Archive for the 'Day-to-Day' Category

On Saturday (3/22/08) the left side of my face went kaput. No smiling, no facial control. Blinking is in slo-mo and the eyelid doesn’t reach all the way down. This might not sound that big but if you don’t blink your eye will water. Now try that one on for size and see what it does to your already off-balanced brain. Also eye movement isn’t coordinated. Picture synchronized swimmers with one being a couple beats behind.

I got tired of dribbling fluid down my chest so started in with straws. Morning coffee should not be drunk via a straw. It’s wrong. If you don’t understand why its wrong you aren’t a coffee drinker.

Woke up this morning (Monday) and found I could smile a tad on the left side. Whoop baby! Happiness is being able to grin, and not that lopsided shit.

So I called and left a message for the fabulous neurologist. There isn’t much that can be done and since I’m already improving I’m not going to be jumping on the steriod wagon. But, as far as new symptoms go this sucks.

During all this powerchair pre-auth stuff I was told about a Case Manager (Care Coordinator). Someone at the insurance that handles all your claims. Supposedly this simplifies authorizations for things since any requests/claims are sent directly to this one person instead of the general pool.

Called Regence, my insurance, to ask how to get one. After bouncing from person to person and being on hold I was told I could get one if they deny my request for a powerchair. No, I can appeal their denial. Then I can request one. No, then one may be assigned but its unlikely.

Total cluster. Every time the Regence rep said then I could request one she’d contradict herself and say I couldn’t. And I’m the one with the neurological disorder.

Stop playing with my head!

Lately I’ve been using the scooters at the stores. All I can say is its the only way to shop! They’re a little difficult to use since they’re so big but all in all I can shop without needing a 12 hour nap afterwards. Browsing isn’t easy, scooters are very close to the ground, and other shoppers tend to freak when they see a scooter. On the upside the other shoppers freaking means they get out of my way and let me go ahead of them.

Weirdness at Costco. In the scooter, waiting for Marc to check out, the lady in front of us was wearing a gorgeous knitted sweater jacket with a hood. I compliment her on it, tell her I’ve been looking for one like it. We talk about it and then she smiles and says she’d give it to me if I’d accept it. Uhm, it’s see-your-breath weather and you want to give me your source of warmth. Off your back. Thank you but that’s a little too nice for me. Rich lady, real sweet. Made me want to tear up because there are people like that.

Thought for the day: Smile, you never know whose watching.

August 31st - MRI
Yay, I love MRI’s. Sarcasm off. They aren’t bad, I’m not clausterphobic or anything like that. What I dislike is the contrast. As long as its injected slowly I’m fine. Too fast and I hurl. I warned the lady and she ignored me. So there I was frantically smashing the ball to get the freak out of the tube before I aspirated some stomach contents. Why is it that the medical peoples don’t like to listen? 2 out of 4 MRI’s with contrast have resulted in me displaying the contents of my digestive tract.

Sept 4 - Neuro and Physiatrist
New physiatrist, he is awesome! A little old school but I really liked him. He made some suggestions which on the surface make sense but aren’t exactly feasible. What I like about him is that he tries things out before recommending them and he’s not script happy. Old physiatrist was all about writing the scripts and getting you out the door as fast as possible.

Neuro went over the latest MRI’s. Found one new lesion, not surprising, but also discovered that my spinal cord looks a bit better! YAY!

Sept 10 - Physical Therapy
My PT lady is also really cool. She’s relaxed some since I saw her last (almost two years ago). We spent the entire hour going over what the physiatrist recommended and options for a power wheelchair. She recommended against a scooter due to my various problems (not enough sensation in my hands and rotator cuff tear). TONS of freakin options!

It’s true. Need to get them cut, probably go in tomorrow to have some nice stranger fondle my feet. I find it so much easier to have someone else cut my finger and toe nails. Don’t always have enough strength to cut through these thick things at the end of my wiggly parts. Don’t want them painted though, that tends to annoy me.

Update on the spasticity… not good. Right leg is still curling involuntarily. Tried to use some heat therapy on it last night. That sorta helped the muscles but sent the nerve pain over the edge. So 5mgs of valium and still a tossing sleepless night.

Today isn’t much better. The weather is either warm or freakin freezing my nips off.

The Harry Potter book is on its third day. Yeah, I know. A real fan would be done with it by now. Especially a real fan who doesn’t go out into the world. Bah.

Thought for the day: You can mail order fresh food, meats, dry goods, clothes, electronics, brides and so much more. At what point will our society become so lame that there will be mail order babies?

Last night I took my normal Aleve (shot night) and topped it off with 100mg of neurontin and 2.5mg of valium. Yet I still wake myself up moaning in pain. I’m not doing drugs right if I wake myself up. Supposed to wake my husband up, that’s what he’s there for, right?

Back of my right leg was curling, lovely sensation that. Today isn’t much better. I stretched, unthinkingly, when I woke and went into another spasm of muscle pain spasms. Bad wording that.

The last Harry Potter isn’t holding my attention. Not that I’m surprised by that. If I was ‘normal’ the book would have been finished the same day I started it. Not gonna happen. Its boring me, very unusual that. Attention span is short, mood is short, I am short. Don’t eat my feet.

Tip for the day: Be aware of your surroundings. In my case that means beware.

You starting mmmming and your window will close on your fingers.

Yesterday was a wondrous day. Not only did I maliciously and with malice aforethought murder my hair *buwahahahahahaha* but I also had a massage with my favorite massage therapist A.G. Yup, that’s his name. He goes by his initials because his name is hideous. He told it to me once but I forgot. Back off, I’ve got MS and am entitled to forget whatever I wanna forget. So neener neener.

It had been too long since I’ve seen A.G. last so the deep tissue wasn’t as effective as it should have been. Anyhoo.. I’ve got another scheduled for the 30th so YAY.

Yum, teen boy walking down the street digging in his crotch. Yuck. He sniffed his fingers afterwards. *shiver* And people wonder how I can be content to stay home. Like I’d ever want to shake his hand. Yeeagh! Amazing what you can see out your windows.

But I digress. It was difficult shaving me head. Took me for-freakin-ever to get it done, which is lame since I was using a clipper set. All you gotta do is run the thing over your head. Need arms and shoulders for that. Towards the end of it I had to sit down on the bathroom floor to finish. Standing for any period of time is wholly unpleasant.

Tip for the day: If its too good to be true it probably isn’t. Think about that the next time you go to confession.

Not sure if its after-shot effects or what but I’ve been extremely light headed today. Wobbly, greying-vision, general dizzy type stuff without the spinning. Exorcism like behavior is part of being dizzy, right?

Thankfully yesterdays tension migraine has deflated to a dull roar. Jaws still tight and there’s a nag in my head but I can have a coherent thought. One at a time, no pushing. Queue starts to the left.

Tip for the day . Yup, that’s all I got.

Yuck yuck yuck. Did I mention yuck?

Fatigue is kicking my ass. I could go down for a three hour nap and I haven’t been up for much more than that. The pain in my legs is less and less entertaining. The spasticity is intense.

Took half a valium last night before bed. Woke up this morning with my right jaw/neck/shoulder/arm tighter than a bow string.

My massage guy isn’t available until Wednesday. Let’s see if I can make it without beating someone about the head and neck. Not physically theraputic but it surely does get the blood pumping. Exercise is supposed to be good for people with MS.

It’s been a long time since I’ve posted here. IVF was a bust, too many health problems despite several attempts. I could carry a child but the required medicines would be heinous and costly, not just monetarily.

Since going off all my meds I’ve had a few flares. Short lived, thank god, but there. My balance is for shit, energy is a fleeting memory and cognition has taken a nose dive into an abyss of drool.

The pain is so much more than it was. My legs feel like constant lava flows. Between the pain and the spasticity I’m working on cracking some back teeth. Not that I haven’t done that before, and not that I like repeating myself. Stomach acid has been amped, I just love feeling like I could spew at any given time. Its a lovely sensation, really. You should try it some time for fun and amusement.

After a serious screw up with my clinic my neuro called in some scripts; baclofen, neurontin and valium. I do not want to go back on the first two. Aside from adding to the fatigue they also add to my weight. Not that I couldn’t stand to gain some right now.

The baclofen seems to be adding to my instability (snicker) and the neurontin gives me this doped in the head feeling. It’s going to be interesting seeing how long I can avoid going back on these meds before I hurt too much. Yesterday was the first day I stopped taking them, today I’m about ready to sell my soul to make this stop.

300mg three times a day kept the leg pain and migraines away. I’ve never had migraines until after the exacerbation in May 2004.

I’m titrating off the gabapentin (generic neurontin). Right now I’m taking 200mg three times a day and the freakin migraines and pain are just amazingly awe inspiring. I loathe to think what it will be like when I’m totally off this med. Gotta get off if I want to get pregnant though.

As an interesting aside, my energy and cognition have increased dramatically. I FEEL more like myself. Not completely whole or ‘there’ but more of me is alive again. If I had of known that the gabapentin was causing all that fatigue, and brain fog, I would have switched to something else long ago.

A real fortune from a fortune cookie: Confucius say: Angel with wings not so hot as angel with arms.