THE ODDS (Debbie Does ALS)


For your consideration

I have decided on a name for the carpool matching service: E-Carmony.

Groaning is not permitted.


Testing the waters

Test driving the new carpool on Monday. I guess this means I will not have the same liberty to do those things that one does when one is by oneself in one's car. Of course, if I don't like him I will resume doing those things so as to rid myself of him.

There is, however, the possibility that tactic might backfire. No pun intended.

This post gets worse by the letter. Goodnight.


Now I also have a coachman

Well, that didn't take long. I found someone who is willing to act as my chauffeur in exchange for a free ride to work.

I should be happy. I know everyone else will be happy.

Another change curve...


You should see my throne

Jenny was here tonight to help with (insert task here). Unclasping the necklace, removing the earrings and sweater, etc. etc.; I told her I felt as though she had become my Lady of the Bedchamber, which made us both smile.


I met with Melinda today and informed her it was my plan to stop working at the end of September. Seven more months. Part of me is honestly relieved that this decision has been made, but more of me is sad. Just as with most everything else, I will work through my change curve and will emerge victorious and smiling; I hope it doesn't take too long.

I've also begun searching for a person to share the drive to work. I'm offering a pretty sweet deal -- I'll provide the car, the gas, and the parking, all I need is someone who can drive my car. This has been on my mind recently and today, because of the unbelievable pain in my left shoulder, I decided it was time to take a step. The pain has abated somewhat but the need is only going to increase, so I might as well start the process.

PBS is airing a show on Shirley Temple. Now there's a pick me up.


To do...

Last year, about this time, I wrote a brief entry about Enchanted April, one of my favorite movies. Thanks to Netflix, I'm watching for the second time this week. To do: buy this movie.

Also to do: find a similar retreat and go there for however long I can.


You may have gleaned from certain posts and comments in this journal that, on occasion, certain articles of clothing are deemed unnecessary because they are a hindrance. Perhaps unnecessary is the wrong word -- unwanted might be better. Regardless, they sometimes go unused. Understand? Okay, that was unpleasant...

So anyway. When one adopts this more liberated style of dressing one must also be prepared to deal with a most unfortunate consequence: the wedgie. Yes, you heard me right. I know, probably a topic nobody wants to know more about and, if that's the case, feel free to close this window and go on about your business.

I have noticed that this phenomenon occurs with alarming frequency, usually when rising from a seated position. The land m-ass begins its own continental drift when plopped into a sitting position and, when a seismic event (such as standing) occurs, the newly formed crev-asse attaches itself to the unfortunate fabric upon which it sits. The resulting geographic configuration is problematic.

The wedgie isn't the only problem. Un-wedgie-ing is a challenge, particularly when one lacks the ability to pinch fabric between thumb and fingers. As the fabric closest to the m-ass is the most tightly stretched, the first three fingers of my left hand need to latch on to the more pliable fabric to the south, awkwardly (but, so far, sufficiently) making contact with my curved thumb so that the "tug" can be achieved. Performing this operation in a public space while trying to maintain one's dignity can be trying, but I would much prefer that others witness the tug rather than the lack of.

Had enough?

Cecilia has introduced a new word into our vocabulary. When I go to her for help hooking or unhooking, she asks me if I have a “bra-blem”. She is rather a wit, that one.

Bonne dimanche, mes amis.


Weighting for Godot

My blanket is putting on weight.

In order to move my arms when they are under the blanket, I have  to slide rather than lift them. And I've already complained about the weight of the blanket on my feet -- at times it is actually painful. Some time ago I came across a hint  to help alleviate this problem, something like a tent configuration so the feet are not so constricted. The challenge here is practical application; I'll have to give this some thought.

I had a pleasant conversation yesterday with the Business Care Representative for my company's mobile phone account. He is a very nice young man (I do seem to know quite a number of nice young men, don't I?) and asked after my health. He said he hoped I would continue to progress slowly, and I thanked him.

It got me thinking about slow progression and whether it is all that great.  Initially, yes, it is.  When the only changes you notice include a slower running pace and clumsier handwriting, quality of life is not impacted overmuch. Travel, work, regular day-to-day activities go on pretty much as before; you make little adjustments along the way to accommodate the new challenges that present themselves.  One day, however, you realize that you've made a lot of little adjustments and, while you are still "slow," your quality of life is far more impacted.  What independence remains is clung to desperately until you finally admit defeat and ask for yet more help.

Right now I exist in-between.  I don't like it.  I certainly don't want my progression to speed up, but the slow erosion of my ability to perform even the simplest function is no picnic.


Random act of kindness

Gaining entrance to my office has become a bit troublesome because the door is so heavy. I can still manage it, but only by using  a shoulder or a foot  to hold the door in place as I waddle through.

Today I got off the elevator and turned toward my office, swiped my key card, punched in my code, and was just turning to open the door when I saw an arm reaching for the door handle. The arm was attached to one of the nicest young men I have the honor to call a friend. Isaac works across the hall at the Institute for Justice and had silently crept up behind me, surprising and delighting me by opening the door.

He's a good guy.


Verrrrrrrrry questionable humor

"Whatever Happened to Baby Jane" was one of a handful of movies that scared the h-e-double toothpicks out of me when I was a kid.  Jenny and I were looking up old Bette Davis movies and found this little gem.  I remembered every word of "I've Written a Letter to Daddy" (I think because my own father was not a part of my life and I was young enough and already drama-queeny enough to find the song meaningful, even though my father was merely absent, not romantically dead) and SANG the damn song to Jenny!  Talk about scary!

Bette Davis was one gutsy broad to play this role.

(Found this link to an even better iteration of the first video!)

When I saw the picture below,  I  saw what might have been my future. 
Louise may have her good points.  That said, I could have worked those leggings...


The day after

 Well, except for an unexpected-change-induced shriek-fest, last night was a quiet night. The Klonopin allowed me to weather  another meltdown  with rather a detached air.

After a very restful night's sleep, I woke up to several inches of snow covering my car and all the roads.  Prudence dictated that I stay home so I bundled myself down to my serenity room where I had a good day, did much work without distraction, congratulating myself the whole time that I had made the right choice.

Time for a progress report.

In recent days -- okay, weeks -- it has become more difficult to get out of bed. I can still do it but it requires much more exertion. I sleep on the left side of the bed which allows me to lower my legs over the side and then hoist myself up on my left elbow. The leg lowering action is still very doable; the hoisting part is what is causing the problem. I fear it will not be long before I require assistance in this regard. Very disheartening.

I don't know if I mentioned that I am no longer able to use the hooks to put on my socks or shoes. I discovered this quite by accident on a day when the weather actually permitted me to go  outdoors. I don't know whether it is fortunate or not that I have not been out for several weeks. I suppose it is fortunate for the poor souls who are now forced to perform this function for me.

I've become very clumsy when trying to hold a brush so I have abandoned that tool altogether. My mother  always told me I was lucky to have curls and, though I question whether it is luck, it is what it is and I must make the best of it.  Just as with my clothes, I must accept that my limitations require acceptance of a new look -- a Louise look, if you will -- since I can't do anything about it.

Breathlessness while talking has become more noticeable. It is the rare conversation where I don't find I have to stop and sort of gasp in order to continue. I am very curious what my April FVC  reading will be.

Laughing (and occasionally, crying) and yawning are on the upswing. This past weekend while Becky and I were shopping I found myself laughing so hard that I bent over and could hardly breathe. Poor Becky! I just thought about Uncle Albert from Mary Poppins, and old Mr. Dawes (the chairman of the bank where Mr. Banks worked) and how their laughter caused them to float. In Mr. Dawes' case, it was also how he met his end -- not a bad way to go.  But I digress.

It is time, too, to purchase some grab bars. Just as getting out of bed has become more problematic, so, too, is getting up from certain seats -- particularly those made of porcelain. No TMI, just adding it to this list.


I have added something to my bucket list: I think it would be very, very cool to float around in a weightlessness chamber. I think there might be a facility nearby Washington and I'm going to explore the possibility. If any of my dear readers (all six of you, by my count) have any insight into  how I might make my scheme a reality, please do tell.

I promise I will not become Mr. Dawes.


Mondays suck

 Vanity versus practicality.

How long has it been since I have talked about how I feel about how I look? Probably not long enough, right? Be that as it may, it is time to revisit that topic.

Becky and I went shopping on Saturday because I wanted to see if I could find something -- anything -- that was not what I had been wearing over and over again these last several months. We had a good deal of success; I found a fairly decent pair of jeans (!!) as well as some nice, loose, but not totally unflattering tops. We brought them home to make sure they fit (remember, I don't try things on in dressing rooms), which they did. On a couple of occasions I looked at the tags and reminded myself that I was buying articles of clothing that were easy to get on and off and which would allow me to maintain some little semblance of independence.

I remember back in 1989 when I went on a very serious diet.  I lost a considerable amount of weight and promised myself I would be very careful -- I was concerned about stroke and heart attack, too. Running came later and I said goodbye to smoking. My 40s were promising to be very wonderful years.  I had such plans. Well, as you know, if you want to make God laugh tell her your plans. You know the rest.

Bottom line: practicality is outweighing vanity. Ha ha, literally as well as figuratively.

Next: the melt down.

Last night at 12:30  I woke up to shrieking and moaning, growling and crying. I was  so frightened  that my daughter would come into my room and vent her unhappiness to me -- my heart began to race and I felt a headache crawling around the top of my head. Past experience has taught me not to try to engage her during these times as it only exacerbates the situation. As I cowered under the covers I kept thinking about when she goes to college; how this sort of behavior will not be tolerated by roommates or others in her dorm; how she needs to learn still how to manage her frustration. The more she howled, the more I thought, the more anxious I became. Finally, at 1:40 AM, it stopped. Not trusting the silence, I stayed on alert, finally falling asleep at 2 AM.

And next: the next day

Things are uncomfortable here in my house. My daughter is unapproachable, unrepentant, even belligerent. I'll catch some grief for disclosing that I'm alone in trying to have a conversation with her or thinking it's necessary. I'm told my standards are not normal. More than that I am unwilling to reveal.

The degree of pain I am feeling tonight has prompted me to try a dreaded Klonopin. The crying has stopped, but I feel it hovering nearby.

Not one of my best days.


Almost forgot

Yesterday I posted that my darling daughter had been less than darling in her dealings with me. We steered clear of each other the remainder of the evening but, when I went to bed, she came in to see me. She pulled up my blanket and asked if I remembered how I used to tuck her in at night (how could I forget?) and proceeded to tuck me in. She gave me a kiss goodnight and left.

We had a conversation today about how to manage her frustration and anger in the face of helping me. She was remorseful, sweet, and receptive. She IS a darling and my heart breaks when I think of how she must feel about what is going on around her.

The promised snow, she has arrived

As I sit here in my serenity room, watching the snow fall on top of the snow from the weekend, three things come to mind. I will share (you knew I would, didn't you?):

1. On the Weather Channel there is a program called When Weather Changed History. Think about it -- does that even make sense? How can weather CHANGE history? Certainly weather can impact events, but it does not change history. Semantics, people.

2. With all of the lovely snow we have gotten, it was only a matter of time before the rude and arrogant made themselves known. Cars with snow caps abound on roads throughout our region, caring little for the consequences their lack of effort might bring. It amazes me that people can be so stupid -- I actually saw a car making its way up 95 toward Washington, completely covered except for one little space on the windshield. Unbelievable.

3. Advertising for the upcoming Susan G. Komen 3 Day Walk for the Cure is in full swing on both radio and TV. Please do not misunderstand me -- I applaud this effort and my heart goes out to anyone who has been touched in any way by breast cancer, but one of the "personal stories" used in this advertising makes absolutely no sense to me at all. I'm talking about the woman who says (I am paraphrasing as I am unable to find text or a soundbite) that she never got to have a say in whether or not she wanted to lose her mother, and now she feels as though she's had a chance to have her say. What does that even mean?

Does that sound too bitchy? I hope not. That's not my intent.

On a weather note, I just received an alert that the federal government is closed again tomorrow. My memory may be faulty, but I do not remember a time when the government was closed for three consecutive days because of weather. It's a very good decision because there are no doubt many rude and arrogant snow cappers being kept off the still sketchy roads leading into our nation's capital.

Okay. My soapbox is beginning to buckle under the weight of all my opinions. Methinks it is time for a nice, refreshing Corona Light.

Yet another forecast

Where I live:
Snow, mainly after 2pm. High near 32. Light and variable wind. Chance of precipitation is 90%. Total daytime snow accumulation of 1 to 2 inches possible.

Tonight: Snow. Low around 27. North wind between 3 and 7 mph. Chance of precipitation is 100%. New snow accumulation of 3 to 7 inches possible.

Wednesday: Snow. The snow could be heavy at times. High near 32. Breezy, with a northwest wind between 11 and 21 mph. Chance of precipitation is 90%. New snow accumulation of 2 to 4 inches possible.

Wednesday Night: A chance of snow before 9pm. Mostly cloudy, with a low around 22. Blustery, with a northwest wind between 16 and 21 mph, with gusts as high as 32 mph. Chance of precipitation is 30%.

Where I work:
Snow, mainly after 2pm. High near 32. East wind between 3 and 6 mph. Chance of precipitation is 80%. Total daytime snow accumulation of less than one inch possible.

Tonight: Snow. The snow could be heavy at times. Low around 26. East wind between 6 and 9 mph. Chance of precipitation is 100%. New snow accumulation of 5 to 9 inches possible.

Wednesday: Snow. The snow could be heavy at times. High near 31. Breezy, with a north wind 14 to 17 mph increasing to between 22 and 25 mph. Winds could gust as high as 36 mph. Chance of precipitation is 100%. New snow accumulation of 4 to 8 inches possible.

Wednesday Night: A chance of snow, mainly before 9pm. Cloudy, with a low around 21. Blustery, with a northwest wind between 20 and 24 mph, with gusts as high as 37 mph. Chance of precipitation is 40%.

Working from home on Wednesday; keeping my options open for Thursday.

This is getting very, very, VERY old.


Is it spring yet?

1. 3-6 inches has been upgraded to 10-20 inches. Those of us in the South will not see as much accumulation -- but what does that mean?

2. The heat has been restored and the house is warming up. Thank heaven. I was all set to go to the hotel up the street but encountered reluctance from the other residents of my abode. Cecilia, in true emo fashion, said she'd rather learn to torture herself and not spend all that money. This made me laugh because she's quite adept at spending my money.

3. Cecilia. I did not make it snow and I did not close the schools. I know you are unhappy and I know you consider me a safe harbor. But your behavior tonight -- your impatience and unkindness -- was hurtful and I did not deserve such treatment. I am writing this rather than attempt a conversation because it's better for us both.

I could use a vacation.

Still no heat

Courtesy PostSecret

News from the front

Winter storm update: despite what yesterday's post may have reported, this morning's news advises we can expect between three and six additional inches of snow from Tuesday night into Wednesday. This may push me completely over the edge.

Over the weekend I read e-mails from my friends bemoaning the power outages they were experiencing. I kept silent, not wanting to tempt fate (much like I don't discuss traffic on my way home for fear the traffic gods will take revenge). Late Sunday afternoon I had conversation with Lynne about this very subject, making sure to be respectful to the power gods. Clearly, the power gods had an evil sense of humor -- at 9:30 PM we discovered our propane tank was empty. The only air blowing through our registers was cold. With any luck we will have a delivery today if the truck can make it down the road, not our road (which is clear) but any other road it must travel en route to my house.

I don't mind a cold house, and I have always loved sleeping in the cold, but there's cold and then there's COLD. Yesterday was COLD. A second blanket was deemed necessary. While the blanket was delightfully warm, soft, and inviting, it was also heavy. It was not heavy to John or to Cecilia, but they have an abundance of functioning muscles. I was unable to pull the blankets up, requiring Cecilia's assistance. The weight of the blankets was too much for my feet -- in particular my toes -- so there was much shifting around under the covers.

Getting ready for work this morning was also a bit of a challenge because it was so cold and, as I have mentioned before, I don't do so well in cold anymore. It is as though all my muscles contract at once and I look something like the zombies from "Thriller" -- without the dance moves. There is also the yawning, another reaction to the cold. So imagine, if you will, a yawning, lurching zombie applying makeup with frozen claws. Judging from the screams of the passersby on my way to work, I'm guessing my description is fairly accurate.

So, my way to work... I had no difficulty getting out of my driveway or my street or my road, and Interstate 95 north was clear and wide open. Once I hit the HOV, however, it became Death Race 2000. There was one inconsistent lane -- often comprised of some of the shoulder -- most of the way but, occasionally, no lane was visible at all. Not being one to speed through sketchy conditions, I maintained a very moderate 40 mph (plus or minus, often minus). Several of my fellow commuters, being either more confident or more foolhardy, would zip past me on the snow-covered side of the highway. The exit ramp and Route 110 were in good shape, Route 50 wasn't bad, and Fairfax Drive was passable. Since the federal government is closed today there is very little traffic, but my commute was still more than an hour.

Cecilia will be out of school today and tomorrow. She had cabin fever to such a degree yesterday that she and her dad walked the mile to our local Target. The physical activity as well as the retail therapy (she bought some gel pens) did her a world of good.

You know what would do me good? The disappearance of all these tons of snow.


Don't exhale just yet...

NWS Zone Forecast
300 PM EST SUN FEB 7 2010







From the NOAA website:

....Tuesday: A slight chance of snow before noon, then rain and snow likely. Cloudy, with a high near 35. Calm wind becoming east around 5 mph. Chance of precipitation is 70%. New precipitation amounts between a tenth and quarter of an inch possible.

Tuesday Night: Rain, snow, and sleet, becoming all snow after midnight. Low around 28. East wind around 6 mph becoming north. Chance of precipitation is 80%. New precipitation amounts between a quarter and half of an inch possible.

Wednesday: Snow likely, mainly before noon. Mostly cloudy, with a high near 35. Chance of precipitation is 60%.

Wednesday Night: Mostly cloudy, with a low around 21....

Really. I'm quite over it, really I am. Even though it sounds like the accumulation won't be significant, any is too much.

The White Doom

A dear friend of mine, as witty as he is wonderful, kept a diary during what was being called "snowpocalypse." I present this for your viewing pleasure.



News of the day

Yesterday there was a post on PLM advising of yet another death. These days I am a "lurker" but, when I actively posted on the forum, I had some interaction with this patient, a mid-40s woman who had arm onset. In recent months her FRS and FVC had dropped and she had not posted in a while. Consequently, I was saddened to learn of her death but not surprised. It's one of the characteristics of this support website that the names and faces go through cycles. I have only been a member since December 2007, but that is long enough to have observed this phenomenon. What amazes me is the number of people who are still going strong -- living with ALS for 10, 15, even 25 years.

Tomorrow I head to Richmond with my chapter of the ALS Association to meet with state legislators. This is not a visit to plea for money, rather it is to tout the good work of the ALS Association and to ask that the state partner with that chapter to continue providing support for ALS patients in Virginia. It should be an interesting morning.

This morning, as I was attempting to back into the handicapped spot in the garage, my gearshift refused to cooperate. This is not unusual -- it occasionally takes a couple tries before it's firmly in reverse. Anyway, as I was trying to get the car securely in gear I heard a horn honk at me which served to make me equal parts embarrassed, frustrated, and irritated. Finally successful, I backed into the space, stopping midway to mouth my apologies to the horn honker. Just as with the arm waver from last week, I was prepared to deliver a rant should I happen to meet the driver in the elevator. Imagine my surprise when I received an e-mail from the catering manager at the hotel next door to the office apologizing for her seemingly aggressive honk which was intended (she said) to alert me that I had plenty of room to back up. She said she was embarrassed when I stopped the car to apologize and she realized it was me. I thought it was very nice of her to write, and I responded in kind. No harm, no foul.

Now for some levity. I present to you a series of e-mails from this morning:

I wrote: Our brand-new doorstop, purchased only yesterday, has gone missing after only one day of duty. When last seen it was holding open the door that leads into the GFC. It is to be hoped that, since the doorstop does not have feet, it has not traveled too far. If you have seen the missing doorstop or have any intel as to its whereabouts, please call the doorstop hotline on extension 4478. For your protection, all calls will remain anonymous.

Thank you for your assistance in facilitating the safe return of the newest member of our supply room inventory.

One response I received was: Doorstops, you just can't trust them these days. They do what they want, when they want. I bet $10.00 it's hanging out at the local hardware store with all its other doorstop thug friends discussing what door they're going to "hold-up" next.

Followed by: I can't say for certain but I think I saw that very same doorstop stopping on N Glebe Rd. holding a sign that said will stop door for food............ It was low to the ground which made it difficult to see so I can't say for certain.......

I did receive an anonymous tip which prompted me to make a phone call, which resulted in the safe return of our missing doorstop, to wit:


I am pleased to report that the doorstop has been returned. Recognizing that we are a force to be reckoned with, the kidnappers came forward quickly. Thanks to all who provided tips; your commitment to Truth, Justice, and the American Way is noted.

Anyone wishing to welcome the doorstop may stop by my desk at any time.

Very silly. I hope others were as amused as I was.

Time to grab some beauty sleep. Big day tomorrow.



Not such a great day today. Despite the lack of any physical evidence, I suspect my hormones are still pumping at full cycle. Regardless, I can't seem to shake a sadness about the things I have lost and am losing.

Tonight a group of women I have known for years and with whom I used to run came to my house for a mini buffet in honor of another friend who was visiting from out of town. In addition to providing food for the buffet, these dear souls also prepared food for my freezer (hence incr-edible). Their kindness knows no bounds, their generosity is unparalleled, their friendship is genuine and much cherished.

It took about three seconds for me to create a spectacle by crying when the guest of honor said she missed running with the group. I feel like that, too. I excused myself and went upstairs, followed closely by my friends. I felt ridiculous, ashamed by my emotion. Not quickly enough, I recovered a bit of my dignity and went back to the group. From that point on all was well, but I did notice that conversation steered away from running. When it was reintroduced, it was often nostalgic and involved races I had run. In hindsight, I am more embarrassed about that because I do not want only to be happy when remembering things I used to do -- I want to be able to celebrate what my friends are doing now without being a stupid head crybaby idiot.

I wonder if I will ever get to a point where I don't ache for what might have been. This applies not just to running, but to so much else.

I am lucky to have such supportive and loving friends in all areas of my life. I need to be better at managing my feelings and my acceptance of the inevitable, at least for everyone else and maybe a little for myself.

But what I wouldn't give...

Maybe Lux would help the claws

(courtesy Michael)

This is not NASCAR

To the man in the red car behind me as I was coming in to the garage: I'm very sorry if my (lack of) speed in getting through the gate caused you a 3 second delay in getting to your parking spot, then to your office. On the plus side, however, had I not been so slow in getting out of your way you would not have enjoyed the arm waving exercise you performed, rendering you a more fit individual. I tried to wave back but, since the only arm I can raise with any authority is my left, you likely did not see it as it was too near the door.

You may also consider yourself lucky that it takes me so long to get out of my car because I was formulating a lovely, early Monday morning rant to which you would have been subjected. As my children (and scores of people in the service industry) can tell you, I am the queen of providing feedback -- both positive and negative.

Initially I was angry that you were impatient because I am slow. It occurs to me that I am at risk of being impatient because you are slow -- slow witted, that is. So I will take the higher road and forgive you for being a total idiot.

Mains et bras d'orange

This is what happens when you answer with total honesty.

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