pressure. Then I'm wide awake. My recliner allows me to sleep for three or four hours at a stretch. (Just wish my bladder was as cooperative. 😕😠😛)

ssdw1958 profile image
ssdw1958 in reply to Eleyne92

I take Myrbetri25 mg but after seeing my neurologist he put it up too 50 mg I also take Vesicare 10 mg

My urologist put me on both med first oh by the way I also have kidney stones why leave anything out right now I have about eleven btwn each kidney

But I just made the change with the meds made will see how that goes maybe I'll sleep 😴 at night.

KrittyKat60 profile image
KrittyKat60 in reply to rlh1974

@rlh1974

LOL. Yeah especially if you are rewarded for it. She must love you lots if she rewards you after you piss her off. Haaaaaa. Enjoy that recliner for after your long walks and anything else you do that requires a good nap.

Doubled51 profile image
Doubled51 in reply to KrittyKat60

I absolutely love my electric recliner. Makes a lazy person lazier and I do lazy Well. Lol.

rlh1974 profile image
rlh1974 in reply to KrittyKat60

KrittyKat60 One prob. We just put the recliner in place, plugged it in. and the mechanism is all wonky! If I can't direct my son how to fix it. It came from the clearance warehouse. Non returnable. I am swearing like Yosemite Sam right now!!!!!!

AHHHHHHHHHHHH

KrittyKat60 profile image
KrittyKat60 in reply to rlh1974

@rlh1974

Good morning Rob. That really bites your chair won't work and you got Zonked!! Maybe you can find someone you know than fix it. Keep the humor it always helps to laugh even when it doesn't seem funny at the time. I'm sending one to you to get started. HAAAAAA Hope that helped.

When I get a new living room set I'm definitely making sure there is a rocker recliner included in the set. I used to have one when raising my young ones. Always loved rocking them to sleep before putting them in bed. I also had plenty of use from it for myself. LOL

Supposed be cooler and less humid here in MN today. I plan to get out of the house and get some errands done. Hopefully.

rlh1974 profile image
rlh1974 in reply to KrittyKat60

Cooler YES!!!!! I was just on the deck! It is at the chilly point in the shade!!!!!!!!!

As far as the chair. My son has an engineering mind, I have been a mechanic or in the field for 30+ years. We will fix this damn thing! My friends don't call me Scotty for no reason! I am blessed by your laugh today! I need it. A ton of pain today. Because of doing too much, and when the chair didn't work. who do you think was up under it trying to figure it out at 10pm last night. Three guesses and the first 2 don't count!

Rob

rlh1974 profile image
rlh1974 in reply to KrittyKat60

Well, my new recliner broke!!!!! And by the end of the day, there was a dog crate and a foster dog in its place!!! Whaaa!?

KrittyKat60 profile image
KrittyKat60 in reply to rlh1974

@rlh1974

LOL I know exactly who was under that chair. Too bad it wasn't under a warranty so you could have replaced it.

KrittyKat60 profile image
KrittyKat60 in reply to rlh1974

@rlh1974

So no recliner now? Instead you have crate and dog that has nothing to do with reclining or massaging. Hmmmm Whaaaa!! That's just messed up. Hope you feel better soon. I'm having a high fatigue day myself today and I have no reason other than lack of good sleep to contribute the extra fatigue to. 😡😡

rlh1974 profile image
rlh1974 in reply to KrittyKat60

I got to move the dog crate. And the as is as shown outlet, actually exchanged my recliner!!!! We purchased the ripped one for an extra $150 off! When we got there, they said since I was so nice and didn't get mad at them and recognized it was final sale. They didn't even charge me the difference! It's just power up and down. And head rest no message. That would hurt my back!

Morllyn profile image
Morllyn

If I am feeling good then I will usually go out and do some work in the yard/garden (in warm/hot weather). Yes I may feel terrible that evening and/or the next day or two but if I stay in and sit, playing on my iPad, I will never get out again. I would usually rather do what I can when I can. There are less days that I feel well enough to do as much as I used to though.

I know that when cold weather comes then I will seldom go out.

kdali profile image
kdali

Sorry about the steroids, they are no treat without diabetes 😞 There's always a price to pay! Sometimes I fool myself too because it's nice to live a bit more normal.

Karen-x profile image
Karen-x

Ding dong! Learn your lesson?

Hope the steroids help!

rlh1974 profile image
rlh1974 in reply to Karen-x

Karen-x Smart ass! HAHAHA!

Karen-x profile image
Karen-x in reply to rlh1974

Hey. I'm not much better. Had a horrible night last night. Has a seizure, wanted to stick an ice pick through my eye and decided the notion of God was ridiculous. ToNight, I realized why.....I forgot my seizure meds last night......

kdali profile image
kdali in reply to Karen-x

Oh no, that's horrible! 😞

rlh1974 profile image
rlh1974 in reply to Karen-x

Too many meds!!!! Ahhhhh! I'm praying for you! Thanks for not sticking an ice pick in your eye! We would miss you!!!

ssdw1958 profile image
ssdw1958

rlh1974 if I have the right person and you are the one whose chair has broken on my chair my insurance paid half and I found out they would from the medical store that sold the chair

The store I go through they have found out all the information I needed if have to I would call your insurance company be for your insurance runs out.

I wanted to give you that information before I forgot

Especially where I forget things you know how that goes good luck

rlh1974 profile image
rlh1974 in reply to ssdw1958

That would be an awesome route to go if needed, I will keep that in mind!!!!! I can actually be a truly nice when I need to. I called the store. Said I know this is clearance and as is. All sales final! I would be willing to bring it back and and pay the difference for the unripped one they had. The sales lady we dealt with said. ABSOLUTELY! So my son and friend loaded it up and took it back. I made sure the new one operated perfectly and said let's do this. She said, there is no extra charge just take it! You didn't yell and said you knew you should have checked it out better. Also, we advertised it as working. So don't worry! I was in shock! I wish I had $20 in my pocket. I would have tipped her! It was an amazing experience and gift! I got a $700 chair for less than $350! Was an amazing blessing! Oh and the dog crate got moved! 😄 now praying someone takes this sweet animal and gives her a forever home!!!!!

Thanks!!!!!!

Rob

KrittyKat60 profile image
KrittyKat60 in reply to rlh1974

@rlh1974

Hi Rob. I'm so glad that you were able to get that chair replaced and are now enjoying it. Congratulations. I wish all exchanges could be that easy and done so quickly. Better relaxed days ahead for you.

Have a great Thursday.

KrittyKat58

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