Uhthoffs can suck it...

I don't do well in heat/humidity.

In addition to feeling my energy drain away like an ice cube in the sun, the pain/sensations are a lot to deal with.

We are under tornado watch right now. I actually am welcoming it because it is bringing cooler air along with its threat. Ahhh. It has been hot, sunny, muggy. 10 minutes in the sun guarantees me a migraine.

I had an appointment last month, which I cancelled (again). I keep canceling/rescheduling. I am uninterested in talking about more chemotherapy. I am not gonna take tegretol. I am not going to take ampyra. Not much else to discuss. No new attacks. No improvements. Just, as per temperature changes, headaches, heightened fatigue, new born foal legs made of lead, numb, cement block feet. Etc, mostly etc.

Despite this shit, I am very excited to get the boat out on the lake. Rommel just got his new life preserver in the mail...which happens to be MS orange. (they didn't have green in stock, only orange). Which, I am sure, the orange will be good for visibility in the water. You won't miss him...a huge, wolf looking shepherd floating around in an orange dog life vest. How cute is that shit, eh?!

I am looking forward to swimming. I can't walk for shit, but I can swim good. I fatigue very easily, but the cool lake water seems to keep me peppy enough. I am not gonna question it. I love swimming.....it's the leg cramps I worry about. But, I do it safely. Take plenty of precautions.

hey pretty

Post hurricane Irene....man

so, a cripple walks into a bar and the bartender says....

no punchline.... guess it isn't a joke.  but, being a cripple....ill make fun of it all i want.

i got a couple worthless, million dollar questions recently.

1.  what would I say to someone who doesn't have legs?  my instant answer was, "they (legs) ain't all they're cracked up to be."
only cos mine don't work for shit, i suppose.  but, there are benefits to having these numb, spastic, painful, dead things attached to me.  but, all in all. that was my answer, and i am sticking with it.

***and while i do have these 'why the fuck would someone ask me that' moments......what the hell.

2.  would i keep my life the way it was/is (i.e. be mobile ALL my life, then BOOM...have my mobility taken from me. Or, would i rather be crippled right outta the gate?

um.....jesus.  i am still throwing that one around.  it isn't by any standard a thought consumer....but, i have spent a little time on it.

pros and cons to both.  both ultimately suck the bag.  both piss me off.  the 'would you rather' game is supposed to be funny/gross.....not rub your nose in your own crippled shit.

actually, before this becomes an MS cesspool....I have to admit, being crippled hasn't been at the top of my list as of late.  with the weather shift in Vermont... (cold, hot, cold, warm, freezing, sweaty, hot, cold, warm, etc) my body has been doing its typical painful adjustments to temperature changes.

the pain i have had over the last month have been...pretty epic.  tiny electrical explosions.  stabbing.  burning.  tooth-aching, throbbing, gross pain.  my left foots instep that never meets the floor...causes a wave of nausea when pressed (like accidentally stepping on one of Rommels toys/bones).  pinpoint, bursting pain in my head that leave a blood taste in my mouth. yummy.  waves of 'ow'.  The MS hug....loving the shit out of me....

shit.  so, no....the cripple bit hasn't been up front for me as of late.  I like bitching less about it. ;) (or, do i?)

one MSer had one mentioned the amount of bitching people (including me) with MS do.  and, trust me, they do/did bitch, and bitch.....  and i am like, wtf?  you have MS, I have MS, all the MSers blogs bitching about MS?! DUH!  why the fuck wouldn't they.  cripes.  get it out. vent it out.  its a friggin blog.  and, its yours/theirs/mine.  

but, hey. whatever gets ya through the day, right?  i am admittedly pretty intolerant of people....so, if someone cant tolerate me..... seriously, dude, no biggie.

I am in it for the parking....

I saw that on a tshirt, and laughed my ass off. It's right up my alley...a darker humor. However, I know some people that have handicapped plaquards, and really do not NEED them. I use a wheelchair, and since I am Rollin, G. 95%of the time doesn't park in a handicap spot...I don't think I need it, not really. And I always consider the fact that there is someone much worse off than I, and I do not want to take up one of the few spots left. That is just how I am. Well, last week, G and I went shopping, yet I decided I didn't want to go in. Just wasn't feeling it. So, he parked about 3 spots away from the handicapped spots. Basically, I had a birds eye view of the vehicles occupying the handicapped spots. Since I didn't feel like reading my book, I decided to people watch. I started trying to pick out which vehicle belonged to the people exiting the store. In about 10 minutes in the bed, bath and beyond parking lot, I had matched the correct vehicle to one person. A cute, petite chick with a HUGE shopping bag that got into a focus. Yay me...the next miss Cleo? HAR. Well, I see this chick, fucking sprinting from the store (it had started to rain), she is hauling ass with her bag in her hand, and holding her purse above her head so her hair won't get wet. I am quickly trying to pick which car is hers, and before I can, she is getting into one of the vehicles in the handicapped spots. Seriously? Fucking seriously?

Pain. And another painting

Crushing hug
At times, short of breath.
This goddamned hip is feels like its ready to pop out of its socket.
I might need hip surgery ... In my thirties. Due to steroids.

Pocket pisser

This is the name G. And I have given to the travel John portable pocket urinal. This thing is amazing. It has been beneficial for my MS incontinence. I can leave the house with a sense of security, knowing that I got the pant pissing thing under control. I don't know about your MS, but mine has given me urinary urgency. Combine that urgency with the inability to walk unassisted, and you got yourself some wet jeans, man. Prior to finding the travel John portable urinals, when we left the house, I was obsessive about my impending urge to have to go. That is also crippling....seriously. Poor g., desperately trying to find a discreet pull off...then, having to hustle to try to hep me get to the spot. Sucks. But now, I am ecstatic as hell. I feel some control. And, to boot, now that I don't have any anxiety about having to piss, I can enjoy the ride. My main issue with urination during travel isn't finding a bathroom in a rest area, or gas station. They seem to be everywhere. My problem is that my spasticity is really bad, and I need assistance. After sitting in a car for an hour or more, I get extremely stiff. I don't move fast to begin with, but right outta the car after an hour of sitting, I move like a rusty tin man. So, using a gas station bathroom isn't an option because I cannot hold it. When I gotta go, I gotta go. So, if you have any urgency issues, or, if you just want to piss in your car with no odor, no mess, then get some pocket pissers (travel johns). I think you can find them at hunting type stores if you live near a gander mountains, but I got mine online. When we went on our 2 week US tour, I took them with me, and used when necessary. Like ABSOLUTLY necessary....I used reast areas, and gas station bathroom the majority of the time. But I had them handy for when I knew I wouldn't be able to make it. So, there it is....

Super moon

the moon was wicked pretty last night.  14%  bigger than how we are accustomed to seeing it.  I wanted to take some pics, and my tripod was upstairs.  I didnt have the leg energy to go get it and schlepp it back down and outside.  I could have asked G., but I didnt.  He has enough shit to contend with..

So, I went out, in all of my glorious spasticity, and tried taking a couple pics.  Bouncy, bouncy, bouncy.  

The pics were all crap, beyond blurred.  The F stop is manually set, aperture open longer...need a steady hand. so, I got pissed, and went to bed.  G. could tell i was pissy, and asked me if i wanted him to either take the pic for me, or if i wanted him to go stand oout back, as a human anchor, so that I could lean on him.  I said no,grumbling.  After about 15 minutes, he drifted off.  Seriously, this guy could sleep hanging from a meat hook.  I was determined to get a pic that wasnt blurry.  So, Rommel and i headed back outside.  I sat my ass down, braced myself by leaning heavily into the porch, and I finally got one.  yay.  small victories make me all happy. 

here are a couple shots of this big, beautiful bastard.