Category Archives: MS related
Where is the deep end and how far do I have to jump?
So another day where I was on the go went by with me not getting anything else done.
Took Lucy to the vet for a wellness check and two shots for which she was due. I know she’s getting too chunky and have often scolded The Curmudgeon for giving her pieces of his molasses cookies. Proof, she’s gained seven pounds since her last visit.
Yeah, she’s going walking with me when we get decent walking weather.
I swear if a black cloud could aim for over our house it most assuredly has done that. We got a phone call from The Curmudgeon’s neurologist. According to his blood work, he has to stop taking the Tecfidera immediately.
This is the medication that improved his walking so much. He’s to have monthly blood tests now. He is also to have a new MRI done of his head. He is off all MS medications for the time being since they aren’t going to put him back on the Avonex. This is terrifying and devastating all at once. We have no clue what is going to happen from here.
I need that lottery win more than ever. He needs better care than I can give him. A whopping win would take care of that and buy me a little house on a beach somewhere. If I don’t go live on a beach for the rest of my life, I’ll need a rubber room and restraints.
I hear it’s normal to want to run away…
It breaks my heart when The Curmudgeon has a bad day as he did yesterday. I also get angry. Angry at his Multiple Sclerosis and angry at him.
The disease for taking a strong man and destroying all that he once was.
Him for giving up and not fighting back. For sitting in his damned chair every day and letting the freaking disease beat him.
I wish we had a light at the end of the tunnel but we know there isn’t an end to this tunnel. Thus no light ahead of us.
Secondary progressive MS is not like cancer where you can cut away at it, radiate it, bombard it with chemo-therapy, and have some hope of regaining your life.
Yes, we have more days of hopelessness than hope.
Winter makes it ten times more depressing to be him and to be the person who loves him watching him fade away.
Somewhere there’s a beach house with my name on it. Heck, I’d take a beach shack these days.
There wasn’t enough coffee in the world.
I had one of those toss and turn, OMG-am-I-ever-going-to-fall-asleep? nights. Only to have The Curmudgeon call me on the intercom two minutes after I finally fell asleep.
“I can’t take care of the dogs today.”
“OMFG! Really? Why does this always effing happen when I’ve had NO sleep?!”
No, I didn’t get a nap to make up for it after the dogs were taken care of, instead I had to make a grocery store run and after that no one would let me sleep.
Therefore, this is all you’re getting. It’s after midnight and I am going to make a full on attempt to get some sleep.
What? Again?
Yeah, Tuesday I drove The Curmudgeon to his pain management appointment. They forgot and only gave him one of his three months of prescriptions which we didn’t see until after we got home. Therefore yesterday, I had to take him back there to get his other two prescriptions.
This happens far too often.
The Curmudgeon was not a happy camper.
Improvement?
Day three of The Curmudgeon staying in bed. He moved a tad better and managed a shower. He even went downstairs early in the morning, let the dogs out and fed them. Keeping my fingers crossed that he continues to improve.
Lucy made sure to cuddle with him whenever she got a chance.
He did some clowning around for me so I could show you part of this year’s Halloween costume. Got to love a silly man.
Calling Nurse Lucy.
So far, The Curmudgeon has spent two days in bed. This is not a good thing. Yesterday, he was a bit better than the day before. He’s nowhere near ready to be back downstairs.
Lucy missed her Daddy and kept poking around the gate on the stairs any chance she got. This evening, after dinner, I leashed her and took her upstairs to see him. Once she saw him on his bed, she started wagging her tail like crazy. I lifted her on the bed and she snuggled right down on top of him. Our little bully nurse.
Gavin doesn’t even notice his daddy isn’t downstairs.
I am hoping against hope that The Curmudgeon is feeling a lot better when he wakes up today.
You all have a good one!
She’s looking forward to him back in his chair so she can snuggle like this.
Strange day. Thank you effing MS.
I headed to bed at three in the morning, early for a change. I thought, “Ah hah! I will sleep well and be up in time to relax with my coffee before G and I go out to lunch.”
I should have known better. Any time I make plans The Curmudgeon’s MS rears its ugly head and flings my plans to the four winds. Just dozing off, I hear him calling me. (Crap!) Bounding out of bed, dashing down the hallway my blood pressure jacked through the roof, I find him unable to move. Scared to death, I screamed at him. My language consisted of expletives and I sounded like an educated sailor.
Yeah, I’m an idiot. I am NOT a nurse. I was scared out of my mind.
He had to pee. I cussed some more and helped him with his pee bottle. Then I went back to bed. Just barely begin to doze off when he’s calling for me again for the same reason.
I am not a nice person. I am not prepared to do this. I have no help at all. There is no one who actually gives a shit about us, other than G, nearby and I can’t ask her for help she’s still raw from losing her husband to cancer.
G is the only reason I managed to keep my sanity. She took me to lunch anyway even though I was not sure if I should leave him alone. I didn’t realize how much I needed to get out and away until I went.
Upon returning home, a nicer person appeared.
You all have a good one.
I’ll try to keep my sanity…
Lovely day
Hurrah, cooler weather! Just what The Curmudgeon needs to feel a bit better after several days of hot and humid misery.
We hit a high of 78 and a low of 63. Perfect.
Although his spinal injury on top of his MS does make walking around difficult, the cool drier air makes a big difference in how he feels in general.
I like that I can wear my overalls in comfort again. I can work in the yard and the mosquitoes can’t get at my skin so easily.
The pups love the cooler weather too. It even makes 12 year-old Gavin perky and energetic.
Updates on The Curmudgeon
A lovely 64 degrees at a little past midnight. I do love cool nights they make for good sleeping.
Someone please explain how I pulled a stomach muscle yesterday. It has a lot to do with owning two bull terriers. 😀
A dinner of beer battered codfish, fried to a perfect golden brown, and served with french fries, made The Curmudgeon very happy.
He needs some happy, the neurosurgeon said there is nothing they can do for him. The damage is too bad and whatever they did would only make it worse.
I’ve been worried about him, he’s been looking rather thin. I was right, he told me that they weighed him at the neurosurgeon’s office and he is the lightest he’s ever been since before I met him back in 1971. This is not a good thing him being underweight. I wish it were me taking off the pounds. He can’t afford to.
I don’t know what we’re going to do now. He’s in constant pain and his pain medications are not giving him much relief. He’s falling into another deep depression, I’m thinking they’ll need to adjust his antidepressants.
I appeal to his friends to please come see him, he needs to have his mind taken off his pain and company is a wonderful distraction for him.
Waiting for MRI results again
We had to go to the hospital for The Curmudgeon to get an MRI of his thoracic spine. So glad I took my Kindle along since they took him in fast and I was left sitting in the waiting room. With the Kindle the time passed quickly.
The Neurologist told The Curmudgeon he can’t drive until she sees the results of his latest MRI. He’s not thrilled. If she takes his driving license away we’ll sell the truck. We can use the bucks and we can save all that insurance money that we shell out for it.
Doggonedmysteries 