Category Archives: MS related
Ampyra week two
Posted by doggonedmysteries
DH is walking better but as a result is pushing himself harder. It must be a man thing. Is it? Can anyone explain to me why he pushes himself beyond his limits all the time?
Today he mowed the grass. He uses a riding mower or couldn’t do it. The mower decided to up the ante on his energy expenditure by getting a flat tire. I came outside to find him trying to tip the gigantic mower on its side and slide a couple of bricks under it so he could fill the tire. Whoa, whoa there sir just ask me and I’d be glad to help, which I did.
Stubborn man. Heaven knows I love him with all my heart. However, some days ya just wanna kill them don’t ya gals? Sorry guys but it is true. I’m sure you feel the same way about us.
At least he is walking better and so far, (knock on wood) he has no side effects. We hope that continues. I can’t wait to see what his neurologist has to say at his next appointment.
Posted in MS related, My blog, Writer, Writing
Tags: 4-Aminopyridine, Acorda Therapeutics, Author, Biogen Idec, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Consumer Information, Craft of writing, Dead, Disability, Doggoned, Energy, Family, Fiction, Home, Lawn and Garden, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
Ampyra the first week
Posted by doggonedmysteries
After two days, DH said he had a side effect, his nose was itchy. He said if that was all he got he could live with it. By day three, he seemed to walk more than he has of late. He’s spent more time outside with the dogs too. This is encouraging.
I just hope he doesn’t push himself too hard before he used to moving about more. We had a new futon mattress arrive this morning and he managed to get it upstairs and get the old one down before I woke. I’m not certain if it had anything to do with the Ampyra or merely his stubbornness in not asking for help.
Watching him walk around I see that he seems a bit steadier on his feet and doesn’t toddle about as slow as before. Again, I’m not certain if it’s the drug helping or not. I’ll withhold my judgment for a while.
Posted in MS related, My blog, Writer, Writing
Tags: Ampyra, Ampyra approved, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, New MS drug Ampyra, Novel writing, Writer, Writing
DH is getting the Ampyra!
Posted by doggonedmysteries
At least three letters, the neurologist’s intervention, and dozens of phone calls and faxes later, DH will get his Ampyra. What a total cluster f*** that was. Now, if it works, and he walks better he will be over the moon.
However, they only approved his meds for six months. I’m betting we’ll have to go through the whole dance routine again when that rolls around. Oh, what fun that will be…NOT! I can’t understand the whole process. They make you jump through enough hoops to qualify as a circus act and then they have the nerve to tell you yeah, you can have it, but only for six months.
Why? His condition isn’t going to change except maybe for the better and yet you want to toss him in the trash in six months? This sort of thing sucks.
From the looks of it, even if there are sweeping changes in our health care system, there will always be someone denied the proper care or medications.
Posted in MS related, My blog
Tags: Ampyra, Ampyra approved, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, drug plans red tape, Family, Fiction, Healthcare, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
It’s a racket I tell ya.
Posted by doggonedmysteries
Their stock is up. Their profits are way up. They are making money hand over fist. I can tell you the why of it too. They now cover fewer drugs, they routinely deny drugs to patients, and they raised the co-pay at least 15%. Can’t help but make a profit when you gouge more and spend less.
The Chairman and CEO, age 55, makes a whopping $1,300,000 yearly salary. I’m betting that if he needs a drug for some illness, he doesn’t have to worry about how to pay for it. The President and COO, Age 56, makes a tidy $810,872 a year. He doesn’t worry either. The SVP Finance and CFO, Age 52, makes $548,560 a year, another one who has no worries about where he’d find the money to pay for a prescription.
Yowza, if we had that sort of money coming in each year we wouldn’t worry either. Ampyra is a new drug. It is a costly drug. Why would they want to nick their profit margin a bit? They live well. They have no worries. Why bother helping out the little guy?
DH’s neurologists want him on Ampyra. It’s a quality of life thing. DH struggles to walk every day. Some days he walks better than other days. However, now it is summer and the heat (especially the record-breaking heat we’re having) makes him worse. Guaranteed, if Mr. Chairman and CEO with the $1,300,000 yearly salary had the same problem, he’d get Ampyra tomorrow.
Posted in MS related, Writer, Writing
Tags: Ampyra, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Healthcare, Home, Life, Love, Medical insurance lies, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, prescription programs, Profit margins, Writer, Writing
Ampyra approved then taken away
Posted by doggonedmysteries
Well this sucks big time. We were told by a certain health plan that DH was approved for Ampyra and today we got a letter from the same people telling us that he is not approved. You know what, I hate making phone calls. In spite of this, someone has some ‘splaining to do.
Phones are going to be ringing and when I’m finished, I’m betting a few ears will be too. Angry doesn’t describe how I feel right now. I won’t tolerate this sort of treatment. I will fight tooth and nail for DH. No one EVER pulls the rug out from under my loved ones like that. I don’t care whom it is I have to run to ground I will get results.
DH has always said, “Don’t get the Irish Indian mad she will go on the warpath.”
I am past mad and well down the road to infuriated. If I have to go all the way to the top of the company, I will do that. I can make waves, big ones. I am a writer.
Posted in MS related, Writer, Writing
Tags: Ampyra, Author, Beads, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Coffee, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Healthcare, Home, Life, Love, Medical insurance lies, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
Ampyra authorization
Posted by doggonedmysteries
The approval came through for DH’s prescription of Ampyra. Now we are waiting for it to arrive. We do this with a mix of hope and fear. We hope it works. If DH is lucky, the drug will help him to walk better. We are concerned about side effects.
DH walks with a cane and at times, he should use a walker. He refuses to do that at present. I can understand it. I have wished that he wasn’t so stubborn about it a few times. He has accepted the use of a handicap cart outside so he can walk the dogs in the mornings. He will also use an electric cart in stores because he knows he can’t walk the distances he’d have to there.
Dealing with MS for him is a constant battle. DH has a long and wide stubborn streak in him. At times, it’s a pain in the asterisk. However, in the MS combat zone it pays.
Yes for him it is combat. MS is not a blessing, not a challenge, but a battle to fight and win. He’s never been one to back down from a fight.
Posted in MS related, My blog, Writer, Writing
Tags: Ampyra approved, Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fampridine is now Ampyra, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
Ampyra formerly known as Fampridine
Posted by doggonedmysteries
Ampyra was FDA approved back in January. Today the neurologist’s physician assistant talked to DH about putting him on Ampyra. Funny, when I mentioned to his neurologist the last time I was along, he didn’t seem to know WTF I was talking about then. To me this means I’m probably one-step ahead of him.
DH is the love of my life, my soul mate. Do you think I don’t try to keep on top of everything out there for MS? I do daily research. I read articles on MS treatments from all over the world. I keep track of the progress of clinical trials and any new drugs that show promise.
They list 14 of ‘the most common side effects’ of Ampyra. Yes, a few of them are scary but then his secondary progressive MS is overwhelmingly terrifying. To DH it’s a case of choosing between struggling to walk and improved walking. He wants to walk.
He isn’t taking it yet. They are checking to see if his drug plan covers it or not before prescribing it. Knowing his drug plan, he’ll probably have to fight for it.
Posted in MS related, My blog, Writer, Writing
Tags: Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Healthcare, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
DH and the dogs are air-conditioned couch potatoes
Posted by doggonedmysteries
I have one empty pot sitting out on the walk. I’m trying to figure out what sort of vegetable I’d like to put in it. Sure, I could do flowers but I so love fresh veggies. Maybe I’ll pick up some beet seeds and try them in the pot. I used to grow them in my garden when I had a huge veggie garden. We’ll see.
After the rains, we had yesterday and last night, all the veggies, whether in pots or by the back fence, have doubled in size. I found it rather surprising since I’ve watered them every day. Unfortunately, two of the patty-pan squash blossoms fell off…Sigh.
The southern flow of high heat and humidity has worn DH down to a nub. He’s barely functioning after he goes outside. The air conditioners are on and running for him. Heck, even the dogs are happier inside. They’ve become air-conditioned couch potatoes already.
We are both looking forward to the cooler temperatures and lower humidity heading our way from the north. It will be nice to be able to weed the gardens without having to take a million water breaks.
Posted in Dog related, MS related, my garden, Weather related, Writer, Writing
Tags: Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Gardening, Gardens, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
There’s still romance
Posted by doggonedmysteries
Thirty-seven years and there’s still romance in our marriage. Life has been hectic for both DH and me over the last several months…um, years even. We haven’t seemed to have much time to take a breath, relax, and simply enjoy each other. However, once in a while….
It had drizzled all day but around seven, the sky cleared. After weeding the gardens, I set the new hammock up since the weather reports have indicated several dry days heading our way. DH came out to see what I was doing.
The hammock is a huge rope one, almost as wide as I am tall and quite long. DH decided to try it out. He sprawled out in it and looked deliriously happy and comfortable.
“Move over,” I said and joined him.
“The pillow is too small to share.”
“That’s okay I’ll use you.” I rested my head on his shoulder.
He snuggled closer and we scanned the sky to catch the first star.
After a while I said, “I like this.”
“I’m glad you bought the hammock.” He kissed the top of my head. “I missed doing this.”
“Me too.”
We stayed there until all the stars looked down at us.
Posted in Misc, MS related, My blog, Writer, Writing
Tags: Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Romance, Writer, Writing
Tomorrow I’ll do the bills
Posted by doggonedmysteries
Today was a perfect day to place my butt in the chair and write. I couldn’t go out and play in the garden because we had a constant drizzle of rain all day. DH had the dogs pretty well worn out when I got up. The only other thing that screamed for attention was to pay the bills.
Do the bills or write? Bills or write? No contest there. I poured some coffee, turned on the computer, pulled up three of my books and began my juggling act. A paragraph here, another one there, some dialogue in the third, I was humming along and then the phone rang.
The mother-in-law, DH had to run over to her house for another ‘only her son can take care of it’ situation. Here we go again. I knew he’d come home exhausted. While he was gone, I made sure the dogs went out, twice. I decided what to make for dinner—something that would take long enough for him to squeeze in a nap when he got home.
An hour and a half later, he dragged through the door. I sent him up for a nap and crated the dogs so they’d be quiet. Both dogs passed out, snores emanated from the crate within minutes. Oh, yeah he’d tired them out for sure. I set a timer to stop me when I needed to start dinner then went back to the computer to do more writing.
Posted in MS related, My blog, Writer, Writing
Tags: Author, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
Just when we think things are looking up…
Posted by doggonedmysteries
Splat! Another disaster hits. DH’s mother is back in the hospital. I may or may not be posting over the next week. I hope I will but that all depends on how much rest we get around here. Knowing his mother and Aunt, we won’t get much.
His Aunt phoned us about twenty times today. We got a little tired of telling her we had no news and probably won’t have any until tomorrow afternoon. (That would be later today, since I am typing this at 1:30 a.m.)
So much for having any time to get things done, we needed to do this week. It looks like we’ll be rushing around again. A list, I need to make a list…
Posted in Misc, MS related, My blog, Writer, Writing
Tags: Author, Beads, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Coffee, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Healthcare, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
A salon day—just what the doctor ordered
Posted by doggonedmysteries
The way things were going this week, I thought I’d have to cancel my hair appointment. However, DH was feeling much better today, still a little off balance but up and walking. He woke me this morning before my alarm went off to remind me I had a hair appointment at noon.
I blearily wandered downstairs to find a cup of coffee all poured and ready for me. He’d even turned my computer on for me to start my normal daily routine. He’s such a dear, dear man.
If only the weather had been more cooperative. We had rain, lots of rain and wind gusts of 30 mph. Fifteen minutes before my appointment, I dashed out the door to my car. An hour later I returned home refreshed, relaxed, and with shorter hair.
DH loved my hair. The dogs had been angels for him. My stress level had dropped to minimum and had the sun been out it would’ve been a perfect day.
They say we’ll have sun by Tuesday. I hope so because if the rain continues beyond that, we’ll have to build a freaking ark.
Posted in Misc, MS related, Writer, Writing
Tags: Author, Beads, Bones, books, Books on writing, Bull Terriers, Care giving, Caregiver, Coffee, Craft of writing, Dead, Disability, Doggoned, Family, Fiction, Home, Life, Love, MS, Multiple Sclerosis, Murder, Mysteries, Mystery, Novel writing, Writer, Writing
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