Category Archives: MS related

That’s another hour I’ll never get back

It takes me over an hour to set up The Curmudgeon’s pills for the month. I’m not counting how long I stand in line to get all his medications.

Did two days early on and did all of the rest last night.

I was waiting for a prescription to get filled. Had to pick it up yesterday. I do believe I spend half of my time at our local CVS.

Seriously folks, if you take a lot of medications in a day go get this at Amazon.com. It makes things so much easier.

pill caddy

This isn’t the Wonderland I’d like to be in

It’s difficult to watch this man fall apart more each day.

We’ve been married for 43 years and together for two years before that.

We had our ups and downs but this has been a very long down since his diagnosis in 1989. It’s difficult when you no longer have any ups.

The fall down this rabbit hole is far from pleasant and when you hit the bottom, you realize that yes, things can get worse.

There is no bouncing back. This is not relapsing remitting MS. This is that long, slow fall down the rabbit hole into a Wonderland that has gone bad.

I hug my bull terrier

 

 

Back on the Ampyra after only two days…

The Curmudgeon had such a bad day that I almost canceled my hair appointment but he bade me go ahead.

He put in a call to his neurologist about his Ampyra. He could barely walk and that frightens him. He’d rather have poorly functioning kidneys than not be able to walk.

They called back early in the evening and told him he could go back on Ampyra.

One dose into his system and he’s feeling better.

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Welcome to my hell

So now his kidneys aren’t functioning right.

They had him stop taking his Ampyra which is the pill that makes it so he can walk. They also had him stop taking his Celebrex that stops the severe pain in his back from arthritis in there.

Until the Nephrologist sees him IN JANUARY.

Imagine his hell–all that pain and not being able to walk again. For at least 2 1/2 months! Maybe longer if they take him off the medications permanently.

And then there’s my hell…I don’t have any help so when he can’t walk, I have to move him and I am not a young person without health problems.

When he’s moaning and groaning in pain, I can’t help him.

I can’t leave him alone and yet I still have grocery shopping to do and all the rest of the upkeep of the house. Can you say beyond overwhelmed?

It’s no wonder to me why there is such a high divorce rate in patients with MS.

and-we-have-a-runner

Shot reaction

Seems MS rears its ugly head at the worst times for any reason under the sun.

This time as a bad reaction to The Curmudgeon’s pneumonia shot.

One shot resulted in two days of not being able to get out of his bed and four days of profound weakness.

This insidious disease takes more of him as each day passes.

The Curmudgeon’s Tee shirt today

Jay's shirt

I hate visiting nurses too young to know they know nothing.

Not looking forward to the visiting nurse from the MS society. She’s coming today.

Last time this nit-wit visited I was ready to take a two by four to her head. She is a complete idiot. I think she’s like 12 years old and has an opinion on everything. Most of which is wrong and out of line.

Actually I have little use for most nurses. My older sister, the idiot, is one and she has absolutely no common sense. I find this all too often in that profession. (My apologies to the few good nurses I know.)

I hope someone will post bail….

well read woman

 

He struggled yesterday

It was hard to watch how much The Curmudgeon struggled to stay upright.

I cry every night after he goes up to bed.

I find myself pushing him away, distancing myself and I get so angry all the time.

I’m not a nice person.

I used to be a nice person.

old gals still rock

Patinum Guarantee

The Curmudgeon’s lounge chair is very important to him, it’s where he spends most of his time.

Therefore, we paid for a platinum guarantee on it when we bought it. So glad we did. So far they have replaced the chair twice and repaired it three times.

They are replacing it again. This time the foot rest mechanism broke.

Lazy Boy, they stand behind their products.

Gee, I wonder if they’ll pay me for this?

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Bite me MS Society

So The Curmudgeon gets this MS society magazine every month. He didn’t subscribe to it, they just send it.

He never reads it, but once in a while I’ll skim through it.

Most of the articles are laughable in their ‘you can do it’ approach to life with MS.

When you are secondary progressive MS and have had MS as long as he has had it, there comes a time when no matter how much you want to, you can’t do it.

Then there are the ridiculous caregiver articles.

“Take care of yourself” Yeah, if I can find the time and energy. I do this all by myself. They don’t volunteer to come and clean my house, clear out the mess the roofer made of my attic, clear out my basement, change the wheels on his mobility cart, or clean up my yard.

I take care of him and two dogs. I have to sneak in my showers and going for groceries is a major production that I try to make it my day out with G.

That way I can hit the ground running and go until I drop.

I can’t even take care of the house. It continues to get dirtier by the day. I look at it and feel so overwhelmed all I want to do is curl up in a corner and cry.

But I can’t do that because I have to cook his dinner, feed the dogs, take them out, do the dishes…

Today’s Tee shirt

suck it up buttercup

Nothing like a night time ER run

So, Lucy and I were cuddling on the couch (read that as ‘we were dozing’) when a sudden *CRASH* from upstairs rattled the house.

With heart racing I dashed up the steps hollering, “are you okay? WTF happened?”

Found The Curmudgeon down, wedged between his bed and his walker.

Then I saw the blood.

You know how facial and scalp cuts bleed like crazy?

Yep.

I ran for paper towels slapped them on the side of his face told him, “you know what to do…put pressure on it. You’re going to need stitches.” and ran to call our doctor’s ER to see how late they were open.

Then I got G over to help me get him into the car and to go along with us.

I was right.

Three stitches.

Alcohol suit up

 

Darkness returns

Some days even good company and fun at the mall can’t chase away the darkness.

The Curmudgeon worried me last night. He’d taken his bed time medications and remained downstairs for a half hour afterwards.

I don’t like when he does that. He gets a bit incoherent and slurs his speech. Of course, that’s when he wants to carry on a conversation and gets frustrated with me for not understanding him.

I repeatedly tell him to go to bed.

Once he goes up, well..that’s when the tears start. I mourn him every day and each day it gets harder to watch him fall apart a little more.

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They say as you get older…

Time moves faster… No kidding, it does. I can’t believe it is already August! July flew past.

Last night I sat at the table getting The Curmudgeon’s month worth of medications set up for August. So very glad I bought the monthly system for his pills. It saves me so much time, effort, and energy every month. Amazon carries it if you want one too. It also has a clock you can set to remind you to take your pills up to four different times a day–you have to buy it separately though.

pill caddy