Tuesday, June 23rd, 2009

My Equation of Managing MS

(This afternoon, I’m at work, hiding from the heat--98 degrees, 108 degree heat index. Healthy people are discouraged from spending time outside--no way am I risking things.)

 

Pragmatism=Determination+Awareness-Confidence-Bliss

 

It is not sadness that leads me to this conclusion. I am not morose or gloomy. At times, my state, “Like to the lark at break of day arising / From sullen earth, sings hymns at heaven's gate” (too many syllables in first line—weird), but, like the lark, my state must return to earth. As “Crash” told “Nuke,” who wanted to just enjoy the “moment,” the moment’s over.

 

(My roommate recently finished the second draft of a short screenplay--a well-written one, but his first. The next day, he described his emotional state: spiking and plummeting, repeat. Yeah. I offered advice, based on my years of writing experience: get laid, or start working on the next script.)

 

Keep moving. Not because I’m running away, but because I don’t have the resources to survive in a stopping place. 

Awareness is the stylobate, determination the plinth of the pillar of Pragmatism. Confidence and bliss are the cloying children of Hope, cringing in a corner of Pandora ’s Box. Mixed metaphor aside, the latter do not belong with the former.

(Leave a comment)

Sunday, August 3rd, 2008

Danger update, Will Robinson

Temperature now 98 degrees--heat index, 110 degrees.

I wasn't trying for irony in my previous post. Two summers ago, I ended up in the ER because I got overheated. Not happening, again.

I'm not going outside. I'm not even spending time in the kitchen, which faces southeast.

Yikes!
(5 comments | Leave a comment)

What is Dangerous?

Handling snakes and spiders Nah. They're friends

Approaching a group of women at a bar to ask one of them to dance? Not any longer. If the answer is "No," and laughter follows me as I walk away, I know the problem is their's, not mine.

Spending any time, outside, when the felt air temperature is 94 degrees? Damn straight!

In Lawrence, the temperature is expected to reach 97 degrees, today, and 100, tomorrow. My plan involves getting to work as early as possible.
(4 comments | Leave a comment)

Monday, July 28th, 2008

A "First Time" Mistake

By 7:30 PM, I was near collapse, due to sleep disruption from the night before and being squeezed like an over-ripe tomato by the heat and humidity in my workspace. I knew sleep would come over me, so I thought to take my third, daily, 20mg dose of Baclofen before Morpheus carried me off.

I also take 20mg of methylphenidate twice a day, and I take the first two doses of Baclofen along with my ADD meds. (Yes, you can see where this is going.) The way I tell them apart, short of reading the labels, is by having the prescriptions filled at different stores, each store using a different lid for its bottles.

Part of my addled brain thought about my forward thinking while I, in the insufficient light, popped a small pill in my mouth and dry-swallowed it. After I dropped the bottle in the Ziploc bag that holds the bottles, I realized my mistake. Okay. Take the Baclofen and get to sleep before the methylphenidate kicks in.

Well, I slept three hours. Strange dreams and heat build-up woke me. Now, I'm making my brain work in hope of exhausting it.
(2 comments | Leave a comment)

Sunday, July 27th, 2008

Updates . . .

I got my 2001 Cruiser back, yesterday.. My son and I picked it up before 8:00 AM, with the plan to run errands before the heat became too great for me. Well, the heat came on ahead of schedule. I spent the rest of the day recovering.

"We got lucky," my mechanic told me. "I didn't have to tell you, 'You need a new engine'." Whew! After learning about what had been happening, he offered an assessment that I'm draping in metaphor. The problem with the radiator fan, which had stopped working, may have been lurking in the cave of Automotive Surprises, but the feral dogs of extreme heat and big city driving enraged this beast.

Driving in Lawrence, mind you, never caused overheating. Repeatedly driving my son to his KCMO day camp, and picking him up, during the extreme heat and humidity of summer took this egregious toll on the Cruiser. Why was I doing so? To help my son's mother, who struggled with complications from a pregnancy I didn't have a part in.

*shakes head*

My ex-wife has talked with the "son of a b****" who dropped her. He believes he has met his "obligations" to her. Apparently, he perceived their relationship as a "business arrangement." She and their future son would take care of him in his old age.

*rolls eyes*

Recently, she called me at work, while I was at my desk. "I finally got a hold of you!" she said. "You had a hold of me, once," I replied. "Then, I foolishly let go of the best thing I had in my life," she said, her tone suggesting this is what I was thinking. "You finished the thought," I said.
(1 comment | Leave a comment)

Friday, July 25th, 2008

Good news--of a sort.

As I am neither a mad dog, nor an Englishman. I've not ventured out to brave the sun at any time, today.

I finally felt well enough to call the Firestone shop to talk about my $900 burden. Rebecca, at my suggestion, helped me apply for a Firestone Card over the phone. She'd mentioned this option, yesterday, when I'd started breathing again, after she'd broke the news to me.

The system approved me for an account for the full amount of the cost of the repairs, and I was rewarded with a ten percent discount. I am so special.
(2 comments | Leave a comment)

My ex- is such a martyr I want to say to her . . .

"Do you need a match, Joan?"

Her doctor advised her to have a blood transfusion and to take two weeks off because of the miscarriage. She will do neither, in large part because she starts a new job, Monday. As well, she wants to play the heroine for our son. and treat me as her sidekick.

She scheduled a play date for our son without consulting me, and she expected me to pick him up. She claimed she needed rest, and our son needed to socialize; so, it is, from her perspective, necessary for me to help her. She acts as if I haven't been helping her all summer. Hell, my car problems first arose while my son and I were driving through downtown Kansas City, Missouri, when the temperature was 99 degrees, and the heat index 104.

Today, in Lawrence, the temperature is approaching 90 degrees, and the humidity is above 71 percent. I told her it is too dangerous for me to be outside. She had to accept it.

I am immune to her misguided attempts at guilt. I won't play Tonto to her Lone Ranger.

(5 comments | Leave a comment)

Friday, May 16th, 2008

A few thoughts before bedtime.

  1. An intense week, but the semester's over! Yaaaay!
  2. Heat build-up at work was like a giant fist, squeezing out focus, drive, and ability, until little remained but pulp. It was so "gripping," today, so much of my nervous system had shut down that my brain couldn't convince my body to stay in the wheelchair. 
  3. My son has decided we should reread The Hobbit.
  4. Friday afternoon, July 12, I will present my paper (as yet unwritten), "Science Fiction as Unintended Prescience," at the Science Fiction Research Association's annual conference.
  5. The driving arrangement with my ex- has become untenable. Her behavior towards me is erratic, unreasonable, and martyr like. Could this change be the result of her quitting smoking, going off Paxil, and being several weeks pregnant? These--and many other questions.
(Leave a comment)

Saturday, October 27th, 2007

I may have an answer to an unanswered question--MS related

In the previous post, I wrote about the effects of heat while I slept.

Less than two hours later, pain flared in the right-side of my neck and stayed there for hours, actually expanding to my shoulder. Near-crippling, stripping my thoughts and my concentration. 

So, what's the answer I found? First, what was the unanswered question?

For about 12 months, during 1997 and 1998, I had suffered with pain like what I experienced today. I went to doctors such as a neurologist and an osteopath. X-rays and an MRI revealed nothing. What was happening?

As the pain I experienced then was the same as I experienced today, and as MS, in its subtle and subversive way, can sabotage the brain years before it is diagnosed, I am willing to go out on a limb and suggest that my neck pain from over ten years ago was due to the effects of heat exposure related MS.
(Leave a comment)

"The Heat is On"

Two days ago, I turned on the heat in my apartment for the first time this season. I did so for the sake of my cats and my son. The heat is not set above 70 degrees, but the furnance kicks in regularly, dispersing heated air thoughout the place (sure, what else would it do?). I relearned what this means for me.

Even though I slept without any covering, the heat pressed down upon me as I slept. It was a half hour before my brain could convince my body to rise and walk to the kitchen to turn off the alarm. I am extremely thirsty. My eyes feel like an adhesive has been applied to the inside of the eyelids. My head feels too heavy, drooping from my neck when I don't make a conscious effort to keep it up. My thoughts travel through cold molasses. (These two paragraphs have taken ten minutes to compose.)

All is not lost. This is what I can do: wrap a thin towel around a frozen gel pack and place it atop my pillow. For now, I wish I could kick start my brain, which might then do the same for my body. (God, Descartes got it wrong.) 



 
(2 comments | Leave a comment)

Friday, October 19th, 2007

There are handicaps, and then there are handicaps

A few days after I sent the memo I'd posted here, my supervisor asked me to come to her office to discuss the memo. 

Read more... )
 
Things have improved. It helps, I think, that I have been doing a kick-ass job at work. My efforts have been making our department, me, and, of course, her look good. For example, the presentation a student and I did on ADD impressed her enormously.
 
So, for the disabled, it seems, when attempting to succeed in the workplace, health issues are not the only handicaps that must be faced. 
(Leave a comment)

Sunday, October 7th, 2007

Second Memo to My Supervisor

Have you noticed how confining language can be? This is especially true when trying to discuss difference. Consider the word “heat” as it concerns multiple sclerosis.
 
A wide chasm separates your approach to “heat” from that of mine. On your side, “heat” is an external, often pleasurable, phenomenon. On my side, “heat” is an internal, disruptive force that must be confronted daily. If the internal body temperature changes, by even one degree, the nervous system begins misfiring--more so than it usually does.
 
With MS, the body plays a Dr. Jekyll/Mr. Hyde game, first attacking and damaging the protective sheath of the brain’s nerves. Then, as Dr. Jekyll, it does a lousy job of making repairs. The resulting scarring impedes signal transmission. The brain needs to either send the same signal multiple times, or needs to find another route. Either condition involves extra work, and extra work generates more heat. A vicious cycle unseen by others.
 
Read more... )
 
How about a personal analogy? Imagine how your affect, attitude, and ability to work would be affected if when you arrived at work, you had to wear a shawl that a cat slept on regularly? You wouldn’t be allowed to take it off, still were expected to do a full day’s work, and had to always be pleasant and available. Does even thinking about it make you want to sneeze?

The analogy falls apart because you are able to easily stay away from cat dander.  Except for my apartment and car, I am at the mercy of others. Yes, you arranged for the school to purchase a room A/C for me. It is, however, a stopgap measure at best because any cooled air from the building's A/C finds its way into the Tutoring Center by leaking in from the hallway, which is always cooler than my workspace. Without any air exchange, the room A/C is as effective cooling me as a water dropper would be to quenching the thirst of a person suffering dehydration.

Every time you tell me the warm, humid air feels good to you--a healthy person--I wonder if I've not effectively explained my situation. If I had, would you make such a statement? Perhaps I'm wrong to take your admission as lacking sympathy. But, would you say to someone you understood to be blind, "Really? I can see fine"?

I hope this lengthy missive is more informative than my previous efforts to explain things.

Thank you.
(4 comments | Leave a comment)

Saturday, July 7th, 2007

MS as a chapeone? Part Three

The title of these entries is intended to be ironically whimsical (or, to quote Eric Blore, from The Gay Divorcee, "Whumsical.")

Comparing MS to a chaperone came about because I was comparing this date to ones I had before MS, or before it worsened. Please realize I didn't date at all for almost three years. In what ways did it differ, then?

She and I "strolled" about the mall--she walked, I rolled. The 'chair interfered with hand holding, arms about our waists, sidelong glances. My constant enemy, heat, prevented picnicking and the chance to stretch out together on a blanket. We had also planned to watch Casablanca at her place, but the broken AC quashed this plan.

We had fun, never lacking for conversation, frequently laughing. Our date ended with a kiss. However, I ended the date early because I knew how tired I was from the driving, the heat, and the physical expenditures. Not that I was spent, but I had to conserve energy for the drive home. (Coming to realize that it would be best to only date women who live within a 30 or so-mile radius of my town.)

So far, as I test the dating waters again, MS comes off as a pesky, younger sibling who has tagged along, squirming between my date and me, keeping us from doing anything more than shaking hands at evening's end.

What I need to do, since I can't ditch this sibling, is rethink dating activities so as too minimize the annoyance factor.

Open to suggestions. Don't be shy. What works for you?

Your "whumsical" friend in need.
(5 comments | Leave a comment)

Friday, June 30th, 2006

Feeling up to an update

Three weeks without coffee (give or take a cup, here and there) and three days on Provigil.

For those readers who don't know, Provigil is a treatment for narcolepsy that also helps some MS sufferers battle MS-related fatigue. Today, I feel more alert than I have in weeks. I am not struggling to stay awake and my concentration is improving. The previous two days were difficult because of severe eye strain and disrupted sleep.

The near absence of coffee has had two benefits. One, my internal body temperature isn't increased by consuming this hot liquid. Two, bouts of urinary urgency and frequency have virtually disappeared. Instead of dashing to the bathroom the moment my body sends out the tiniest signal, I am able to wait, suppress the urge, sometimes going 20 minutes, or more, before urinating.

Summer heat, though, remains brutal and unrelenting. And, it doesn't take much exposure to affect me. My gait and balance are the chief victims of this adversary. This morning, I asked the nurse who gives me my weekly injection to get a wheelchair and roll me back to my car.

A wonderful, long-time friend, from Utah, just rode in the MS 150, with her husband and their youngest son. All of ten, he completed 75 miles! Their efforts remind me that many people are committed to helping. They are on my long list of reasons to keep moving forward.
(5 comments | Leave a comment)

Wednesday, April 12th, 2006

Welcome to the Icebox, or _The Iceman Cometh_

(Does "icebox" still serve as slang for "refridgerator"?)

The temperature in my apartment is 62 degrees F.--and I thrive in it.

As with any electrical system, the brain is sensitive to heat. When the temperature rises so does resistance. My swiss cheese of a brain already works harder than a healthy brain. Increase the internal thermostat slightly, and the body begins to shut down.

The building I work in has a two pipe system. Can't easily switch between heating and cooling. Management waits as long as possible before turning on air-conditioning for spring and summer. My office is on the sixth floor, and hot air rises.

Without airflow, heated air gathers and stays and pushes me into submission. I can't concentrate, I can't remember, I can't think. Dexterity, fine motor control, and ambulation diminish.

Susceptibility to heat is the one symptom people with MS have in common. Before MRIs, one test for MS involved placing a person in a hot tub for about 20 minutes and observing his or her behavior out of the tub. The need to stay cool is of such a medical necessity, MS sufferers can deduct electric bills from their taxes.

I didn't wear a coat once this winter. I didn't take any exception to the strange looks or aghast questions. "Aren't you cold?" Or, "Don't you have a coat?" Yes, in the car in case I need it.

All right, I've always liked the cold. I was the only member of my family who thrived in Wyoming winters. In the end, though, I want the low setting of my apartment's thermostat to be by choice, not necessity.
(3 comments | Leave a comment)