Category Archives: MS related
Curmudgeon update
Yesterday, The Curmudgeon showed a few signs of improvement. He drove his truck. He left me sleep.
After I’d taken care of the dogs early in the morning and he woke up, I told him I was going to go sleep in my bed until I had to get up to take him to his appointment. I was beyond cranky and tired.
I dutifully set my alarm so I didn’t sleep too late to get him to his appointment. When the alarm went off, I dressed and came downstairs to find him gone. His truck gone too.
He’d taken G to pick up her vehicle at the repair shop and got home in time for us to head out for his appointment at the dentist. He was a bit worse for the wear but not as bad as he would’ve been a week ago.
When we went to his appointment he was back on the walker, that little trip took a lot out of him. But that’s okay, it showed him that he’s improved a bit.
You all have a good one.
The MS curse
After much jangling about of our nerves all morning and well into the afternoon, and a long-winded, confusing, round about CYA conversation with an admin flunky, the hospital sent The Curmudgeon home.
No, they did not send him home with G and I after we waited around for a few hours.
Yes, they waited to break the news to him until after we’d gone to run errands and go home.
No, I was not a happy camper when I arrived home to 5 messages on the answering machine, 4 from The Curmudgeon and 1 from the admin flunky.
No, I wasn’t going to jump into my car and dash back over during rush hour to get him.
Yes, I was out of sorts, my back was killing me and I hadn’t sat down in hours.
Thank goodness for cooler head of The Curmudgeon’s best friend, who, after I begged him for help, was the one who brought The Curmudgeon home.
Funny how ALL the rehab hospitals refused him because of his expensive specialty medications. Funny how NO help is forthcoming from anyone.
Real funny how poorly this Multiple Sclerosis patient has been treated by everyone involved in his (lack of proper) care at St. Luke’s University Health Network http://www.slhn.org/
It is difficult enough to deal with your loved one falling apart, but to have no help is frustrating as hell. I think I’ve lost my sense of humor.
Is it any wonder that over 70 percent of MS marriages end in divorce?
I love him…but…
I go for a stress test today, I think I’ll pass with flying colors after this past week of crap.
I miss this man.
MS sucks big time
I’ve said it many times and many ways before. Multiple Sclerosis sucks and secondary progressive MS sucks even more.
Had The Curmudgeon been a normal healthy person he probably would not have lost his balance on the back porch steps while dodging a carpenter bee.
He is still in the hospital. He still has a chest tube in and he is improving a little at a time.
Today we found him more alert and his color was a lot better.
Tomorrow he’ll have to be happy with a phone call instead of a visit, I really need to get some stuff done here at home.
If I had a couple of willing slaves …er volunteers to come and help move some furniture and electronics around while he’s not here. I’d love to surprise him by having his chair and TV moved to where he’ll be happier.
Grumble growl
Another bad day here at Casa Doggonedmysteries. The Curmudgeon forgot to take some of his medications the night before and the result was enough weakness that he had to wake me early and spend the rest of the day in bed.
Ah, yes. Waking me early means I get maybe a couple hours of sleep. It means I need to be heavily caffeinated. It means I am a real cranky pants. Not a nice person.
What should’ve taken me a couple of hours to do took me all day because I was playing nurse, and errand boy while trying to rake up the magnolia tree petals. And even though I got up many 30 gallon trash barrels full, after the wind we had later, it looks like I did nothing.
I am so freaking tired!
Happy Beltane all.
Is there an answer?
When one reaches the end of the rope what comes next?
Do you fall?
Do you grab another rope?
Do you grow wings and fly?
I wish I had the answer because I can see the frayed end getting closer each day.
Run run run away…
As many a caregiver give will tell you, or not (because they won’t admit it to themselves), there are days where you truly want to pack it in and just leave. Believe me, If I’d had the money to be able to do it, I would’ve been gone yesterday.
It was a crazy “I am beyond overwhelmed day” for me. Even the small stuff had me ready to explode. Maybe it stems from being closed in with The Curmudgeon for well over a week.
Yes, I need to get out of here even if it is only for an hour or two.
Well, that didn’t work.
So much for the Acthar. He swears that once he did each injection, he felt worse soon afterwards. This is not good. He called his Neurologist and she agreed that he should stop it.
Now what?
I have no idea.
I have a ringside seat to this show and I don’t want it.
It tears me apart to watch this man struggle daily. The way it shreds my heart makes me believe that one day I won’t have one left.
Today’s shirt:
Slight improvement…he’s not sure.
Slight improvement yesterday. Yay! Even a slight improvement is better than none. I wasn’t awakened by an emergency call from The Curmudgeon. Instead, he’d taken care of the dogs and himself. Then he did his shot and it shot him to hell so he’s not sure it is helping.
I got some much-needed sleep and no adrenalin jolts to wake me.
Yesterday’s shirt.
Day two of the steroid treatment
Started out with getting him up off the kitchen floor. Then later off the bathroom floor and into bed. Thank goodness for my neighbor’s youngest son who helped me get The Curmudgeon up and into bed.
Seriously think we should get a hospital bed for him so he can be more comfortable when he has bad days and has to stay upstairs in bed. Don’t have any idea how to even begin that process.
A lottery win would buy us a house he could navigate easier that’s for sure. This house is NOT easy on him.
You all have a good one. I’m going to go curl up on the couch with Lucy and a good book on my Kindle. I need some quiet time.
I don’t want to know how much the medication costs, please don’t tell me.
I should’ve known that when the phone rang early in the morning and the caller ID showed his neurologist’s name that it wasn’t going to be a good day.
His neurologist asked him to come in any time before 4. We went in. His MRI showed worsening plaques on his brain. She told him, “it wasn’t pretty.”
Now he has 5 injections…well, 4 to go, at one a day, since he did one already in the office with a nurse and a PA watching to make sure he hadn’t forgotten how to do an injection. He’s on 5 days of Acthar, a steroid treatment. That’s one vial at over $1,000.00. (Yep, my jaw hit the floor. So glad they ‘work these things out’)
We’d sure like to hear some good news for a change but it doesn’t look like that’s going to happen any time soon. It’s as likely as a lottery win, a repaired porch, Yard Crashers, or surprise house painters and cleaners showing up at our front door. As likely as any sort of help showing up for that matter.
Stress level: High
I have no fucks left to give.
Too long a day…
He woke me yesterday morning with an adrenalin jolt–he’d fallen. So, not much sleep, adrenalin jumpy, stressed out, and not so ready to take him for his MRI appointment, off we went at 1p.m.
At the hospital, him falling on the way in, me grabbing a wheelchair to get him up an inside the building, having to maneuver it (with his walker in tow) to get him to his appointment. Then running the walker out to the car, back in to sit and wait for him… we finally made it home around 3.
I got him in the house and then G and I hit the farmers market.
We sampled some wine at Clover Hill Vineyards & Winery, I bought some Niagra–scrumptious for a sweet wine which I was in the mood for probably because of stress.
We did our usual twice around the market and bought other things too like smoked sausage and pimento cheese spread…
Back home we drank some spiced apple wine from Clover Hill and munched some crackers with the pimento cheese spread.
Before I went to bed, I’d mixed up a meatloaf and put it in a pan in the fridge, so glad I did. All I had to do for our dinner was toss the pan in the oven for an hour. A little salad, some mashed potatoes and veggies VOILA! Dinner.
You’ll find me curled up on the couch with Lucy…
I hope somebody out there had a good one.
A day without his Tecfidera is like hell
He started out poor but able to take the dogs out in the morning. By the time I got up he was already having difficulty walking.
A few hours later we were off to our wellness appointments with our doctor. He was not walking well and actually fell in the office rest room. (This I find out later on.) The doctor ran a blood test they tried to get a urine test done but he couldn’t go so I had to run back to them later with a sample.
By dinnertime he was down to using a pee bottle and having the pad on his chair again. There was no walking without a walker. And this is just the first 24 hours.
I’m seriously in need of a lottery win and… 
Doggonedmysteries 