Race pictures!!!

Wendy, Laura and moi. The two of them jumped right in and started taking care of things.

I'm talking to Dan, Becky's talking to John. Cathy in the yellow, and you can see glimpses of Mike, Art, Jannette, Brent and Janice.

Cathy, Tam, Lynne, Jannette and Janice.

Oh my. Kendall, Keri, Allison B behind Keri, John, Becky,
Ricardo, Mike, Dan, Brent, part of Allison S, Adam and Cathy.

Fabulous people, fabulous race, FABULOUS day!

Visual Updates and a Ramble

Here we have the new orthotic. Our knife model being unavailable, I had to step in. This splint, in a subtle shade of gunmetal, is the perfect complement to my race tshirt and sweats. I am the beauty queen of Paul Lane.

The claw is looking fabulous these days, too.





My apologies to the faint of heart. C Claire, who helped me, has been apologized to in spades. Her description of the above: Disgusting, gross, scary.

My hands have never been pretty, but the left (not shown) is a Dove Girl's hand compared to this mess. The ravages of age are bad enough, throw in a muscle witherer and you've got a real winner.

Pity party over. Time to report on the .47 reading in the Lithium blood level!! Shooting for between .3 and .6, so Dr Bayat doesn't feel any need to adjust the dosage. More blood work in two weeks.

If the slow progression can slow to a crawl, if I can exist like this for another 30 years (asking too much? Hell no!), I'd be happy. After all, having full use of one's right hand and arm is SO overrated, don't you think? No, it's not overrated. I will never take for granted ever again the movements our bodies make.

Have I told you this story? When I first started running, and discovered how much I loved the trails in the Fredericksburg Battlefield, I went out one cold winter morning, all alone. I ran and ran until it occurred to me I must be some sort of fool, running in the woods when no one was chasing me, not chasing anything. I continued and was laughing to and at myself when all of a sudden I felt like--don't laugh--a deer. Yeah, I must have zoned, but it was the most wonderful sensation. I felt every muscle in my body propelling me forward, each step, each turn, each hill. I marveled at the machine that was my own body and was transported. After years of inactivity, smoking, SLOTH; here I was running, running, running, breathing the cold air, being a deer. Sounds idiotic, but that's how it was. And still is, sometimes.

I'm thankful these days for every step I take, running, walking, doing the Happy Mommy dance with Cal's kids, all of these little gifts in the form of a footstep.

Allison, did Beck used to do Happy Feet? Well, that's how it should be always.

Sweet dreams, my loved ones.

Le Splint

I think I love the orthotic. When I woke up and took it off, my hand didn't feel all tight and stiff. Okay, it felt stiff, but not curled up stiff. And my fingers felt happy. If my fingers are happy, I am happy.

It's ugly and, once on, restricts anything I might do with my hand. I actually don't care. Today I love it.

I believe this is called adapting.

Recap

Race: Wonderful. I was amazed at how many people showed up. It wasn't the best weather (well, for me it was perfect) as it was overcast, drizzly, and chilly. Ran in a tank and felt great throughout. My pace was casual, I took walks (despite an incredulous look from a friend) and I was surrounded by friends the whole time. Becky, John W, my sister and my cousin, Lynne, Adam and Ricardo, Tam and Cathy and Melanie, and friends from the law firm and D-land. Jeff from IJ, Isaac, Allison S and Allison B, Kendall and Keri, even Tim the FedEx man. And the crew from TIS, without whom the race wouldn't have happened at all. I hope I get some pics so I can post them here. I'm told over $7600 was raised for the benefit of the ALS Association. Thank you and well done to all my kind hearted and generous family, friends and supporters. I love you all.

Balmer: Also wonderful. Our hotel was perfect and we had an upper floor with a nice city view.

Upon arrival the weather turned fabulous and we walked to Federal Hill and shopped (of course we shopped!). Jenny found a cute little dress and flip flops and C Claire found a pair of shorts. We returned to the hotel, cleaned up and got a cab (thank you, Mr. Cabbie, for the reduced fare!!) to the previously mentioned restaurant in Fells Point.

As it happens, the unnamed but much appreciated recommender ALSO picked up the tab for dinner (I'll never be able to adequately repay such a kindness).

Sunday we drove to the pier and met our tugboat connection.

We were the coolest people on the harbor, getting our very own tugboat ride. Becky and Jenny each took a turn at driving, and Jenny managed to do a donut (much to our tugboat friend's discomfort!). Fortunately the Coast Guard wasn't watching! None of us wore our captains hats, so we didn't get to experience the brig. My heartfelt thanks to my dear friend for accommodating this group of landlubbers.


The Orthotic: Got it today. It's big. Ugly. And a very visible reminder that I've moved a little closer to that which I try so hard to face with a smile. My smile wavered today, but Aaron (the orthotics guy) said he'd have none of it, that I was in incredible shape given the length of my diagnosis (compared to others....some, many, of whom are already in wheelchairs). I'm trying hard to be brave, but....I'd thought perhaps the twitching had decreased some since I'd been on the Big L (that's for you, Becky) but it hasn't. Not really. While I write this I feel my shoulders and legs going crazy. When I rest, my arms from shoulder to hand move so much I feel like they'll jump off the desk. HOWEVER. I'm still strong and only have the one dumb weak limb, so I am grateful.

Lots of gratitude floating around this post. Seeing all my friends on Saturday, getting the surprise Saturday night, the tugboat ride Sunday, and spending my weekend with the daughters I love so much, I realize just what a lucky woman I am. And for that I am grateful beyond measure.

Mother's Day Weekend!

So, after the race, the ensuing conviviality, beer, lunch, and shower (maybe in that order, but who knows), the girls and I are off to Baltimore.

We're staying near but not too near the Harbor and have reservations at a lovely little restaurant that comes highly recommended (thank you, unnamed but much appreciated recommender). The next day we are going ON A TUGBOAT! Another unnamed but much appreciated tugboat type has made the arrangements. All I can think is that this would be a very appropriate time for the girls and I to don our captains hats (shades of the Outer Banks!) but was told quite emphatically such attire would land us in the brig. So no captains hats for us, sad to say. We would have been very lovely, and it is rather a loss for the tugboat people.

It should be a fabulous weekend.

Gratitude

The race is tomorrow.

I've said this to a few people today but want to put it here so it is said permanently: The people who have gathered together to organize, support, run or otherwise participate in this event are incredible. Many of these people I have known for less than a year, but their kindness and generosity humbles me. I am truly, truly honored to know them. Their example is one I hope to follow.

Dining Aids

Almost forgot. I have decided to purchase my special dining utensils and wanted to show you a few pictures.

This is the type of knife I think will be most useful. Our lovely model has pretty fingers and a lovely, muscled hand. This must mean my hand will look as beautiful if I use this oh so attractive and functional knife! And for the low low price of $19.99, it's a steal!


This spoon looks just like the one I got at the clinic. The handle is very large, but it is awkward.


There are others I can buy that have bent heads. As I said previously, very Dali-esque.



Okay. NOW it's time for bed. XOX

Need to run but ate a cheeseburger instead

There is so much s*** rolling around in my head today after the email exchanges with my brother. It makes me tired to think about it. One of the best ways to deal with this would be to go for a run BUT I ran this morning and I'm going again tomorrow night SO I decided the best, most easily achieved alternative was a cheeseburger and fries AND A CHOCOLATE SHAKE. My hips are angry at me but they'll get over it. One must give into temptation now and again, mustn't one? Particularly after such a harrowing day. (Imagine me moueing).

The orthotics man came to the office today and the splint has been ordered. I'm sure it will be a lovely addition to my accessories and I will be the envy of all.

And now it is just past 9, I'm totally fried, so I'm going to bed. I will see you in my dreams....

Up to the minute reporting

Had my blood drawn at 9:30AM. Testing the Lithium levels to make sure I'm in the right zone, not toxic. Haha, I AM toxic at times, but it is totally unrelated to the drug.

Will likely hear from Dr Bayat before the end of the week.

Tomorrow I am being fitted for a resting hand splint, to prevent my fingers from curling at night. As I said to Lynne...moving another inch closer. I will take pictures of the claw and its "new dress" once it arrives. Are you simply breathless with anticipation?

That's the news for this hour. Will report again when something interesting develops.

Sunday Check In

Sunday night, getting ready for bed. Have packed my gear for an early, easy run tomorrow morning. Just said goodbye to one of my dearest, oldest friends who was passing through on her way home and stopped to say hello.

I'm twitching with still living nerves and muscles and feel fabulous. I wonder if it's because I've just taken my nightly dose of Lithium? Hahahaha!

C Claire says she's going to create a playlist for me. The first two songs are Atrophy and Lithium. She's such a nut.

Anyway, time for sleep. Sweet dreams, my dears.

Love

So. Got a nice message today. There is history there, with the brothers, but all that notwithstanding my niece loves me and I love her and her support buoys me. Thank you, my darling girl, for all that you are and all that you give. It is a treasure. YOU are a treasure. My life is enriched because you are in it.

Good running

Nothing like a good run to start a day off properly. I'll admit to having walked a few hills that even last year I would have forced myself to run, but the breathing was good and the morning was fine and the beer was smooth and the bagel was delicious. Who could ask for more.

My legs might feel heavy but I'm not going to stop running, because when I CAN'T run anymore I don't want to regret having not run when I still could. Does that make sense? As I said to Lynne, if I was told I only had 85 minutes left to live, I'd make sure to have fun for 85.5 minutes.

I've come to a better place with this situation. I can't change it, I can only do what I can with what's available. Day 5 with Lithium. Day 1 of the rest of my life. Gonna go have some fun.

Love you all so much.

Beautiful girls

I'm such a lucky mother.

Random Info

Clearly I have one major thing on my mind. Been that way since October 26.

Expected Delay in Lithium Efficacy

In treatment of bipolar disorder lithium takes 5 days to create any improvement, and several weeks for maximum effect. For neurodegenerative disease it may take a month for an effect (Chuang and Manji, 2007). Thus it is expected that there will be a month of continued deterioration at the previous rate, followed by a reduced rate of decline.

Side effects experienced by PALS on lithium

As long as lithium levels are carefully monitored and adequate fluid and sodium intake is maintained, lithium should not cause serious problems for most PALS taking the dosage recommended for ALS, which is lower than the dosage used to treat bipolar disorder. Most side effects should also be transient (several days to weeks), experienced during the period of increasing lithium levels and the adjustment of your body to the lithium.

To date, the following are some of the side effects that have been reported by PALS participating in our lithium study. Many of the side effects have been transient, and many PALS have experienced no side effects.

• Increased fasciculations. Please note that a severe increase in fasciculations may be a sign of lithium toxicity and should be checked by a doctor.
• Dry mouth
• Increased saliva
• Skin irritation
• Itchy or painful feet
• Weight gain (oh, great, just what I wanted!!)
  
• Increased fatigue
• Minor headache
• Loose bowel movements
• Loss of appetite and diarrhea. PALS experiencing these problems had relief after discontinuing supplements and increasing fluid and sodium intake. Note that severe loss of appetite and diarrhea is a sign of lithium toxicity and warrants immediate medical attention!
• A few PALS also reported an increase in breathing difficulties. This is not ordinarily a side effect of lithium.

FOOD INTERACTIONS

Food that may decrease your lithium levels are those which make the urine more alkaline. Some of the foods in this category include citrus fruits and juices, watermelon, vegetable juice, mineral water, dandelion greens, papaya, mango, asparagus, onions, parsley, raw spinach, broccoli, and garlic. Note that the acidity of a food may not correlate with the resulting urine acidity. These foods may be eaten while taking lithium – just be aware that if you eat these foods often you may need to take a larger amount of lithium to achieve your desired lithium blood level.

Food that may increase your lithium levels by making your urine more acidic include cranberries, prunes, artificial sweeteners, beans, peanuts, walnuts, pasta, pastries, bread, beef, pork, shell fish, yogurt, cheese, buttermilk, sour cream, gravy, eggs, wine, beer, and soft drinks. If you consume large amounts of these foods you will want to make sure to start with a relatively low initial lithium dose and see if this is enough to achieve desired blood levels.

Looks like I'll be going on the air and water diet.

Here's the page all this info is from, for more comprehensive reading.

And, totally unrelated, I want to add a picture.

Pretty, isn't it? A happy place...

Day 1

Checkin' in

Just a little note to advise I'm taking a little hiatus. Four days until the big L.

Monday late.

this post is being written using voice recognition software. Matt gave it to me to try at home and at the office. Seems to work pretty well.

Just for the record, the feet cramp more than they used to. Happened twice tonight during my run. Sigh.

Off to bed. Sweet dreams.

Really, this ISN'T a complaint...

...but it never stops. Ever. When we talk, when I read, when I drive, when I wake up, it's there. It's always fucking THERE. And I hate it and I hate this stupid disease.

Rain

About a mile away from the end of my run this morning, it started to rain. The raindrops were big and fat and I felt them as they fell on my head and into my hair. When I was finished and was driving home, my hair was dripping.

I love how my face feels when it has been rained on, then dries.

Thank you for the rain this morning and for letting me be part of it.

Fasciculatin'

Okay, I'm not complaining. I'm just observing. I'm noticing INCESSANT TWITCHING and am trying very hard not to focus on the new area of twitch, in my glute and hamstring area. This could be terribly unpleasant because it is a quite LARGE area and, if it twitches as uncontrollably and as violently as my arms do, I may find myself being very embarrassed. It's a visual I can't even imagine.

Clinic Day

All in all, a great day at the clinic.

First met with Debbie the fill-in coordinator (Gwen was out). Not the most upbeat member of today's team; let us know she was burned out. Seemed impatient. I think she may need to look for some other place to coordinate because those of us attending this clinic don't need that kind of attitude. Lynne wrote me a note which she passed to me as if we were in 7th grade. It said "we don't like her, do we?" THAT made me laugh. NB: weight was unchanged (damn, still too fat) and my BP was not good. Normally I'm in the 110/72 range. Today it was 145-150/80-90. This seems to happen only at the clinic. When I go to the regular docs (gyn, gp), my BP is better. Think it's stress?

Then dear Ellen from the ALS Association. She did a check in with all of us. Her visit resulted in a "no needs" notation on my chart. We waited a bit and then headed down to the pulmonologist. I feel very inadequate with this doctor because I never breathe right the first time. Finally did it right and was told it was basically unchanged, but she'd noticed a bit of a wheeze. So now I am on something called Advair, which I'll take on a trial basis for a few weeks. I'm hoping it will make me breathe like an elite athlete and I can start tearing it up again. She also said there was no evidence of any weakness. Hooray!

So, back up to my "room" where I was next visited by the speech therapist and nutritionist. Made my faces and proved I could still drink water and was reminded to eat protein to feed my muscles. I think I can manage that.

The occupational therapist visited and showed me how to stretch my hand without putting too much stress on my joints (I was overdoing it). She gave me a spoon with a BIKE HANDLE sized handle to use. Oh my goodness, it's the weirdest thing. Also gave me a sheet showing different utensils I can order that will make eating easier. I will be like royalty of old, carrying my cutlery around with me from place to place. Instead of it being gold and sterling, however, mine will be some synthetic material with sideways heads. It all looks very Dali-esque. Was also given an rx for a resting hand splint to wear at night to prevent curling. Between the ugly curling claw and the equally ugly orthotic, my vanity is really taking a beating here.

Who was next? Oh, the shrink. Hadn't seen him before. He talked to all of us for a bit then made everyone leave while he talked to me. We discussed (CONTENT REMOVED), and then he left to meet with others. I wasn't crazy about this visit.

Dr Bayat was next. She gave me the grip test (24 right, 30 left), discussed twitching and how when the twitching STOPS it means the nerves are finally dead (so I will never again complain about the twitching). She did the standard strength test and observed more weakness in the right but still nothing in the legs or feet. The left arm and hand were unchanged. She gave me the rx for lithium which I will start taking the week after next. Then weekly check-ins with her for the first several weeks, as well as a series of lab work to be done a week after I begin.

Oh, and this one measurement she does with my hand, the Hoffman test??, had a different result from last time. Seems there was no response where before there was. Ha ha! I must be getting better. :)

Last but not least came the lab tech who took only one little tube of blood. Having been sent to the basement for gallons and gallons (or so it seemed) on my first visit, this was a treat. And speaking of treats, we had a bird's eye view of the popemobile as it headed up Pennsylvania Avenue toward the Papal residence!! Lynne was especially pleased with this, I think.

An interesting observation Dr B made in response to our inquiry: My left arm will likely experience progression similar to the right and, since that seems to be slow, it is to be hoped that the left will progress slowly as well. Anyway, it's still early days, but I am encouraged. As I've pointed out, it's been six months since my dx and I'm still functioning.

After all this, we ate, drove home, and I took a long nap. Got up and ran a great run with Lynne.

I'm so exhausted now, though, it's bedtime. Rilutek, Advair, and a bottle of water, then lights out.

Sweet dreams, dearest ones.

Still at work???

Yep. So much to do and since I'll be out tomorrow, here I am. Gotta make sure my "kids" are taken care of!

Tomorrow. Clinic. Where they measure my grip, my breathing, whether my toes turn up or down, if I can make a face, puff my cheeks, blow a kiss. All these little measurements that tell them how I am progressing. How much closer I am to, well, you know.

But it's six months since the dx. My hand is still working, if not as well. I not only can blow a kiss, I can scowl and smile and laugh and sneer and roll my eyes. Ha ha, my FACE, she is STRONG!

And tomorrow I will talk to Dr Bayat about The Lithium. Please everyone say a prayer or send a good wish that The Lithium will help. Will let me go to basketball games with C Claire and run and stay late at work and shop and travel and live and eat and live some more.

Time to go.

Cool weather

Yep, it is all weather related. This AM was cold, overcast, totally beautiful running weather. As bad as it was yesterday, it was fabulous today.

I love a good, cold run.

And I love my good, cold running, incredible friends.

Another gift.

C Claire and I went to the Wizards game last night. Haven't been to one since February and this was the last game for which we had tickets. Dinner at Bistro D'Oc was fabulous, as usual; C Claire had her escargots and I had Confit de Canard. MMMMMMMMM.

During the game I'd look over now and then at my sweet girl and see her doing her "shows" under her breath. She really wasn't much engaged in the game but was responsive whenever I'd talk to her about a play or someone in the crowd. By the end of the third quarter I decided I was tired (long day, tough run) and she really didn't care. As we walked back to the car I asked her why she'd come with me if she really didn't have much interest in the game.

She told me it was to spend time with me.

My heart was so happy. She's such a good, sweet, loving girl.

Doesn't pay to clean.

I was cleaning out a drawer earlier today and came across two things which made me cry: my mother's obituary and an article about my late boss.

My mom died shortly after her 60th birthday, Bill died just before his 59th. Both so young.

I must be in one of those moods. I can't stop tearing up.

Ugly 9

The heat and humidity were every bit as uncomfortable as I'd expected. Managed to get 9 miles in, but it wasn't pretty. Walked the last 3-4. Poor Lynne. Kept trying to make her go on without me but she insisted it was okay. During the post-run beer, however, we discussed the merits of a moped!

Supposed to be cooler tomorrow. Hope so. Runs like this are discouraging.

Friday Night

It's hot. I hope it rains tomorrow for my run. If it does I may manage to make it up Hospital Hill (unless I just collapse and stay at the hospital). I do not like running in the heat and humidity.

But I do like visitors in the office, particularly if those visitors happen to be Matt's wife and kids. They are such a lovely family, not surprising given who Matt is. Joy is a great mother and they have done so well with their children. Maddie is witty, intelligent, talented and beautiful. JJ is all boy in a walking "squish" body. They play so HAPPILY and I love hearing their squeals. Those of you who have kids or have been around little ones know that sound, when the absolute glee and total delight with their moment of fun can be heard in their voices and laughter. I love their energy and their purity and their sweetness.

Talk about a gift.

Time for bed. Sweet dreams and a good night's rest to you, my dears.

Breathing Water

Ugh and more ugh. Since I was a lazy butt and didn't run yesterday and since my IHop breakfast this morning was canceled, I decided to run before work today. The humidity is back. And the air feels thick and dense and wet.

Oh well. Only six months until October.

Some fun things to look at:


Jen and Miss Stella


Becky near the finish at the 10K


C Claire with our sweet Shadow

Happy weekend to all.

10:47 on Wednesday Night. I should be asleep.

I am treating myself to a beer right now.

C Claire and I met with Kate the Social Worker tonight. It was productive and I think will be a good resource for C Claire, and me. It's necessary at this point for me to compartmentalize a bit--still not a good idea to think too much about why we are there except to provide the outlet for her. I like Kate, and C Claire was chatty and friendly and brilliant. Listening to her with someone else's ears always takes me by surprise. I accept and am accustomed to her elevated use of language but in situations like these I am blown away. She doesn't "dumb down" like so many teenagers do. I love her so much and am so proud of her.

When we got home I made her dinner and also started a dish called biryani. One of the Ladies' Night ladies made it for a pot luck at the office and I was intrigued. Anyway, it is very involved and requires chopping and deboning. Both of these activities require dexterity--and I was clumsy and frustrated. I chopped a nail--thank goodness it wasn't a finger! And thank goodness, too, the nail didn't end up in the veggies! The energy expended, however, was enormous and my arms and hands are not only tired but they are twitching like crazy. Times like this are discouraging because I cannot imagine the twitching is anything but a sign of deterioration and I hate to think I've done anything to worsen the deterioration. My apologies for being redundant.

Deterioration, clumsiness and frustration aside, the biryani is cooking and smells fabulous!

So, it is late, after 10PM. Almost time for the Rilutek. One week until the clinic. And the lithium.

My niece has written and mentioned stem cells as something to look into. I am only superficially aware of what's being done with stem cells as it pertains to ALS but I will most certainly look into it and ask Dr Bayat on Wednesday.

In other news, I had a much needed and much enjoyed run this morning. While running, I was thinking about the faces around me at dinner last night. Have you ever been to a gallery that displays old portraits--portraits from the 16th, 17th and 18th centuries--and noticed the smoothness of the features? That's one of the things I saw last night. Each of these women, present in the 21st century, could have been a model for these portraits. I was conscious of a timelessness in their features. I must sound crazy, but I DO think about stuff like this.

The biryani is done. I hope it tastes okay--we'll find out tomorrow!

Off to bed. Sweet dreams, my dearest ones.

Ladies' Night

Tonight was Ladies' Night at the Ballston Melting Pot. Such a cool place with great fondue at each course: cheese, coq au vin, chocolate! I went with six coworkers, some of the nicest women I know.

We shared a bottle of wine--actually two, one white, one red--and easily agreed on the choices offered. As the fondue forks dipped (and dropped!) food, crossing the table to try each fondue pot, the mood was happy and everyone really seemed to be enjoying themselves. We talked, we laughed, we ate (too much) and had SUCH fun. I looked around at each of these women; looked at their eyes, their expressions, their smiles. Being part of this moment was so incredibly special to me. I try to be aware of the gifts I'm given--well, this was a gift of such magnitude I was filled with a joy I can't easily describe.

Things happen for a reason. And we are all where we are supposed to be when we are where we are. This time, this place, these people, mean so much to me. Maybe Louise is with me now so I can appreciate more the time that is now. I don't know. I'm not going to think too much about it. I'm just going to be glad of it.

Well and Happy

I have today received an email, sending more pictures and a message that hopes I am well and happy.

I am not well, but I'm trying to be happy.

What the fuck?

Please.

To my friend:

I am so full of conflicting emotions. What I am about to say sounds crazy, like I'm arguing both sides, but please bear with me.

I know people feel bad about Louise. I'm not crazy about it. And I know I have to be supportive of my family and friends and sensitive to your feelings about all this.

I don't ask that you be happy about this, but please do not burden me with your pity. I do quite enough of that for myself and it is wasted energy.

Tell me if you are sad and say the things that need to be said. Cry. I can handle it. I'll cry with you. We'll cry until we purge the pain then we'll laugh and go back to that acceptance place. It'll make us stronger knowing we have crossed that rough spot together.

But please don't look at me that "way." It breaks my heart.

The 10K, the Maasai, and The Fluff

I am eagerly awaiting the race photos from today's 10K in Richmond. Becky ran with me--her first 10K! She told me she was going to run back in November, after I delivered "the news." She trained and did really well; we ran negative splits, even while taking walk breaks!

First race since starting back on the Rilutek. Didn't have any breathing issues, yay!

On another running note, I heard the other day on the BBC about a group of Maasai warriors who are running the London Marathon to raise money for clean water for their village. Clean water--what a basic need that we take so much for granted. What a soft life we lead; we have so much we never even would notice is missing. I was humbled.

___________

Update on The Fluff: she is stitchless and coneless. Only 39 more days and she'll be cageless. I miss the baby and can't wait to see her, especially if she's wearing her new little puff sleeved tee shirt. I know, I know, I dote on her. But she IS my grandogter, so I am entitled.

Peeking

I try not to think about it, but I do anyway.

Why he chooses to be distant under these circumstances, I can only guess.

I shouldn't let it bother me, but it does.

BananaMan

I am BananaMan to Beck, the wickistick PF Chang's lunch buddy son of my dear friend, Allison. He and his brother and mother came to have lunch with me today. Allison and I have been friends for EONS it seems, hard to believe given her oh-so-young age. My kids used to think it was odd I had a friend who was so much younger than me. She and I ran my first marathon together. She's something special.

Her baby, sweet cuddly little Ben, is irresistible. Allison was holding him during a little fuss and he was so squishy and soft and adorable and I couldn't stand it--I had to hold him. I never even thought twice when she handed him to me. I managed okay, it's mostly the arm that does the work when I'm holding things, but after a few minutes I realized I was tired. My idiot stupid arm couldn't even hold a three-month old baby. It broke my heart.

On the bright side, I did get to hold the little squish, and I stole a hug from Beck. And I'll hold Ben in my lap the next time.

Arrggh

First, some good news. The social worker called and we have an appointment next Wednesday at 6. C Claire is agreeable. Yay!

Now the arrggh:

The social worker called just after I had gotten off the phone with The Crazy One. I haven't talked to The Crazy One in well over a year but they'd heard about the dx and "had to talk." Nothing is different with TCO. Doesn't hear what you say, talks over you. Makes insensitive generalizations (I am supposed to keep in mind there are others worse off than me. I know that. I don't give a rat's ass. Well, I do, but you know what I mean.) I'd forgotten how angry TCO could make me.

Fortunately the social worker's call helped distract me.

Fifteen minutes until rilutek #2. I promise I will not count every single pill. Talk about tedious!

OH! If you look at my comments (I only have three. Three? I think it's three) you'll see I was contacted by my niece. I was touched and pleased to hear from her. TM, I am sending you love all the way from Virginia.

Sweet dreams, all my loved ones.

And it begins again...

Have taken rilutek the first. Off to bed.

Random Updates

The Car

I don't need it YET, but it is increasingly difficult to turn the key in my little hybrid Civic,which is also a stick shift. I am on the lookout for a used, moderately mileaged Prius or automatic Civic hybrid. The Prius doesn't have a traditional key, and the automatic Civic can be fitted with a remote starter. I have to figure out the $$ because I sure don't need MORE debt, but this is going to become necessary so I may as well suck it up and just do it.

===============================

The House

Is going molasses slow. It seems as though the weekends are overful with commitments and there is SO much to be done it overwhelms me. I wish I could just sell it as is but the market is bad enough--I'd get almost nothing for it. It'll get done, slowly, but again there is the $$ issue. We have to do work little by little.

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The Social Worker

Finally called me back but I couldn't take the call, thank goodness she left me a voice message. I've called HER back and will work quickly to arrange a meeting with her. I think C Claire will benefit and the social worker may be able to suggest some helpful strategies. C Claire is generally okay but, as I've said before, I know this weighs on her.

===============================

The Race

Have had nice messages from people who are interested in running or supporting the race. I've even heard from an incredibly dear friend who wants to sponsor! This emboldened me to reach out to my old law firm to see if they, too, would consider sponsoring. Hey, it never hurts to ask.

===============================

The Dream

I've just purchased a BlackBerry for someone else and am carrying it around in pink tissue in a white canvas bag. After a confusing moment (in the store? don't know) I realize I can't find the bag and am worried. I try to leave the store but, since I'm wearing clunky ROLLER BLADES, I can't make it down the rickety metal steps on to the bustling city street. My arms won't support me on the railings. There are lots of people there but no one helps. Next I am in an informal meeting room where I am supposed to meet with the people at a new job. The woman I'll be working for looks familiar and I realize it is the coordinator of my local ALSA chapter! She and another woman give me a company credit card and tell me they have to ask me the important question. I ask if they need to know if I understand how to budget or something along those lines but they say no, they need to know if I drink black coffee or lattes.

Too ridiculous, right? :)

===============================

Had enough? Yeah, me too. Time for some non-computer time.

Sweet dreams.

No April Fools, but so what!

I cannot stand the stupid, constant twitching! Arrgghh! There, got that out of the way. It is driving me CRAZY but saying it over and over and over again does become tedious, and one does not wish to be tedious.

I was sort of hoping I'd get a message today from someone saying "April Fools! You don't have ALS." Sigh. No luck.

Okay, sorry, sorry, enough of that. On to a much happier topic:

From Merriam-Webster online:
superfluous

One entry found.

Main Entry:

su·per·flu·ous

Pronunciation:

\su̇-ˈpər-flü-əs\

Function:

adjective

Etymology:

Middle English, from Latin superfluus, literally, running over, from superfluere to overflow, from super- + fluere to flow — more at fluid

Date:

15th century

1 a: exceeding what is sufficient or necessary : extra b: not needed : unnecessary
2obsolete : marked by wastefulness : extravagant

I have finally found a job where I am not superfluous. Have I said before how much I love my job? Oh, right, don't want to be tedious...but I have to restate and restate again just how much I love my job. And the people at my wonderful job. I wish I could name each and every one of them but I won't, for a variety of reasons. But I know who they are and they know who they are and they know I love them!

My Lovely Morning

Because I didn't run Sunday or yesterday I decided I would do a nice short run this morning. But I overslept, Kendall wasn't there, and my enthusiasm and motivation were lacking.

Got to the locker room prepared just to walk the treadmill in the gym but, when I was tying my shoes, I double-knotted the laces. This I do only when I run. I took it as an omen.

It was not as cool as I like, but it was misty/rainy. I started slow and went out the Custis Trail. The lamps illuminated the newly-blossoming trees--such a beautiful and pleasing sight. I ran without stopping past the W&OD junction, up to the turn-around I usually take, back to the Bluemont and then on to the office. Somewhere along the way I wondered how I could ever have even considered for a moment not running, not doing this thing I love so much and which is such a part of me. It really is life-affirming for me.

I start taking the Rilutek again today, half dose. Preparing for lithium. My running may change, but I won't let it stop.

Expiration Dates

Yesterday Jenny and I spent a lovely day doing filing at my office. A gargantuan project, one that required her organizational skills and, now, her strength. She was amazing.

I'd worn a sweater over a tank and became quite hot with all the lifting and moving, so off came the sweater. The twitching was SO obvious...I called Jenny over to look at my bicep and she also saw the forearms, the shoulders, the hands. All plural, because it is right and left.

For some reason this made me think of Blade Runner--you know, about the replicants that have a predetermined and relatively short life span. I started thinking about expiration dates. We all have one. We all expect we're going to live a relatively long life. If we are taken early, we don't have time to think about it.

I think about it. I wonder how long I will live after I am functionally disabled. It's so surreal to think about one's own life in this way. It makes me think about how I'm living my life right this minute. Am I making the most of it?

I'm not being gloomy now, I'm actually fairly dispassionate at the moment. I guess because I am still living normally, making plans for races and trips and get togethers with friends. All things considered I've got such a super life. What a lovely gift this perspective is.

I hope all of you who read this can feel the depth and the intensity of my love for each of you. There is no expiration date on that.

Saturday's Half Marathon

Wow. What a great day yesterday. It was cold, a little breezy, sunny but not TOO sunny, some tough uphills but some kind and forgiving downhills...all combined to make a fantastic race. Lynne, Cathy, Kendall and I got the most perfect parking place, right by the armory! We all had good races, Lynne ran a good marathon and the rest of us ran a strong half. Kendall PR'd--she showed those hills who was boss!

I was so exhausted by the time I got home. I took C Claire to have her eyebrows done, took a shower and crawled into bed at 4PM! I got up near midnight just to move around a bit but went right back and got up again at 7. I don't remember ever being in bed that long except during bad bouts of the flu...the race really took it out of me. I had nice dreams about rainy beaches...a very restful sleep.

Not a bad way to spend a Saturday.

Friday

Better days. The daughter is smiling, so her mother is smiling.

Prepping for the half marathon tomorrow. Busy at work. Listening to good music and podcasts. Feeling happy and content and, while the claw is stiff, it managed to button the (probably too-tight) jeans I wore today.

It's a pretty day and a good life and a wonderful place to be.

And later....

By 11:30 the meltdown had lost much of its energy. Too much to detail except for the final moments. Crying, sobbing in the bathroom she finally yelled out, "Do you know what you're doing, Mom? Do you know what you're doing to me?" I'd gotten into bed but was still awake. I called to her to come lie down next to me and we'd talk it out. When she did, she told me that, on the last day of camp, the Terrific Teens sit around and talk. One of the things they discuss is what makes them cry. She said this year she had something new--my disease. She sobbed some more and I held her close, feeling completely helpless. I am powerless to fix this one. My poor baby, the weight of this is so heavy on her. I would give anything, anything at all, to spare her this.

Meltdown

When you are telling yourself to be happy happy happy and not think about The Disease, you take your smiling daughter to the Best Best Buy because, despite the fact it's further away than the normal Best Buy, she is usually successful finding her CDs there and you love her and want her to be happy because it makes you happy. And you need happy wherever you can find it because you've had a not terribly happy day.

So you go. You wait. She finds an odd obscure little CD but says she wants to keep looking. You agree. You sit in front of the big TV that is obscenely expensive and watch college ball. The clock edges closer and closer to 9PM, when the Best Best Buy closes. Your smiling daughter isn't smiling anymore and you discover she can't find the CD she's been looking for for two years. Reasonable people understand that probably means it won't be found at the Best Best Buy or any Best Buy, at least not in your area.

You suggest it be downloaded from iTunes which is a ridiculous suggestion because it's NOT the real thing and is not loud enough.

The rumbling has begun.

So you take the CD she did find, along with the iPod car player you found, to the register. She begins to lose control and hits your hand as you try to get the money to pay Kerstie, the cashier, who looks on with a stunned expression but manages to be friendly and pretend she's not witnessing a 14 year old having a temper tantrum. Merchandise finally paid for you apologize to Kerstie and leave and very unsmiling and yelling daughter leaves with you, loudly voicing her objections.

Once in the car the screaming begins. The shrieking begins. She pulls your right arm despite the reminder the right arm isn't what it used to be. She kicks. Screams. Flails. No words you speak are acknowledged or listened to. So you remain quiet, and take the long way home. Hoping the longer ride will serve as a distraction.

Some small bit of calm is achieved by the time you reach home but not enough. The screams have become quieter wails, the shrieks are gone but replaced by plaintive cries. She refuses to get out of the car.

She's still in the car.

She's stubborn.

I'm tired. I'd better try to get her in the house.

Why disappointed?

What a day.

Jen and Dan were talking to me today and Jen mentioned she'd heard about the race and how cool and exciting it was the crew was doing this. I'm so grateful for the concern and support of "the kids" but today, today the realization that this race is being held because of my fucking terminal illness weighed heavy on me.

I've been mopey today. Not so much in public (except for the tears after the conversation with Jen and Dan) but here. I hate to say or even think some of what is written here but I have these thoughts and it IS helpful--except I know you are reading this and I don't want you to become frustrated and bored and irritated with the repetitive "oh poor me" I often dump into this place.

Wendy and Mike were telling me at Easter they are taking a retirement class. It made me so jealous.

When I consolidated my various retirement vehicles, I felt quite pleased I'd managed to put away what I considered a fairly decent sum. Art (my $$ guy) said my funds would roughly double in seven years and double again seven years after that (generally that is the way it works). He said I'd be able to be comfortable in my retirement. I was looking so forward to moving to NoVa after C Claire went to college, living close enough to bike to work and run the trails. An "active senior."

But now, with forced retirement looming who knows when, as a disabled NOTHING, dependent on a shrinking retirement account (thanks, George W.) and a housing market that doesn't give me much hope for selling my house at any decent price (a necessity, since I must go to a house that is ONE LEVEL for my anticipated WHEELCHAIR), I feel cheated and robbed and intensely disappointed.

Sigh. This mood will pass. Hopefully sooner rather than later. But Louise will still be here. And the timing sucks.

More

I'm also disappointed.

Brave? Nope.

Today I was having a nice conversation with John across the hall. He recently returned from a family vacation to Rome and was telling me all about it. I mentioned it was my hope to take the kids overseas this summer while I was still able to walk, and asked if he'd heard about Louise. I presumed he had, since several of his coworkers know. But he hadn't, he expressed his sadness on my behalf, and told me I was very brave.

I don't think of myself as particularly brave. Like I said earlier, everything is still very normal. Those things I can't do any longer I just don't do, and each day that becomes what is normal. I have said this is the hand I've been dealt, I'm just going to play it.

During the heaven conversation I had with Lynne, she said she didn't know how anyone who didn't have faith could face what I'm facing. I don't know that my faith is all that it should be, either.

I know I go back and forth from melancholy and sadness to Pollyanna-ness and pragmatism. When I'm pragmatic, am I brave? I don't think so. I think I'm just ignoring reality!

There really isn't any point to this ramble. I just started thinking about bravery and how I've managed to fool lots of people. Because, Polly and pragmatism notwithstanding, when I go deep inside me I am scared to death and sad beyond measure.

Polly's back

My family and friends will leave in DROVES after reading all my gloom! I don't know what gets into me that I feel compelled to write such drivel.

Despite my melancholia of yesterday, it was a lovely Easter. The whole family was there (except poor little Stella, who was recovering from her attempt at stitch removal). The birds kept us entertained, everyone had plenty to eat and drink, and Harley modeled her new raincoat. I'm waiting for a picture so I can share the loveliness that is Miss Harley!

My right arm is twitching like mad today. The left arm is relatively quiet and there doesn't seem to be any face twitching going on. Thank heaven (or whatever that place is or isn't, hahaha!).

Several of the posts on Living w/ ALS have discussed lithium. The posters have said they're not having any bad reactions to it although none have mentioned any change in progression. Granted, it's a little early, so I don't guess there's yet much to report. I'm looking forward to my next clinic visit so I can get started!

So, back to normal, looking up instead of down, and grateful for all the good things in my life. Apologies again to everyone for the gloom, and I love you all.

Sorry about that previous post. Been a long day.

And I've had lots on my mind.

When we die, where do we go? For most of my life I've believed there is a better place, a heaven, where our perfect selves live forever.

I have always said I am a Christian. Was baptized a Catholic, spent my teen years as a Southern Baptist. At 14 I was "born again" and believed wholeheartedly all I had to do was turn my problems over to Jesus and he'd take care of me. I rejoined the Catholic church when I got married because my husband was a lifelong Catholic and I wanted to raise our children in one church, one faith.

I did raise my kids in the church. Saw them all through to Confirmation. Maintained a liberal 20th and 21st century relationship with my God. I'm not a good Catholic, much too modern for that, but I go to Mass and try to take away lessons from each one. The Catholic church, like the Southern Baptists, tells us we are all working toward that goal, that perfect afterlife, in Heaven.

But in recent months I've had doubts about that and my faith. I know we are all going to die. I know I am going to die sooner than I'd anticipated. What then? Yesterday Lynne said, during our run, that she believed we do go to that better place. Today, during Easter Mass, it was all about Christ's death and resurrection. But is there really a heaven? At one time I believed it without question.

But I question it now. I question God now. I often think this whole God and heaven thing is a bunch of nonsense and that after we die we just stop. Our bodies just cease to function and then are disposed of in whatever manner we've communicated to those to whom we've entrusted those details.

I look around at Mass and try to see us as an outsider would see us. Very cult like, chanting and singing and lining up to take communion--the body of Christ--up, down, standing, kneeling, crossing ourselves...what is this? Are we all deluded? How can this be real?

All these musings have gotten me nowhere, and lead to this ridiculous rambling. Apologies.

Sorry. I'm melancholy tonight.

I know that before I die I am going to be paralyzed. I will be a burden to my family and friends. My relationships will wither and die like the muscles in my hands and arms. The pain of losing these relationships, knowing that it is an inevitability, breaks my heart.

I think about this and it makes me so sad.

Saturday

This morning was easy...slept in until 8, made some coffee, looked at the paper. I don't get many mornings like this, I'm usually running (no, I am NOT complaining). A morning like this now and again is a treat.

I also spent time this morning paying some bills. This time I had to write three checks--can you believe there are still bills that require actual checks?! Well, there are. My checks are becoming harder and harder to read as it becomes harder and harder to write. I use the fat pen and hold the pen the way that seems to work the best, but my handwriting is so messy. The first few letters are such a struggle and I am so clumsy. I would use my left hand except my left hand likes to write backwards and I don't think my creditors would understand! You and I know it's a sign of genius (she said humbly, haha!) but the Post carrier doesn't care how much of a genius I am--he wants my legible check.

A small success I want to share: I clipped my nail. I had to hold the clipper flat on the table and use my whole hand to push it, but it worked. Admittedly, it slipped several times and was awkward, but it worked. I am blissful in my independence.

Twitching

Today another part of my face is twitching. I am trying not to pay attention to it but any and all twitching has become suspect.

On a happier note, my order of Pickle Sickles has come in. Now, now, you know you want to try a picklesickle...

The Race

My coworkers are unbelievable. Check this out.

This had been in the works for some weeks and they let me know about it on Monday. I am touched beyond measure. I love them so much.

Items.

Item the first:
Yoga last night was tres cool. The instructor told Jenny and me she'd researched ALS and advised me not to do anything where I had to bear weight on my hands and arms. I had decided this several weeks ago! Anyway, class last night seemed to be geared toward legs, core, and stretching. Jenny worked HARD and said she'll not go again without wearing a tank--the short sleeves were too hot! I didn't work quite so hard but enjoyed it nonetheless. It's a special way to spend time with Jen, which is the real reason I go.

Item the second:
Kendall has the racing bug! Prior to the Shamrock Half she declared she wasn't going to do any more races, but yesterday she was perusing the National Half website. She had such a good race in VA Beach it must've changed her mind. I'm all for it! The course isn't flat like Shamrock but she's stronger than she realizes and it'll be fine. A point I meant to make to her: running hills is GREAT for your glutes
.
Nearing the finish at Shamrock. Go Kendall!!

Item the third:
The twitching in the left arm and hand has become fairly constant. As well, I'm seeing signs that the left hand pinky is thinking rebellious thoughts. And I'm trying not to pay too much attention to the twitching I sometimes feel in my lips. Yes, my lips. For now I'm blaming fatigue--how's that for denial?!

Item the fourth:
The retirement account has taken a big hit. I'm very worried about money.

Timing

Brilliantly wise Tom came up with a great suggestion: call our local hospice. I did, and they have a counselor who works with kids; they also have a twice-monthly support group. I think this will be a good starting point for C Claire. The woman on the phone was friendly and helpful and informative. I'm to hear back from the counselor tomorrow.

Everything was fine until she said to make sure I knew I could come to them for my own needs. All of a sudden reality choked me--I managed to say thank you and I'd look forward to hearing from the counselor.

When I got off the phone I couldn't help it, sadness covered me up. I don't HAVE needs, not yet. I can compartmentalize and seek support for C Claire and not look down that road, even though I'm well aware that road is there. The woman's words, meant ever so kindly, were a punch in the stomach. The twitching felt worse, the weakness was more pronounced--the veneer was destroyed and a bright light shined on THE CLAW.

Luckily I got a friendly phone call. I shared what had happened and came close to losing it again, but was able to move past it...I don't want to be a gloomy old thing and bring others down. My friend, supportive and kind and fabulous, called at the right moment. Talk about perfect timing!

So. We'll see what happens tomorrow.

C Claire

I worry about her. Of all the girls, she is the one at home and is the one who is most exposed to what's going on.

She's heard the conversations. She's heard the fights. She's seen the struggles. Each night she runs to the door to help me carry. She opens the water bottles. She opens the envelopes. She bears all the little itty bitty tiny things which, when combined, might be far too heavy for her little shoulders.

Reached out to Tom C to see if he might know someone who knows someone who can see C Claire, talk to her.

I wish I could spare her--and everyone--this stupid ordeal.

A note to the crew

When I say crew, I mean the assembly of delightful, brilliant, fabulous people with whom I spend my days at work.

The road taken to arrive at this place in my life has been full of twists and turns. The bumps in the road were worth it. You are some of the most amazing people I have ever had the good fortune to know.

I'll never be able to thank you enough for the gifts you give.

The Day After

I am sore and tired but feel really great. I have to admit I was very worried about my hand yesterday, after the bike ride, but the stinging sharp pain is gone. Lesson learned: I need about a million layers of cushioning on the handlebars if I'm going to ride my bike for very long.

What was pleasing to me was the strength I still have in my legs. Running a half and then getting right on the bike to go find Lynne is not an everyday activity, but my legs did very well. I calculate I rode about 21 miles after running the half; 21 miles on the bike is equivalent to seven miles of running. So basically I ran 20 miles yesterday. I'm ignoring the twitching that is going on today.

Lynne did well. Overcoming a variety of negatives (wind, concrete, etc.) mid race, she picked it up at mile 18 and finished like a champ. She's such a machine!

This one's for Kendall

We had a super race. 2:25. A fabulous day.

Love you, Kendall. :)

What does THIS mean, I wonder?

More strange dreams. My recollection of last night's is disjointed, but what I do remember is this:

I'm at a lunch counter with lots of people, mostly people I know. I don't have enough money to pay for my sandwich and and am looking for any odd cash when all of a sudden I find my credit card and tell the waitress to put everyone's lunch on my card. The bill is paid and we all leave, but everyone leaves behind odds and ends, which I end up collecting. There are so many things I have a hard time carrying it all until Adam's father, Jeff, comes to my aid. From there we get into a car (the group is smaller now, but Adam's parents are still with me) and we drive up a hill to another store and discuss buying a bottle of wine, which we do not.

Continuing along in the car (now with another friend, Colleen), we drive through a neighborhood where I often run but stop at a huge white house with bright turquoise shutters and doors. Walking along the side of the house I see through the windows a ton of people--adults and children--all busy living life.

Then I find myself in another house, a very small house. There is a repairman there and I ask him to fix the garage. Immediately the garage becomes a room, a sunroom I guess, which I can make larger or smaller with the push of a button. When the button is pushed the floor creaks and moans and the room is transformed. Preferring the smaller room, I push the button and, while the house is being driven down the highway, it decreases in size. I am very worried about the safety of this maneuver but nothing happens. When we stop I discover the driveway has regularly spaced cracks which, when folded or unfolded, cause the room to change size.

More people arrive, young people who are either my friends or my daughters' friends, all dressed in winter caps and coats, they are all smiling and happy and so very kind. We are back at the white house which is still full of people. I go into the back of the house where there is pool (indoors) and I sit by the water, not a stitch on, and worry for a moment people will see me. Another room just beyond the pool is locked but has a window in the door. Inside there is a pedestal with an object, like a smallish, glowing, amber light, sitting on top of it. I'm told the only person who can go into this room is the person with the code. I'm surprised to realize I have the code but I don't go in because I don't have any clothes on and I don't want to be seen.

I feel like there's more but I don't remember.

Anyway, it's Saturday morning. I checked my email and saw the regular message from "Living with ALS." This is a yahoo message board I subscribed to. At first I tried to read everything but became discouraged. I know I need to know about cough and suction machines and wheelchairs and feeding tubes and all the rest but I'm not ready yet. Now I scan the topics and only read what's interesting--which isn't much.

Sun's out, Shamrock road trip is imminent, going to see Becky and John's new house--think it'll be a good weekend. Unless I end up at a house with a pool and don't have any clothes.

Enough Already.

Driving home tonight I caught sight of my hand resting in my lap. The fingers are curled, especially the two non-conformists. Such an awful looking claw. So are you totally BORED with the whole claw thing? I AM. I AM SICK AND TIRED OF THIS. I WANT IT TO GO AWAY SO I CAN TALK ABOUT OTHER THINGS.

Like:

• The Shamrock half marathon is Sunday. Kendall is recovering from the flu so we tried a new ratio this morning: 5:2. What is noteworthy is that we covered the same distance in about the same time as when we do 8:1. I think Kendall will have a good race and I am looking forward to cheering Lynne on as she completes her 27th marathon. No, no envy, at least not today. We'll see how I feel Sunday. Anyway, the 5:2 run this morning was delightful. I was disappointed to get back to the office.

• Matt sent me a great link today. If you have time (approx 20 minutes) it's worth a look.

• Can't go to Becky's game (homework) but the Terps (sans the "w" for now) are playing so I will watch. Hope they don't screw it up.

I think these are much more interesting topics.

PB and Pickle

Don't gag. Peanut butter and pickle sandwiches are manna from heaven and one of my favorite treats. I'm eating one now and loving it! Tomorrow morning's run will burn most of it off--I hope!

I had to do this post separately from the one just before because one simply cannot talk about one's mother and peanut butter and pickles in the same breath. Haha! As contemplative and serious as was my previous entry, this one is less so.

I was able to UNzip my skirt tonight. C Claire is happy and chatty and sweet as can be. Jenny and the Fluff are doing well. Becky's volleyball team is #1 and we are going to the game tomorrow.

I am very happy. It was a beautiful day and evening.

Much, much love to all.

Mom

Today I was talking to my sister about last Easter (the Easter of the SPEW) and we talked about our mother. It's been 12 years--12! I told Wendy that this morning I'd seen Mom, as I always do, in the mirror. After Mom died I had several dreams that she was with me, but I only saw her in the mirror. Always the mirror. At a hotel in a third-world resort, in the rearview of a nearby car, it didn't matter where, it was always a mirror. I know this for what it is: my own face resembles my mother's and there are times her features are clearly evident, whether it's the set of my mouth or the tilt of my head or the look in my eye.

Most of you know my mother died after the liver she'd received in a transplant developed cancer. Mom had a choice: take the drug that kept her liver from being rejected but which would permit the cancer to grow; or stop the drug, cease the cancer's growth, and allow the liver to fail. Her choice was the latter, the least painful.

My mother endured much in her life. Her death was quiet and befitted a woman of her strength. I wonder if she knows what's happening and is sending me some of that strength when she shows up in my mirror.

Normal, except...

Everything is so normal. It's so NORMAL. Getting up, getting ready for work, eating breakfast, talking to Mike (who has the 6-2 shift this week)....except this morning I couldn't turn on my bedside lamp, and Kendall had to zip my skirt for me.

Everything is normal except for those things.

Here's somewhere else I'd like to be now...

Ruminatin'

Lunchtime and a moment of reflection.

As I sit here, just off the phone doing oh-so-important work for the company and our employees, I can't imagine not doing this and the other things I love so much. My life is really so incredible; I love and am loved, the cold air feels good on my face when I run, my egg drop soup (right now) and food (in general!!) tastes so good, I'm listening to BBC podcasts. This is just a short list of things that make me appreciate where I am in this life.

Then my fingers start their stupid dance and my arms (yes, armS) twitch and twitch and twitch, and I recall I am not left handed no matter how I am eating my soup, and I remember Louise is not far away. As I've said before, I have a very hard time reconciling who I am with what Louise portends.

So I ignore her as much as I can. Stupid bitch.

Where I'd like to be right now....

Loving my Monday

When the alarm went off this morning at 4:15 and my body revolted, thinking it was 3:15, I decided to stay in bed another 30 minutes. Excellent decision. I had a good workout at the gym and then two HUGE successes: I buttoned the left sleeve of my blouse AND I managed to squeeze into some pantyhose.

Starting off to be a super wonderful day!

I've also given some thoughts to yesterday's dream. The pointy toed skates are obviously mine because I am the pointy toed shoe queen. Skating=rolling=ease of movement, agility, freedom. Dave L and Kevin represent the running (Dave) and my youth (Kevin). Still working on the table and what THAT means! Maybe it's representative of a plateau? Who knows. I welcome any and all interpretations.

And, finally, more reasons Sunday was a good day: Lynne, Thull, Jennifer, Jannette and several other friends placed in the race!

Blahg, blahg, blahg.

Blog, blog, blog. What a blogger I've become. Even the most trivial, mundane events in my life must now be recorded. I've never journaled before....well, not since Nancy Brown and I tried to be Harriet the Spy in 5th grade (and we got in BIG trouble for that). So...to proceed.

I had another odd dream last night. I was at work, manning the door lock from my desk. The guy over at IJ across the hall asked if I would manage their buzzer too since they'd all be out of the office. I agreed. Their side of the building, having never been explored, was tempting so I walked over and found myself at the top of a staircase. I went down, but very carefully as the stairs were irregular and very sketchy. Several times I was unsure of my footing. Reaching the bottom, I found myself at the entrance to a long corridor. It was HORRIBLE, with rats running all around, and it smelled bad. I turned and went back up the stairs, again VERY carefully since climbing was difficult with the bad staircase. I reached the elevator lobby separating TIS from IJ and a friend, Dave L, was roller skating around in very pointy toed roller skates. He was very agile and competent on the skates and was able to roll underneath a nearby table. Dave turned into an old friend from high school (Kevin, they are alike in their features). That's all I remember.

Any thoughts as to what it all means? I'm thinking the stairs may represent the you-know-what. The rest of it I don't understand and I honestly haven't spent much time thinking about it.

To continue: I had a fabulous visit with Ken and JR. They are such good friends and I love them so much. They shared their books on Rome and Italy with me to help plan my European Adventure with the girls.

Beyond that, it's been a quiet, happy day. The pedi looks lovely if I do say so myself and I am ready to wiggle my toes in public.

As close as I was to unhappy yesterday, I am commensurately happy today. How nice to be able to enjoy the little treasures we are given each day.

What makes this a good Sunday

1. UNC beat Duke.
2. The sun is out and it's cold.
3. Ran the 8K this morning in under 50 minutes.
4. Didn't have to run after the race!
5. Ate a delicious bagel.
6. Am getting a pedicure.
7. Am visiting Kenny and JR.

And it's only 10:30. Imagine all the other good things that will happen today!

Beer and Cake and UNC and Duke

Just back from Lynne's big do at her home. Considering I had the house to myself, it is a real testament to our friendship that I would go out under these circumstances! But she is such a great friend and her family is so welcoming and friendly I couldn't help myself. In fact, after the afternoon I had, it was very helpful.

My afternoon wasn't bad--but it bordered on depressing. I came home from my run (which was excellent, by the way) and was determined to get some things done that I'd been putting off. The family headed to Richmond and I settled in to balance my checkbook, look through some papers, etc. Some of the papers I had to go through were medical bills....I've racked up so much already in 2008. (Thank goodness for our health insurance. I don't know what people do who don't have it.) My hands were cold and, consequently, my right hand was even more clumsy than usual. The fingers spasm so much. They hit keys when I don't mean them to, they don't hit keys when I do. I'm constantly backspacing to make corrections.

I had added some links to this blog and decided to look for some others having to do with ALS. Big mistake. The two I added today (Arms and Legs) are gentle--some others I looked at were not. I may add them at some point but they are too much now. Maybe not too much for my dear readers, but too much for me. It was like going to the support group last month--a glaring preview of what's to come.

The hour having come to go to Lynne's, I decided enough was enough. I left, but the images I'd seen and the clumsiness of my cold right hand remained and I was feeling not quite my usual perky self. What was worse, I couldn't turn the key in the car. I tried a couple times but ended up having to use my left hand. Tears of frustration welled up in my eyes and for a moment I was full into the beginnings of a pity party.

Times like this I want so much to cry and have someone to talk to but I am very reluctant to burden anyone with this gloom. Everyone has their normal, happy lives and to look at this is ugly and unhappy. We are all so helpless against this stupid disease, it's not fair of me to throw this in people's faces.

I drove to Lynne's and listened to Amy Winehouse as loud as I could. Pushed the images out of my head. Put a glove on my right hand. By the time I got to Lynne's I was almost back to perky. Her son Josh met me in the driveway and offered to carry in my contribution of beer and cake (how's that for a combination?) and, because he's such a sweet kid and rather a favorite of mine, my mood lifted. Entered the house and got a nice hug from newly coiffed Miss SJ. The smile on my face was genuine--here was a good distraction! Lots of kids and friends and food and, of course, beer. The perfect balm.

And now, UNC is playing Duke. Time to go yell at the TV.

I closed my eyes tonight, during a peaceful moment. I was right on the edge of sleep and gave into the drowsiness.

I dreamt I jumped into a pool and went all the way down to the bottom, planting myself somehow. Inhaling deeply my lungs filled with water.

As I came out of this little doze, I tried to imagine how it would feel to breathe in water. I couldn't, really. But it scared me to think of it. I didn't feel so peaceful after I was fully awake.

A Poem For Mom

I really haven't written much since I studied literature in college, but last night at yoga, mom and I experienced a nice little moment of eye contact. Wouldn't you know it inspired the living daylights outta me! This one's for you, Mama, wrote it with throbbing arms while sitting on my throbbing behind after class :)

*Teehee* notice the enjambment (word of the day)



She stretches,
holds a pose.
Daughter breathing
loudly beside her...
She goes as far as she can.
Her muscles are not
as they once were.
Body heat rises
as the music
and the breathing continue.
Filling all the body,
pushed out and sent
to where it will be used best.
They make blurry eye contact
in deep relaxation
and the moisture beneath
the eye comes from the heart.

Now.

Mid 30's this morning--perfect for a run. I was tired but had promised myself I would do the 6.5 mile course this AM. Several times I almost talked myself out of it, or told myself I would shave off part or take the shorter route but, ultimately, I ran the whole course. What a gift--my breathing was strong, my pace was good, the hills weren't any fun but I didn't walk a single one. It was one of the best runs I've had in weeks.

And I ran the course in 61 minutes. Under a 10 minute pace. One of my dear friends, after being told this, laughed out loud. Reminded me of my assertion that I wasn't going to worry about time anymore...okay, guilty! I guess there's still some of that old competitiveness still flowing. Ha!

One thing I need to remember is that, diagnosis notwithstanding, I am a runner. It's not just what I do, it's who I am. I can't give in to the dark thoughts that pop up when I look down the road. It's all about now. Now is FABULOUS!

First, Germany

Oh, TYMD. Bought the tickets to Germany and have started the ball rolling. Hoping to tour German castles; want to visit Rome and the Vatican; MUST stop in Paris for dinner at my favorite restaurant; then possibly Strasbourg on the way back to Frankfurt. What an adventure we're going to have!

Becky's been buying dresses. Jenny says she wants a pre-trip pedi (so do I)! Cecilia gave me a sweet smile when I told her the plans were starting to take shape.

Deepest gratitude to my generous anonymous benefactor.

Smilin'

Today I acknowledge more weakness in my right hand. I can't touch my thumb to my pinky as I used to; this used to be my benchmark. When I try my thumb cramps for a long time, it's even a bit painful.

My right wrist is very thin, to the point where my fingers meet and then some when I circle the wrist.

My ring finger is separating from the others more than before.

I stood at the elevator today on my way to some little task and thought how nice it was to be busy, to be distracted...when I was hit with a gigantic, sad truth. Despite the distractions, the disease is encroaching. I'm trying so hard to smile in the face of it but today I had a tough time. I broke my rule and looked forward, down the road. I wish I hadn't. Denial is a much better state of existence.

April and the next clinic visit are only 5 or 6 weeks away. Please oh please let the lithium prove beneficial. I'm not ready for this.

A note to my loved ones who read this: I apologize. I'm trying very hard not to drag you down into this place. The enormity of what is happening is overwhelming to me sometimes, it scares me so much. I'm sorry you are going through it, too.

Time to run. Thank God.

Eight Minutes

I think it's time I admit defeat. This morning it took me eight minutes to put on my stupid pantyhose. That doesn't include the time spent with the previous pair, only to discover a run.

By the time I was done I was sweating. I certainly earned the bagel I had for breakfast.

Sunday visitors

Little Miss Stella with mama Jen.


Happy Harley the pillow with Becky.


More of the fashion queen Miss Stella with the other fashion queen C Claire.

Worth a smile or two, yes? Yes.

Enlightenment of the Day

I chatted tonight with a friend from one of my old jobs. He calls every now and again to see how things are going with the new job, and to gossip about the people from the old job! He, like most people I know, is aware of my dumb diagnosis.

What I find interesting is how many of my friends will inquire about how things are going, but when I tell them they don't seem to be listening. I'll get a pat response like "well, we all do what we can," or "hang in there, it'll get better," or "it'll be fine." Maybe they do listen but they don't know what to say, perhaps they don't understand that it likely won't get better; that it isn't fine. I don't fault them for not knowing what to say or for their lack of understanding but these vague and inattentive responses leave me feeling sort of frustrated. I mostly feel like they ask to be polite but aren't particularly interested in the answer. That's okay, too, but I wish they just wouldn't ask. It's like being blown off...if that makes any sense.

It makes me wonder how many times I've been on the other end of a conversation and have behaved similarly. It shames me to think I might have unintentionally hurt anyone's feelings with a casual attitude or inability to say the right thing. Perhaps I'm being given an opportunity to improve in that regard.

Confuzement

Don't you love that word? I can't take any credit for it, the credit goes to Loretta the Psychic who gave me a reading while I was in Baltimore this weekend. Apparently I am full of confuzement.

When I got home today I was greeted with some sad news. Shadow died yesterday, apparently at the hands of a stray dog. In our driveway. The tears are hovering in my throat, making it ache. I hate that he died in a way that wasn't calm and peaceful.

Cecilia said she cried hard--not surprising since she "connects" with animals in a way she doesn't with people.

Oh my poor little sweet cat.