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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. 

Wednesday, August 6, 2014

Proud Owner Of A New Ramp, My Back Is At It Again


We finally broke down and added a ramp to the side porch, I'm spending more time in the wheelchair, figured it was time to get it in the house? The brother came and built the ramp, enlarged the patio at the end to give me plenty of maneuvering space as well. A friend from high school came and did the railing with his wife, thanks to them. Imagine my surprise when I wheeled up and the chair didn't fit through the door! Luckily another friend had a chair for sale that did, thanks to him. Last obstacle are the 4 steps up to the bedrooms and baths, sure we will be able to tackle that one too. Thanks to everyone that helped, George Bailey has nothing on me!

The time I spent down waiting for back surgery all but finished my legs, not much get up and go left in them. Think of how ticked off I was a couple of days ago when I got in the shower, turned to close the curtain and found myself laying on the floor! This last surgery lasted about 3 months or so, same problem is back with a vengeance. Now we have to decide what to do? I can manage the pain I'm tempted to do nothing, surrender to the chair full time, it's coming anyway. At what time are you excepting the inevitable or giving up?

Friday, May 23, 2014

Twilight Zone Dentist, Friends That Offer To Help


I love the world, always something to see, never gets old. Went to the oral surgeon yesterday, 8am on a chilly Baltimore morning. Sitting there with the wife, in she walked! I want you to try and picture this with me, I saw it and still can't believe it. 2 or 3 of us surgical candidates in the waiting room when in she walked. High heel shoes, lime green leggins, a purple bowler hat, and her top measurement had to go 48 GGGGG! Normally I don't discuss these things in this forum, but this time I felt compelled to share.  Oh, did I mention she had string bikini top on? The wife wouldn't let me ask her if I could take a selfie with her, so I took a snap of her license plate, FETTISH1. Man I love this town!

Had a friend and his wife come by today to replace the crank mechanism on two of our windows. I went to school with both of them, nice to have contact with old friends, 34 years since we got out of school, hard to believe. He wants me to make a list of all the little jobs, and not so little ones too, get them taken care of all at once. My strong suit isn't asking for help, that's why it's so nice when it's offered.

Wednesday, May 14, 2014

Dental Destruction, Therapist Must Be Crazy

I was anemic when I was a baby, the mother didn't know she was supposed to give me the iron through a straw, she gave it to me on a spoon, or so the story goes. As a result I have horrible teeth! When I had the amalgam fillings removed in the early 90's they numbered 26! I am meticulous with my oral hygiene, didn't seem to matter? I have a few, OK a bunch of crowns, always something going on. Had a loose crown, figured I'd go in, have it cemented back on? Won't need to do that, running my tongue over it today the whole tooth feel out!  Appointment next Thursday with an oral surgeon to have the rest of the tooth removed.

P/T girl comes today, got a new one, she comes when she says she's coming, and seems to have a plan. Met with the O/T gal finally, had to get that precious authorization. The lack of a plan is what I have always disliked about therapy, it always felt like they were making it up as we went along. She has go to exercises, keeps me on task. I will see about O/T, have my doubts to be honest, some radical ideas like doing laundry and cooking and assorted choirs!

Saturday, May 10, 2014

Maryland Grow 100 Challenge, Back On Paleo

The kids are coming over for mothers day, the wife said she wanted her gift to be help cleaning up the yard. My plan is to cornswaggle them into helping with the garden. I am entering Maryland's Grow 100 Challenge, don't see how I can lose? If I combine my raised bed, my bag garden (bags are now gone), and my idiot garden, mathematically I can't go wrong. Now to pick my crops! I'd share what I'm doing, but I don't want anyone moving to MD to steal my sure thing.

We are back on the paleo diet, no more excuses! I figure if I'm going to hang around, I may as well look good doing it? I dropped 90 lbs the last time we committed to it, gained 30 of it back, rough year with my surgery, the mother in law's illness and passing. When I do something, I go all in, including eating badly! I'm not a have 3 Oreo's double stuff cookies and leave the box alone, more a, "hey, who ate all the Oreo's?" So, I'm 14 lbs down in a few days, back down to a svelte 270. Was going to post pictures to chronicle my journey, but decided nobody deserved to have to see that!

Friday, May 9, 2014

Wheelchair Van A Go, Time To Paint The Living Room

So this is my new toy, ain't she cute? She's an 1980 Chevy, about 80,000 miles, purrs like a kitten! The lift device is pretty cool, have to admit, until recently hadn't paid much attention to them. It's a 3 button system on the back. First button opens the doors, second the platform comes out, third button lowers the platform, boom! It started right up with a hot shot, needs a new fuel pump, we'll probably put new tires, hoses and belts on, should be ready to go!

Getting ready to paint, everything needs it! My problem is I don't know what colors to pick? The only thing I know for sure is that
I want some color, no more white, off white, cream or beige. Aren't there books, or magazines, or webpages that show you what color combinations look like together? I want something warm and cozy that people will feel comfortable when they come by, but not so much that they stay too long. Do they make a go home green? 

Sunday, May 4, 2014

Free Van For The Wheelchair, Skating Show Madness

Have a guy giving us a 1987 Chevy van fully wheelchair accessible, nice to know nice people. I met this guy a few times, he came to the Sheriff's office after I retired. My grandmother used to say never kick a horse turd, you may be related to it, and yes, she was a female Will Rogers! Anyway, I'm not related to this guy, but he remembers me from when I was a little boy, his wife grew up in a house that was down a long dirt road and sat right behind my grandmother's and my house. Nice to get a freebie while you're figuring out what works, just hope he doesn't tell too many stories about what a crybaby I was!

Big weekend at the Brawn household, and yes, that's my last name, a 6'5", 275 lb man that used to be a powerhouse named Brawn. The wife and daughter have the final day of the skating show they are involved with, the daughter is the teacher, the wife is her assistant. Interesting dynamic, the wife was the teacher for 25 years, she's having an issue playing second fiddle and it's hysterical to watch! She tells the daughter what SHE would do then the daughter does what she wants. 180 kids in the program, 4 shows, watching the wife get a smack down from the daughter, priceless!

Saturday, May 3, 2014

Wordy Father In Law, To Therapy Or Not To Therapy?

Having an interesting issue with the father in law involving his word choices. The family has him under a microscope since the mother in law passed, poor guy. Trying to show them this has very little to do with his advancing age, 87, he's always been this way! Example, he referred one time to an electronic, colored, traffic control device, a traffic light to most. He also was an engineer, that means he over thinks, over asks, and over plans. Told him once I was going to get a new toilet in the hall bathroom. He said, the hall bathroom, which one do you mean when you say the hall bathroom? I said Mr Jack, we have 3 bathrooms, one in the bedroom, one in the hall upstairs, and one in the basement. If you were to take a wild guess, which one do you think I mean? Doesn't matter to me one way or the other, we get along great, but they have him questioning himself now.

Not having a great experience with physical therapy here at home. Two main issues, my body went into full revolt with the simple exercises and she has canceled 75% of the time. I've decided to push through with the therapy, I'm in really bad shape, how much worse can it get, right? The other problem is how do I get the therapist to keep the appointment, or show up on time? The occupational therapist was due her at 4 today, said she would call when she was on her way. I took a shower at noon, yep, that's when she came, and didn't ring the bell. I'll fix scheduling issues when  I take over the world.

Monday, April 28, 2014

Exacerbation Madness

The secret word for today is exacerbation, a big time one! Everything that is effected, or is affected, should have gone to class more, is on high alert. No sense calling the neuro, nothing for them to do since I've entered the "we'll make you comfortable" stage. Sitting in the recliner waiting to see what this current body coup takes from me, horrible feeling, knowing that when it's over you won't be the same. I'd have to say the toughest part of this saga has been watching my body die in little bites?


This has been a fear of mine since I was a small child, being a person not in control, one that just sits and shakes. Don't know where it comes from, don't remember knowing anyone like that growing up? I had all the normal fears too, vampires, the volcano in our back yard, the knowledge of my families lack of a defibrillator, but this one was right up at the top. I watched my 14 year old uncle die from cancer two doors up when I was 6, but I'm sure that's not got nothing to do with it? I thought you only had to be careful for what you wished for?