Archive for August, 2007

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.

Fatigue hits me three ways:
Energy - Sloths move too fast for me to catch. Raising a finger is a monumental task. Don’t even think about picking the nose, that would be impossible.
Alertness - you could throw a ball right at my face and I might notice. After I got hit by it.
Willingness - My get up and go got up and gave me a raspberry before traipsing out the door to party like it was 1999. Without me. Ungrateful basta… ah, who cares. Takes too much energy to get riled.

Think of fatigue like pain, there’s different kinds and different intensities. Fatigue can hit you whenever and wherever you are. Getting out of bed can lay you so low that getting back into bed is too much to ask of you, the floor is closer and looks comfy enough. Weeding that garden can be an achievable task until you sit down to admire it only to realize that you’re drooling on your chest and that sound that woke you up was you snoring. Here’s praying your neighbors are nice and didn’t get any video for YouTube.

Your energy is like a $50 bill. You’re playing tourist in a cool city and that’s all you’ve got to spend each day. That needs to cover your lodging, food, trinkets and anything else that comes up. Because you have a magic pocketbook every morning when you wake up there’s a crinkled $50 in there, anything you saved from the previous day has magically disappeared.

Budget your day. I can’t stress that enough. Planning what you’re going to be doing that day and budgeting not only your time but your energy is the only way to make it through a week. I’ve stopped planning weeks ahead because I’m not able to meet those commitments. I’d rather have a dirty tub for an extra few days than feel like a loser because the day I planned to scrub it down was a bad day for me.

Medications
Ah, Mr Pharmacist. How I love thee. Let me count the pills! Here’s my take on what I personally have tried. Your reaction may vary.

Provigil
Very mild. It kept me awake but didn’t instill me with profound energy or willingness. I was mildly more alert than normal.

A lot of people can take this without feeling like they’re on speed. There wasn’t any brain-crawl sensation, no jumpiness, nothing like that.

In my ever so un-humble opinion this drug works best for mild to medium cases of fatigue.

Ritalin
The speed of anti-fatigue meds. My brain buzzed and my heart did an ocassional flutter but generally ritalin was well tolerated. There were some mild emotional disturbances with this drug - I was much more irritable.

A mild dose of speed never hurts for medium to severe cases of fatigue.

Amantadine
This is a low side effect drug. Helps with muscle fatigue ONLY. Muscle fatigue wasn’t covered above because I’d never, until now, experienced it all of a sudden. By all of a sudden I mean there wasn’t any activity that caused it. Your muscles can fatigue quickly or be in a state of perma-fatigue.

My biggest complaint with it is the appetite suppression. For some that wouldn’t be an issue, for me I dislike eating enough as it is. Small hurdle in the grand scheme of things.

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.