THE ODDS (Debbie Does ALS)


6.30.2008

Back to earth

My delightful niece sent me an email with this link, and I had to share. It made me very happy to watch it. I hope you feel the same.

The first day back in the office was very pleasant. It's really become a home for me, and it feels good to be there.

The dumb old blood test revealed another .39 so will have ANOTHER test done this week and, if it's still low, we may have to change the dosage again. I wonder what changes I can make to my diet that will improve the situation. I'll discuss that with Dr B before making any dosage adjustments.

I have an appointment with the pulmonologist tomorrow morning. While I was gone I got a stupid cold and some of it went to my chest. Let's all hope my FVC is still nice and high!

Time for meds and bed. Sweet dreams, my dear ones.

6.29.2008

Bucket List Item #1 and 2

While fulfilling item #1, was presented with an opportunity.

Item #2:
video

Home safe. Love to all.

6.17.2008

A bientot

Time for a much needed hiatus. Will return in early July, perhaps before if I can find a computer.

All my love.

Thoughts during a run...

Wow. Was in bed before 9. C Claire woke me at 9:58 so I could take my meds, but I didn't get up until 10:18. Then right back to bed until the alarm went off at 4AM. I fought and fought--didn't want to get up to run and had almost convinced myself that bed was the better option until I remembered my big fat butt and that I wouldn't be able to run again until JULY. So I hauled the aforementioned big fat butt out of bed, gathered my gear and headed out at 4:20AM.

I'm glad I did. Today's distance was 6.5 miles, done in 63 minutes (slower than the last time I ran this course, but that day I hit all the lights the right way).

Things I thought about during my run:
  • How much I wished it was cold because the humidity was awful.
  • How glad I am I'm running now, and I wonder if I'll still be running when it gets colder.
  • How much certain people mean to me and how grateful I am to have such wonderful people in my life.
  • How glad I am I performed a "cleansing" on my cell phone by eliminating contacts who represent only negative energy.
  • How I am happy I finally can get past the "why" and "what's next" and just enjoy the "now."
  • How I am also happy I can finally get past the disappointment of "what might have been" and, again, just enjoy the "what is".
I am very glad I got out of bed. Hahaha! So is my big fat butt!

6.16.2008

More of the same

Again tonight, driving home, so very tired. I was on the HOV so didn't have any exit options. Instead I called my sister, who perked me up GREATLY. I finally let her go live her life and I tooled on down the road...all was well for a time but then I started the whole droopy thing again. The next victim was Becky who, bless her heart, talked and talked and did me a world of good.

C Claire is napping, the house is quiet. I'm going to go pack for tomorrow's run and go to bed.

Pleasant dreams.

6.15.2008

Runner Girls

Nice start to beautiful Sunday: ran approximately eight miles this morning and felt great. I hope I don't become tedious with all this "great run, felt great" stuff, but I am (and have always been) grateful for the incredible feeling that comes from running, no matter the distance. And I'm going to savor every last drop of sweat and stink that goes along with it.

I ran behind Lynne, Cathy, and Tam this morning. I watched them run, talk, drink water, look around at our surroundings, and I was struck with how important these women are to me. Different people are put in our lives at various times--so we can help each other, rejoice in each other, love each other--how lucky am I to have such wonderful people in my life.

Yeah, I guess I'm all introspective and grateful today. Can't be helped, it's something that grows inside me and sometimes it just pours right out into this blog and you poor people have to endure all the mushygushy.

Well, the aforementioned stink is starting to hurt my nose so it's time for a shower. Here ends the mush.

Love you.

6.14.2008

Happy Happy Happy


Ran this morning. It was hot, no doubt about it. I was actually apprehensive since I'd hardly run at all this week (only Wednesday) and OF COURSE I was sure I couldn't run anymore. Admittedly I was slower--Lynne even commented on it--but that's the way it is now. Heat=slow. All that aside, I could have kept running beyond the hour and a half. I'm rather encouraged.

Don't you just LOVE this photo? Lynne got this at her farewell bash, signed by her staff and other coworkers. I love the message. Great philosophy, yes?

Hope everyone has a great super fabulous weekend and, to any of my cherished readers who are fathers, Happy Happy Happy Father's Day.

6.13.2008

Peace

I have decided I rather like tonic water. Now that I am accustomed to the taste, and because it seems to be fabulously effective! Just in case I find myself without a lovely little bottle of Schweppes, however, I also picked up some tablets at Target.

I have had two peaceful, restful, crampless nights. What a gift.

Oh. And who knows if this is even related. I have not been hoarse for three days. No matter, I'll take it.

Sweet dreams my darlings.

6.12.2008

Little Green Men


This is my profile page from PLM. See my little yellow arms? There are not many little green men with yellow arms that I've been able to find. Most have yellow heads and/or legs, too. Or chests. And many are orange. Several are red.

Cecilia and I are at the Wingate Inn tonight as a weakened tree fell in our backyard and hit a power line. I'm tired, so am going to bed.

Love,

Me

Less horrible with lime juice...

Was it the hydration? The stretching? The quinine (which is FOUL, btw)? I don't know, but I had a restful sleep. I'm sure the tonic water will grow on me, but it was rather a shock last night. It occurred to me that, at age 49, I have never had tonic water before. I know why.

6.11.2008

Stout: me and the drink

I've gotten feedback! Everyone has been so good about sharing their thoughts on which eyeliner they like, and I can't tell you how pleased I am. I've since discovered there is a permanent makeup place in No. VA, and it's on the list. Thank you, faithful friends!

What is no longer being considered, however, is this:


Because no one wants to ever EVER look like THIS:


I do have some limits.

Tonight I am enjoying a nice little ale, Young's Double Chocolate Stout by name. A gift from dear Jess the day of the 10K. Thank you, Jess. It's quite dark and very smooth.


Yes, quite a lot of pictures. Presentations are always more interesting when there are visuals.

I have two bottles of tonic water in the refrigerator and will drink the better part of one before bed. My legs and feet are so unhappy, I hope it helps. My idiot arm spasmed again tonight, and the pain was pretty awful. This really fucking SUCKS.

Hoarseness update: I determined today that it is not constant, but it is regular. Thought it might be related to running but it seems to come and go randomly. I do note that when I've gone a period of time without talking, it improves. Sometimes I am hoarse in the morning, sometimes in the afternoon/evening. And since it has been "present" since May 7, I should probably acknowledge it's part of what this is. Again, this fucking sucks.

On a delightful note, had a super fabulous lovely afternoon. Wish every day could be like this.

XOXOXOX love love love to you my dearlings (yes, dearlings).

Time for Quinine

I woke up three or four times last night because the pain caused by cramps in my feet and calves was so bad. Wonder why this is happening so much now--perhaps because I hadn't run since Saturday? I ran this morning (5.5) and had a cramp as I crossed George Mason, then several more in the locker room. I do not like this and I want it to stop. Now.

6.10.2008

Looking for your recommendations

The sneeze (cramp) finally came, today, while I was having a serious conversation at Starbucks with Kendall and Dan. My elbow was resting on the table, my hand was in the air. All of a sudden I felt a searing zing in my arm, so painful it made me cry out. My ring and pinky fingers have been hyperactive ever since. And my arm is tight and unhappy.

I cannot any longer hold a coffee cup with my right hand. And I really need to think seriously about the new car, not that there will be a hybrid available anywhere with gas prices topping $4/gal. I'm feeling a little overwhelmed.

I read some forum posts tonight and came across one offering helpful tricks and tips for when one loses hand function. Some tips I am very seriously considering:
  1. Getting a bidet
  2. Getting a hysterectomy
  3. Getting eyeliner tattooed on my eyes


I'm sure you are very pleased I only added the one image, no one needs a visual of items one and two.

So, faithful readers, which number eyeliner tattoo do you recommend? There is nothing the least bit Amy Winehouse-ish here, which is hugely disappointing!

6.09.2008

Never Brag on Yourself

So I was all full of myself and going on about my slow progression and isn't it just great it's still only confined to my hand and arm and blah blah blah I'm so fabulous. I told Mike (PT) that since our last session I hadn't cramped in my forearm or bicep and oh life is so good, hooray hooray, I must be all better. Well. There's hubris for you. LOL, all night long, no matter what I've been doing, my rebellious little pinky has decided to Riverdance. I can't imagine what has gotten into the little digit, but it's just moving and twitching and having its own little party. And the stupid forearm is in cramp potential state--can you picture what I mean by that? It's like when you are just about to sneeze--you know it's coming you just don't know when. That's what the CPS forearm is like.

I met a PALS on the PLM site who lives near the office. His little icon is all red (severe arms, chest, legs) except for his head (orange). I'm considering visiting. I got his number and will call his wife to arrange a visit. I know with each new relationship I develop I run the risk of losing the person, but don't we all no matter what?

Just so you know, my little icon is all green (nothing in my head, chest or legs, and your jokes about nothing in my head do NOT need to be voiced, thank you kindly) except for my arms, which are yellow (mild). They don't have the option of isolating one arm from another, so it shows "arms" instead of "right arm." I can deal with that since they are only yellow and the rest of me is green.

I do believe it's time to go to bed. I hope the rebellious one quiets down.

OH. One more item before I go. For a time my dreams had gone away. I mean, I'm sure I had them but they were not remembered. In the last several days I've had my normal (??) vivid, abstract, totally random dreams. Last night's involved trudging through the snow, following a clear, trail-like track, while wearing ballet slippers and blue socks. I was very disturbed about the blue socks.

Okay, that'll give you something to ponder. Good night, sweet dreams, and all my love.

6.08.2008

Annandale Again

Wendy, Becky and I met at the oh-so-fine Foxfire Grill in Annandale. We drank mimosas, ate eggs benedict, omelets and bacon, drank more mimosas, spilled a few drinks, tackled DESSERT, then headed over to The Support Group.

We were the second to arrive. Dick was waiting in the lobby and greeted us--I knew he looked familiar but I couldn't remember his name. Luckily Ellen arrived and told me who he was. I thought it might have been Tony but learned that Tony is fading. Also learned that another man, who I'd actually seen at my last clinic, recently died. So Kevin, Rusty, and soon Tony. I wonder if one ever becomes inured to this. I wonder how Ellen deals with it.

The meeting was a good one: Dick's son and daughter-in-law brought their Polish sheepdog, called Panda because of his coloring. Frank and Sharon (Sharon is the PALS) brought their granddaughter Abbey. Deb and Pat (PALS) were there. And so was I, with my sister and my daughter. A smaller group than last time. There was conversation about wheelchairs, bi-paps, feeding tubes, lithium, pramipexole, falling, clinics, etc. It was a little easier for me for a variety of reasons. I've had more time to adjust if not quite accept. Plus, and this is very noteworthy, MY HAND AND ARM ARE STILL MY ONLY ISSUES. I told Ellen I'd kicked Louise out and she thought that was great.

The next session is in July, on the day I am to take C Claire to camp. I guess I'll go again in August.

6.07.2008

Baby Steps

The girls came home today and helped clean (translated: empty) the dormitory. Almost everything is gone. Boxes were gone through. There have been two drops at the dump and one MAJOR delivery to Goodwill. Jenny and Becky each have a box or two going home. They are all three exceptional girls and really worked hard. Jenny's beau, Damon, was also a HUGE help.

The sodden carpet is gone from the family room. The back room and the dorm still need to undergo this much needed operation, but the worst of it is done.

I think I will begin photographing items to put on ebay, to list when I return from vacation.

Right now I need to find someone who can fix the leaky basement.

Kevin

Not sure of the date, but think it was on or around May 29. An ALS patient of 11 or so years, also right arm onset, and a wealth of information and encouragement, despite the fact he "typed" with his eyes.

The news of his death hit me hard.

I love you. Just saying it as often as I can. I do. I love you.

6.06.2008

Aaaaahhhhh

I love PT. I love how my neck feels, how my shoulder feels, how restorative the whole session is. I love how Mike opens up my claw. I wish I could go every day.

6.05.2008

Waxing Poetic

These violent delights have violent ends
And in their triumph die, like fire and powder,
Which as they kiss consume. The sweetest honey
Is loathsome in his own deliciousness
And in the taste confounds the appetite.
Therefore love moderately; long love doth so;
Too swift arrives as tardy as too slow.

This applies to so many things; life in general. There were some rough spots today and I had a billion different thoughts going through my old muddled head. For whatever reason I started thinking about when we'd take C Claire to the carousel at the mall. She loved it and could ride it over and over and over again. It was shattering to her when we had to go home and the tantrums were very unpleasant. Of course, this was exacerbated by the Aspergers, but the disappointment a child feels when taken from a happy time is profound.

I love my carousel ride, too. Now more than ever.

Point Three Nine

My most recent labs revealed a blood lithium level (lithium blood level?) of .39, under the .4 desired. Effective today I take 300mg each morning and evening, an increase of 150mg a day.

When I was taking my meds last night I paid particular attention because, on occasion, my tongue gets numb and I wanted to figure out which med caused that. So I inhaled the Advair, nothing. I took the Rilutek. I waited and nothing. Then I took my Lithium, there was nothing there either. So no tongue numbness last night. Mystery unsolved.

But while I was waiting I thought to myself, "I am taking Rilutek." There's only one reason people take Rilutek. All my denial and good attitude and otherwise healthy constitution notwithstanding, I take Rilutek. It made me stop for a minute and wonder at the absurdity of this condition I find myself in.

Hoarseness update: comes and goes. But comes frequently. Which sucks.

Oh well. Not gonna worry about it. Not there yet, right?

6.03.2008

Fatigue

It's raining and I'm supposed to meet Lynne for a run. Thank heaven for the rain.

I'm very, very tired. While driving home I got very drowsy, to the point I'd start with the scary realization I had just missed falling asleep! When I reached the exit for Courthouse, two exits before home, I pulled off. I knew I wouldn't make it the next 7 miles, so I went to the commuter lot and parked in the back. The next thing I knew I heard voices and the sounds of cars starting and doors closing. I'd slept for a half an hour. It's better now, but I'm going to bed as soon as possible tonight.

So sleepy....

6.01.2008

Sunday Miscellany

I'm going to guess the aggregate mileage for this weekend's runs was about 17. Nine and change yesterday, about eight today. The heat, humidity and hills were challenging but didn't overpower me. Running this summer will probably be as tough as it's ever been, but that's okay. New rules are in place and a new objective has been set. I'll do New York, even if I have to do 3/2's. I can do anything for three minutes, right? And when a hill is too much, it gets walked. No pressure. Certainly won't be one of my fastest marathons, but I intend to finish it even if I have to crawl.

Saw Sex and the City last night, after a fabulous dinner with Jen. What a chick flick! And such a fairy tale...no one REALLY lives like that. Sigh. Nope, no one lives like that. So, time to go pay some bills and do more work around the house.

Hugs, my darlings!

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