The Bathroom Will Be The Death of Me

      What is the best way to get in and out of the shower? How about on and off of the toilet? I cannot believe I need to ask it, but here we are. I honestly don't know the answers anymore, PT and OT have been to the house, no answers from them. Shower seat and toilet seat are both about 6" lower than my ride, doesn't sound like much, Everest to me. Anything? Any tricks I haven't thought of? Actually considering a stoma to take care of the bathroom part, already have the suprapubic catheter for part of it, why not the boxed set. Am I to be destined to sponge baths for eternity, live the rest of my life in seclusion? 

    PT and OT don't seem to understand hemiplegia? They tell me, grab here, push this foot, scoot over, they don't realize my scooting days have passed me by. I can't be the only person they see with these issues? I'm being told Medicare won't pay for an overhead lift system, a Hoyer lift won't get the job done, not without major restorations to our home. Just got a quote for the overhead system, $20,000, say what? That's not going to happen, retired since 1996, not a lot of disposable income at our casa currently. If you see me out I'll be the guy in the corner looking miserable and smelling badly, wait, I forgot, I don't go out anymore. 

Spasticity and Sleep

     I’m having an issue with sleep. Since I started with the catheter I have been enjoying 5-6 hours of sleep a night, straight through. Before I was getting up 3-4 times a night to go to the bathroom, I was only able to empty my bladder 1/4 of the way. The issue is that getting up 3-4 times a night makes it easier to go back to sleep, it all has to do with spasticity. An hour or 2 at a time still causes the spastic tremors when I move, but they would subside. Moving after 5-6 hours being in the same position is another story. These tremors are borderline seizures, my whole body goes stiff and shakes violently. It continues for a good long while. Understandably I can’t get back to sleep. I guess I should be happy I am getting any sleep at all

Bioness Not A Fan Of Paperwork, It Was The Bathroom That Killed The Beast

Had a surprise when I ordered my new gel pads for my Bioness L300 foot drop system. The company has apparently been taken over by gangsters, employing strong arm and intimidation techniques to conduct business?  Knuckles, the representative I spoke to, informed me the cost per set was $11, if, if a paid for them outright. If, if I submitted a claim for Medicare and the claim was denied the cost would be $33 a set! Wow, did I just experience a shake down or what? The paperwork must be a real bitch if they are adding over $200 to my order to do it? I have to be fair, they only add the "fee", the "vig", the "juice" to my order because they informed me that Medicare would "most likely" deny my claim, so they really were just trying to save me the anguish of a denial. Bad form Bioness, bad form!

Pain management doctor has me on a long acting dose of Oxycontin, taken twice a day, here's my issue with that. Dose is so low I'm not sure I'm feeling any better? The pain is still there, and so are some new issues, the biggest of which are urinary urgency. My problem is the Oxy was started at the end of my IVIG therapy, not sure which one if either is causing it? Not much on coincidences, even with my new health reality, since I can't take back the IVIG, I've decided to stop the Oxy and see if that changes anything? I'm laughing as I type this, how in the hell did I end up here? My contemporaries are trying to figure out what island to visit next, I get to decide if i want to wear Attends or Depends?

Weight Loss, Exploding Gallbladder, Social Security, Medicare, The Mother In Law, Bioness, Bladder, Wake Apnea, And A Dog

okay, so what's been going on?  I lost almost 90 pounds, have kept it off, as a result of the weight loss my gallbladder exploded New Year's Eve, so I had surgery for that. My health care provider has stopped paying my claims as primary because I'm supposed to be on Medicare. Medicare starts July 1, but I have to pay a $140 a month penalty because I didn't sign up when I was eligible, nice. Just got a letter from Social Security saying that as a result of a random computer audit it was discovered that I was being paid too much so my monthly amount has been adjusted by almost $900. The mother-in-law went into the hospital to have some tests run and they made an error in her medication that put her in a coma that lasted for the better part of month. She is in a rehab facility fighting to get to a point to be able to take care of herself again. So other than that Mrs. Lincoln how did you enjoy the play?

My Bioness leg stimulator has been replaced through the extended warranty that was bought for $500. The straps that hold tight to my leg are the last thing I'm waiting for, seems they are on backorder. Curious what else the straps are used for that they don't have them in stock at all times, and are they going to replace the contact pads that are being ruined because they are out of stock? The body is pretty much shot, not too many things working the way they should, if working at all. A lot of the places that have been numb for years suddenly are extremely painful. Bladder issues seem to be the order of the day, when the urge hits you'd better get out of my way! I've developed this little thing that the neurologist calls wake apnea, a rather bothersome new edition to my old repertoire. Other than that it has been business as usual, the wife still hasn't tossed me out of the house, the kids still hate me, but we did get a dog, Rosie is a great addition to the family.

The Boys Hand and Wisdom Teeth, and MS and Incontinence

We call tomorrow to see when to take the boy about his hand, he gets all 4 wisdom teeth cut out next Monday, the boy will be dumb as shit! But seriously folks, he's keeping us busy. He's worried about the cost of his wisdom teeth, I told him to stay awake, be cheaper. I actually was awake for mine, quite possibly the worst thing I've ever experienced, told him we'd splurge, put him out for 2.

Like I said, I've been feeling pretty good, having some bladder problems. Always have urgency, no longer think, hey, I'm going to have to go to the bathroom soon, it's more like out of the way! Suddenly it's more like I'm North America, in-continent. I could do this all day. Not digging it very much, suddenly realizing I've wet myself. This whole MS is just one fun thing after another. Time to check out panty liners and other things, but not happy about it.

Schilling Family Book Signing, and MS Medication Dance

Went to my first book signing tonight, my cousin and her husband wrote a book about the journey their family is going through having a child with Asperger's Syndrome, The Best Kind of Different: Our Family's Journey with Asperger's Syndrome
Shonda Schilling, Curt Schilling. It was great to see them, the aunt and uncle, the whole gang, even a local cousin. Everyone was in line, taking pictures, asking them to sign the book, pretty cool. I couldn't resist, I asked the cousins husband to sign a crossword puzzle book, he threw the pen at me. Can you say lawsuit? Always good to see family, wish her brother had been there, would have made it perfect.

The neuro said yes to the oral Prednisone, no to the DDAVP, both things are the reason I've been with him since 1986. He will tell me his honest assessment of the situation, or more importantly, tell me if he doesn't know, I like that. Anne, you were right, going to stop the taper at 10 mg a day, 5 in the am, 5 in the early pm, just like you thought. He also thought the DDAVP was a bit much, wants me to see a urologist about that part. Trying my best to take it slow, but still live the life, baby steps, literally.

Biker Insurance, Running To the Bathroom, and I Need a Hobby

I see, hear, and read things that make me chuckle, especially in advertising. I was listening to the radio today, there was one of those non stop auto insurance commercials. This one was for motorcycle insurance, or as they referred to it bike insurance. The company was advertising bike insurance, for bikers, by bikers. I got a picture of these suits, sitting in a conference room, knuckle bumping eat other. I also had a minor guffaw, wondering what real bikers think of the massive infusion of menopausal men using bikes to stay young?

Tell ya something else that makes me laugh. The image of me, running, or my new equivalent of running, trying to make it to the bathroom. I look like those guys that do demolition by running into things, or Quasimodo,going to ring the bells. I am capable of leaving a wide swath of destruction to begin with, put me in double time mode, and look out! I had one of those dashes today, figure I may as well laugh about it. Think I had a micro chip installed at birth, and it activates when I pull onto my street, good times.

Have to figure out how to get out of this recliner? Weighs heavy on my mind that my future holds nothing but sitting, probably, and the fatigue is so bad, I can't go do anything about it, but sit here and wait. Time to suck it up, push it, but what? Where? When, and with who? What do people do during the day, or at night for that matter, when they have a lot of time on their hands? All my friends and family work, they can't play with me. Never thought you could have too much time on your hands, is there no parole from this?

Chained To a Police Station Pole, Maryland Terps Basketball, and Bathroom Issues

Reconnected with a friend from high school, hadn't seen him since right after we graduated, 30 years. We did typical things, chased girls, did things our parents didn't want us to do, played football, and got arrested. Now when I say got arrested, I'm not talking about pictures in the post office, just dumb kid stuff, the kinds of thing you get chained to the pole in Fullerton station until your parents come and sign for you. That's kind of why we hadn't seen each other for 30 years!

So my friend wants to know if I'd like to go watch a Maryland Terps basketball game with him? My first reaction is way cool, I'm in! The I remembered, I have MS, just slipped my mind. Here's the problem. I'm in a state of limbo. With a cane I can walk slowly into your house, no prob. If I have a sudden bathroom run, I'm probably close enough to make it. Getting into the field house, long walk, and getting to the bathroom, a public mens room, where the guys have been drinking, don't know if I could, or would want to! We will probably watch the game at home.

Not sure what bothers me more, the fact that I have the issues I do today, or the fact that I'm so comfortable talking about them? My life away from home is structured around who has the cleanest bathrooms, how far they are from the parking area, all that good stuff. Maybe I'll right a book, public outhouses for a traveling guy with bathroom issues. I need to work on the title.

Friend to Finish Bathroom, Wife Walked on Back, and Daughter Gets Published

Took a road trip with a friend today, even crossed state lines. I know, slow down boy! My friend's a builder, we went up so he could look at a problem with a sidewalk at a place he just finished a huge addition. So I road shotgun, we looked at the crack, then went and got lunch, I miss going to work! The friend is coming tomorrow to finish our hall bathroom, the one that was started July 19th, 2008, so much for the whole thing taking a few days. I hate it when people don't do what they say. My friend is coming tomorrow, to finish, and we bartered the job for a 30 gallon compressor, he tried to pay for the new door, so obviously the job is worth more than the compressor, but I feel like I'm paying him something.

The wife did a modified oil treatment tonight, hoping it will help with my fractured vertebrate. So far so good, let's see if it works. I am fine if I don't move, but that's no way to live, so I will go back to toughin it out, as soon as I get back to a level I can tough through! My father has always had back problems, so I'm glad he passed THAT on.

The daughter got some good news yesterday, she had her first novel published. She must have gotten her writing talent from me, but she didn't have to take it all! The novel is called "Her Hair" and it will be available on places like Amazon in a few days. Most of the things she wrote when she was younger had a definitely Disney style, you know, the father died! They would be cheery stories, and all of a sudden they would talk about the day the father got murder by the band of roving thieves. I didn't sleep with both eyes shut for 10 years! I'm proud of her, not just because I want her to buy me a 700 acre piece of property in Western Maryland, but because I love her and think she can do anything!

Vitamin D and Multiple Sclerosis

Well, I finally started a new therapy today. I took the greenest gel cap I've ever seen. I can almost feel the vitamin D rushing through my veins. Vitamin D isn't calcium, is it? How long will it take for my D to go up? Does your D automatically go up when you take such a mega does? Has anyone ever had a D range that was too high, and if so, what in the hell does that do to you? Here's one for ya, do cows ever have a problem with vitamin D?

A friend of mine came by to take a look at my bathroom project, he's one of those guys you hate who can do anything. He told me that an hour should finish the whole deal, minus a couple pieces of trim. Makes me more than a little mad that it's only an hour of small jobs left between me and my turbo toilet! I tried not to bother the guys I worked with, but like so many times in my life, when it was important, they were there. Thanks guys! So barring some unforeseen problem in Dover on Sunday, my friend will be here to caulk, put on knobs, turn on the water, and make me laugh at the stories of what he saw at the race on Sunday.

The boy broke his finger in gym class yesterday, that puts a damper on badminton and bowling. I told him something like that wouldn't have happened to me when I was in school, mainly because I usually laid on top of the lockers and smoked during gym class. I can't figure out why the wife gets made when I tell the kids those kinds of stories, what does she think they are going to be shocked? The division badminton games start tomorrow, and the competitive bowling leagues start on Saturday. I wish I could make it better, but sorry Pal, unfortunately this is the way it goes sometimes.

Swank Day 4, Multiple Sclerosis, And Bathroom Update.

291 on the old scalearooney this morning. At this rate I should be down to fighting weight by next Thursday! Had a bowl of cereal and a banana for breakfast, a bowl of black beans and rice with a half a chicken breast cut up in it and a couple of pieces of fried polenta for lunch. Dinner will be something good, maybe some shrimp or fish, with maybe a salad? Copious amounts of water are being consumed also, although not yet up to 32 oz 5 times a day yet!

Anytime I have ever stopped anything they say is bad for me, I pay the price in my legs. When I stopped caffeine and nicotine, it took me weeks to get my legs under me again, or as much as I ever have them anymore. Evidently fat intake effects me the same way. My legs aren't worth much, other than to look at! I'm hoping that's a good sign, because I am going to be truly pissed if stopping all these things doesn't do anything good for me! Snacking is still my biggest problem. The Raven's game won't be the same without chips and dip, nachos, and m&m peanut butter, but I shall muddle through.

We worked on the bathroom for a bit today. We were able to get the molding back on around the window, and caulk down one side of the shower enclosure. So much for being told we would finish everything today. At this rate we may be finished by Thanksgiving, but Christmas is just around the corner. That's it, I want the bathroom finished for Christmas, done and done! That's a load off, now I can hope I get an early present. I am thankful, really I am, I just don't like having to beg to get family to do things for me.

Bathroom Update

Nothing new to report. We still have our turbo toilet sitting in our living room. We aren't able to use the hall bathroom at all. Can you say fed up? I have a new strategy, we shall see if it works out. I will never again ask for help from certain people. If I can't afford to pay someone to come here to work, the work will not get done. The gang that did my shed aren't included in this, they would do anything, anytime. Just know, the door swings both ways, don't call here for help, for anything! We started July 19th, we have worked 2 full days if you combine all the visits. Saturday is the target, I'm not holding my breath!

A Better Idiot Proof Garden System

These guys have idiot gardening down to a science! I am going to explore the watering system after, and if I ever get my bathroom finished! Read that garden site, I like it when people admit they don't know what things are called, or why they work. It's interesting. We are off to farmers markets tomorrow, yippy!

Oh yeah, one convention down, one to go. I could have put each one on for the cost of a camera and an Internet connection! The money that was wasted distresses me beyond words. I'm sure the other team's pep rally will be as opulent as this one was. It would have showed real balls for one of the teams to have had their convention online and sent every registered voter a $5 gas coupon they could print out and use. Guys, you missed your chance to shine!

Turbo Toilet Update, Bathroom Renovation Part 3

It's day 294 of our bathroom renovation. A lesser man would have given up by now. All of the drywall is up, the first coat of "mud" is on it. "Mud" is what we seasoned drywall dudes call joint compound, Spackle, and whatever other words we can come up with. The shower works, no leaks, no drips, no errors. We were able to save the floor, so we will retain a little of that retro 1970's look with the new parts we added. Another coat of "mud" and we will be able to paint. Ah, painting, one of my great joys in life! I actually did like to paint at one point in time, but that horse has flown the coop. I never did like painting small spaces, not worth getting the brushes wet.

The other reason is linked to the reason we put in a handicapped accessible bathroom in the first place. I make a real mess now when I paint, something I never did. My right hand doesn't have the strength or dexterity to do it, and my left is still learning to be my primary. Painting isn't like shooting a gun, it takes practice to change hands. The problem is I have developed an arthritis clicky finger on my left hand. I need to start eating gin soaked white raisins before it is too late, but I digress.

Hershey Park killed me, but I knew it would. The drive was painful, only 1 1/2 hours, but long enough. Just enough walking to make the brace scream and remind me it's there. I was thinking I would soak in a hot tub, but we don't have a tub anymore! I can't wait until it's done, I'm tired of sharing my bathroom with the whole world! I want them out! I figure a few more months to go at the rate we are progressing! That's a long time to wait to hear the thunderous blast of a turbo toilet!

Bathroom Update

The bathroom is coming along, slow but sure. A couple of trim pieces, and then the drywall goes back on, or should I say low moisture, no mold green board? Drilled the holes for the water turny on thingies, the scariest part. In a couple of days I will be painting, then it's turbo toilet time!
No more stepping into the tub for me! The seat will come in handy. I shall return.

New Bathrom Project, Cross Your Fingers

Are your fingers crossed? Here is to hoping all goes smoothly. We tore out the old tub, tore down the old drywall, and tore up the old toilet. We just tore through everything! All of the wood was solid, but after 35 years the tiled tub was shot! We opted to get rid of the tub altogether so it was more user friendly for me. The brace I wear does wonders for me walking, but it's useless getting into a tub.

Do you know anyone looking for a rose colored toilet and cast iron tub? Let me tell you, the old tubs weigh a ton! I hate to throw it away, so I'm going to run an ad on the local "free-cycle" page. I've never done it before, not even sure if I can, but I am going to try. Free-cycle, for those of you who don't know, is like a big flea market, but everything is free. You see a piano, it's free. Want to get rid of your roller skates, take them, they're free. Pretty cool idea.

Tomorrow the drain gets set in the base of the shower. After that, walls. It took some time to get the base in position and level. Turns out either the house has settled a bit, or they hurried to get the bathroom finished when it was new. Either way it's done.

We bought a Jacuzzi low flow high performance toilet! I can't wait to see what that is all about. For anyone who had the opportunity to use the old rose colored one, you will remember you had a 50-50 chance of it flushing. This new turbo toilet must flush so hard it will pull the birds off of the wallpaper! High performance toilets, what's next, turbo toilet paper!

I will update the bathroom as the work gets done. We got everything but the drywall, and that's even a new fangled design. Green board, or some other fancy name. Why in the old days, they didn't need green board to do bathrooms. Regular dry wall was just fine! Maybe that's why the old stuff just crumbled away when we took it off?