Category Archives: MS related

OMG sort of day

G had to postpone her staple removal to yesterday due to the snowstorm. She had a lot of staples in her knee and was crazy ready for them to come out.

After we left her doctor’s office, we went to the pharmacy to pick up her antibiotics and pain medication. She needs a delicate, light pain med or she’s off to lala land.

From there we came home and got her back into her house safe and sound.

Then I had to load Gavin into the car and take him to the vet’s office for his suture removal. That’s lifting 65 pounds of unwilling dog into the back of a van and coaxing him into a crate. It’s also lifting 65 lbs out, back in, and once home, out again and up the front steps.

What back pain…oh, you mean that…

Then after attempting to lift the downed Curmudgeon into his bed too many times tonight, I had to call 911 for help.

The guys from the nearby fire station know the routine pretty well and I was happy to see the familiar faces of the guys who were so sweet this summer and went over to G’s to get the AC she had and install it in my window. They always assure me it’s no problem to come and help him up when he has a bad day.

I’ve not been the nicest person to him, mainly because each demand he makes of me hasn’t helped my back pain. And each demand he’s made has been as soon as I’ve settled into a position where my back doesn’t hurt quite so bad.

Seriously, if I hit the lottery I am out of here. I cannot take much more without completely destroying my own mental and physical health. I’d leave him with a trust fund for his care but I am not now nor have I ever been a nurse. Being a nurse was never my career choice. Never. I am not the sort of person who can do the job, it is not a part of my being.

I can tile a floor and walls. I can break and train horses. Train and show dogs. Write. Garden. I have the credentials for veterinary assistant. I’ve done retail management and all sorts of office work.

I have NEVER had the desire to be a nurse.

Anyone wanting the job is welcome to it.

need-something-stronger-for-the-bs

And so it goes on…

Life was a bit easier here at casa Doggonedmysteries this day.

He woke and got up without a problem.

I think even the house breathed a sigh of relief. I know I was holding my breath waiting to see what this day would bring.

Yes, he drives me completely crazy, but when he’s down for the count, it’s worse.

pincushion

They arrive with greater frequency

These bad days of his show up more often and last longer than they used to. It kills me to see him helpless and in bed. He doesn’t deserve this. No one does.

He had a horrible day today.

I can’t lift him from floor if he goes down. I can’t lift him into his bed.

My body has its own problems, some connected with being his caregiver. Some connected to the years I broke horses and rode trails. If my father had known how often I got thrown, I wouldn’t have had my horse for long. Although she wasn’t who I got thrown from. It was the horses the stable owner let me break and train that almost killed me a few times. At that age I was fearless and resilient.

I didn’t care that I’d pay for it later.

Time to dig out the tens machine again, being a caregiver today took its toll on my back.

Today’s Tee shirt

HPIM4775

 

 

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.

1003161634

 

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?

08151620102

 

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