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Sunday, May 19, 2019

AstraZeneca Pounds Home The Idea, Repeatedly




Saturday, May 18, 2019

Amazon Dropped The Ball


I have a few echo dots, great for controlling lights, listening to music and such. Most of their commercials are pretty good, meaning I don’t get mad watching them. This one however makes me mad every time I see it. As a lad I played sports year round, though she didn’t understand, or like the activities, my mother never missed being there. I did the same thing, dance shows, concerts, sports, I was always there. In this ad mom asks how was the game, as she pauses her audiobook. Really? Bad for Amazon, mom and dad should have been at the game.

Tuesday, October 9, 2018

Ocrevus A No Go, The Daughter Published Her Book, Pumpkin Pie

     I was all excited when I heard the new drug Ocrevus was available and that I was a candidate for it. I had all the pre-screening, had none of the conditions that would preclude me from getting it, I was a go. I had the first infusion in October of  '17, followed by numbers 2 and 3 in 6 month intervals. I had drunk the Kool-Aid! I let a smooth talking doctor convince me he would have me walking after the 1st infusion. What I knew, but chose to ignore, was that the medicine wasn't for secondary progressive ms, and that I was wasting my time. Would I do it again? No doubt about it, yes I would!

    The daughter had her first book published by Omnibus, Pumpkin Pie. It's a young adult work, a modern retelling of Cinderella. To say the wife and I are excited for her is an understatement! I told her I really hoped her writing would make her rich one day. She said, awww daddy, thanks. I said no, I REALLY hope you are rich one day!

Friday, July 28, 2017

Wound Care All Finishe, Orioles Giveaway

     I went for my last check up for the wound on my rear end today, everything went well, it looks like I'm finished! I had a very attractive young nurse, blond and well-built, who was under the impression that she was going to look at a wound on my leg. Imagine her surprise what I told her that it was on my rear end! I'm sure it made her day. After four weeks of bed rest my worry now is that I won't be able to recover from the lack of activity. It doesn't take long when you're as weak as I have become to have staying in bed become an issue. I suppose this means back to therapy and doing my best to get my body back in shape, sounds easier said than done, right?

   The wife and I have plans to go to the Baltimore orioles game in a couple of weeks, it's a giveaway night for a really nice Orioles blanket. Do you know how on said giveaway nights there are usually stipulations to it, anything sponsored by alcohol you need to be over 21, some things are geared towards children, this one is a senior giveaway, anyone over 55! 55? It's bad enough all the other thing is I have to deal with, now they're making me a senior at 55! I guess I don't mind, they are giving away a free blanket. I guess that's so when I sit outside and it's below 80° I can cover my legs!

Tuesday, July 18, 2017

Ocrevus, Visit From The Parents

.    I have my first infusion of Ocrevus on Friday, I can't wait! Interesting lead up to this one. Do you know how you have to battle the  insurance company for every single thing that you get? With this one what happened was that the infusion center took care of everything. The initial request was denied, they took care of the appeal and let me know when it was all finished. They must really like me, think I'm a great guy? Well anybody that knows me knows that's not true. The reason it works that way is that the infusion center pays for the medication upfront and then is reimbursed by the insurance company. They want to make sure everything is in place so they don't get left holding the bag.

    The parents and the sister came up for a long weekend. It was great to see them, they live three hours away and don't get up this way much very often. The parents are 82 and 81 in relatively good health, but showing signs of age. That's tough to see, especially when I don't see them very often. There were no major fights to report, which is always good with my family, so I'll take that as a win. They headed out this morning and I already miss them!

Saturday, July 15, 2017

Stuck In Bed With A Sore Butt, Got A New Set Of Wheels

     Long time no see, I know. I find myself with more time on my hands than I know what to do with, and that's saying something, considering how bored I am normally. I find myself in bed, have been here for the last three weeks. I developed an abscess on my rear, just what I needed! The doctor at the wound care clinic thinks it is just one of those things, not caused by pressure from sitting in the wheelchair all day. Not much of a difference, I still find myself laid up in bed.

   About a year ago I received a new wheelchair, state of the art, and a piece of garbage! It was a quantum heavy duty by Jazzy, tilt, all the bells and whistles. In the first three months I had it, four of the motors went up. I threw a royal hissy fit and the company took it back. I went with a new company, figured it would just be a matter of ordering a new one, right? Nope, I had to start the whole process over from scratch. Finally I got the new one, a Permobil M3000, so far so good, except I flipped it over going top speed on the sidewalk. That story is for another day.


Monday, July 11, 2016

Changes in living arrangement, time to stop driving

Ok, so what's new? We moved into a new house, a rancher that I can access everything. It's raised, so we have an outdoor elevator to gain entry, pretty cool! I just got a new wheelchair, very comfortable. I'm glad we didn't paint the new doors or the hallway yet, I have taken some pretty good size chunks out trying to get used to it! My soon to be 90 year old father in law lives with us, now that's a challenge! I spend a good chunk of my day reminding him where the bathroom is, and then explaining what you do in there!

I'm coming to the end of my driving, sad, but true. The weakness in my arms is the issue. I can't hold my right arm up at all, and I've begun to drop things with the left. It's so strange, I drop them and I'm not even aware it happened. I'll miss the driving, and the independence it brings, but a man has the know his limitations. I think George Washington said that, or maybe Dirty Harry, I often get those two confused?

Wednesday, June 29, 2016

Hey, I'm back!

Hey, what did I miss? Took a break for a while, thought I'd get back to it. Lots of changes on my end, I'll try to lay them out over the next few days. I hope everyone is well, I look forward to catching up!

Wednesday, August 20, 2014

Thinking Of Intrathecal Methotrexate, Screened In Porch

So I've been doing some reading about intrathecal methotrexate for the treatment of progressive forms of multiple sclerosis? Since I'm lucky enough to have joined the progressive club I probably should look into it, don't you think? I already tried mitoxantrone, so another trip to the oncology center is no big deal, gets me out of the house! They need to change the description of how it's administered, lumbar puncture, sounds so gruesome! Maybe call it lumbar introduction, hello lumbar! Sounds like something you'd read on an autopsy, victim suffered from a lumbar puncture. Stay tuned, I may be starting a new adventure?

I think I want a small screened in porch off of my bedroom, not to entertain, just to go sit? A place to escape to where I can feel the breeze, but not have to deal with the bugs. Nothing fancy or big, just a place to sit and plan my overthrow of the world. Room for 2 chairs and a table, figured I'd let the wife come out with me too. Oh, I am so planning an overthrow!

Tuesday, August 19, 2014

Wheelchair Accessible, Steps Are A Problem

We took the wheelchair out to dinner, or did it take me? Funny how you notice things when your perspective changes, and your altitude. One of the thousands of local eateries, the bar we met in, is a great place, if you are walking through it. In the chair there wasn't enough room to get past the tables and booths to get to the bathroom! I guess it was wheelchair accessible, as long as you didn't have to use the facilities?

Have to figure out how to navigate the 4 steps to the bedroom level of the house? They have wheelchair platform lifts, but how do you go about getting them? They made me take medicare, I suppose I go through them? Never imagined those 4 dinky little steps could cause such a problem? I suppose I could just live my life upstairs, but I'm not ready for that yet. We will figure it out, we always do.

Friday, August 15, 2014

32 Years With The Wife, Lucky Man Even With That MS Thing

Met the wife 32 years ago today, locked her up for solicitation! I kid, it's one of the things she likes about me!?!? We were introduced by a friend and things have never been the same again, in the best possible way. Everything I have, everything I am comes directly from her. Baby, you're the greatest!

What a wild ride the last 32 years have been!  I was having issues then, wouldn't be diagnosed for 5 more years. I was on top of the world, nothing I couldn't do, and she was there to see all of it, the semi pro football, softball, it was great! Unfortunately she's been there to see me when I wasn't riding so high, falling, not making the bathroom, the steady decline of my body. She has been the one constant, along with the family, that I knew was never going to change, would always be within my grasp. In a couple months we will be married 30 years, best choice I ever made, so happy she said yes to the dress!

Thursday, August 7, 2014

Snakes On A Ramp, Better Living Through Chemistry

So I saw yesterday my friend Kim had a snake on her ramp. What are the chances the wife would come home and find one on ours? She called me from the driveway asking what she should do? I told to use the front door, good advice, right? I should have asked the brother to build a snake proof ramp! Thanks to Kim for sending her snake mojo to Baltimore!

The pain doc gave me a medicine refill over the phone yesterday, thought that was awfully nice. He knows the month supply of 90 Oxycodon usually lasts 3 or 4 months, so he was comfortable doing it. Got the script filled and it was for 240 pills! I think they are going overboard with this whole "lets keep you comfortable" gig? Not complaining I guess, just tired of depending on pharmaceuticals to feel quasi normal.