Jenny came up with a word to describe being flexible with one's expecations: flexpectations. I think she's delightfully clever.
Have you ever eaten a soft boiled egg? Do you like them? When I was a kid my Aunt Bette used to make them for us. I remember burning my fingers on the shells because I hated to wait, I wanted to crack them open and put them in their cute little cups. I was fascinated with the cups!
These are similar to Aunt Bette's, except hers had a silver trim around the edges.
I went for a bit of a stroll down memory lane this morning and made two eggs for my breakfast, despite my lack of the very cool cups. I didn't burn my fingers this time, thank goodness, and I only had a little difficulty manipulating the eggs while I cracked and emptied them. For the record, they were delicious.
Today C Claire and I are going school shopping but there is nothing else on the agenda. It's going to be a very quiet, restful day.
I had my car serviced today. It needed a battery and a tweak of the Integrated Motor Assist system. Very minor.
When I picked up my car I noticed the preset radio stations were gone. I went in and asked why, and the service manager explained the stations go back to factory default when there is work done on the battery. Duh, that makes total sense. Happy with this explanation, away I went.
I noticed as I was driving though, that my dashboard lights weren't on. I tried moving the dimmer up and down but there was no change. Not wanting to seem silly since it was probably a battery issue again, I tried to ignore it. I did call the service manager, though, to ask and was told there shouldn't have been any change to my dashboard lights. We agreed if it was still a problem I'd come in Monday for a quick look. When I reached home I was surprised to see my dashboard lights were bright when I turned OFF my headlights. Hmmm.
Okay, so after I cleaned up from the run I had to go to the bank. I got in the car and again, no dashboard lights. When I left the bank I decided to go back to the Honda place today rather than Monday. As I drove I played with the dimmer switch again, to no avail. Then I realized my air conditioning had stopped blowing on the driver's side. Now I was convinced there was something very wrong.
As I got closer to the Honda place I fiddled for a minute with the little button that resets the mileage on the odometer. Just for kicks, I tried turning it. You know what happened, right? Yeah, the stupid dashboard lights got bright. It turns out the dimmer switch I'd been adjusting was in fact the driver's side a/c vent control. I had closed the stupid vent. When I looked over at the passenger side, there was an identical DIMMER SWITCH.
I made a quick u-turn and came home. I am a total fool.
I'm looking forward to the long weekend. This week has pretty much beat me up. I am still out of sorts.
There are lots of plans cooking in my head, both short term and long term. Short term involves movie night with the ladies and a long run; long term involves the house. I need a landscaper, a window man, and a painter. And lots of money. Sounds easy, right?!? If anyone can provide any of those items, give me a call. Haha!
At least the waterproofing is done. And yes, the stupid wall is FINE. Now. And the stupid wall guy (not the first one, a second--the boss) turned out to be fairly decent and gave me lots of tips on what needs to be done to the house to make it sale worthy.
I had a very satisfying run this morning. No watch, no walk breaks (except for the Bluemont hill), a nice cool temperature and a wonderful breeze. No pressure from well-meaning supporters to keep going, no previous times to measure against, just me, my legs and feet, and my thoughts.
I will confess that I am consumed by this illness. I try so hard not to let it show, but I am totally consumed. I think about it every minute: where I was, where I am now, and I fear for where I am going. Every twitch in a facial muscle causes me concern. Every time I take my meds I wonder why and if it's making any difference. My sense of humor and positive attitude are my only real weapons, but they only support my head, not my dumb old mushels.
I guess I'm still dealing with acceptance, despite my brave facade. It's really a Potemkin village.
Today while I was running I decided I would make it an ALS-free day. I ran past the park where I usually see the Serial Killer and his dog (he's not really a serial killer, I just have names for the regulars I see on my course and this name goes along with the fanciful story I concocted...it's a long story). ANYWAY, as I ran past this park I said "Louise, stay here, I'll come back for you next week." Do you think she listened? Of course not. She's such a cow. I found myself thinking about her/it just like always. I must try harder next time.
It was impossible not to think about it when Aaron the orthotics guy came to adjust my resting hand splint. I asked him to tweak it because my hand is more swollen and the thumb is disgustingly bloated. I wake up at night because my thumb is uncomfortable.
Isn't that a strange thing to say? Have you ever woken up because your THUMB is uncomfortable?
To continue, Aaron brought a colleague who, when looking at my hand to see what needed to be done to the splint, commented on the significant atrophy in the web area. He turned my hand over and exclaimed over its witheriness. Thank heaven I was wearing my pointy-toed red high heels and pretty red scarf or I would have felt awful.
It's also impossible not to think about it when, during an emergency toner cartridge replacement, I had to ask David to please cut open the bag for me. Scissors are particularly unfriendly these days.
John the UPS man has taken to signing my name for me when he makes deliveries, isn't he kind? Still makes me think about it.
Oh well. This is really going nowhere. It's just a ramble to let you know where my head is.
I ran a half marathon Saturday and a 10-miler today. My times were the worst I've ever run. Last year around this time I ran a sub-2 half and my best 10-mile time is 1:31. I added just under a half hour to each distance this weekend.
There are two ways to look at this. Given Louise's residency, I should be very glad I'm still able to knock off 23 miles in a weekend, regardless of the time. I wasn't the last one in (though I did my best), my breathing is sufficient if not excellent, my legs are strong if not as strong.
But. This isn't how it was supposed to be. And the slower race times are evidence, just like the withered claw, of what is going on. It makes me mad and it's breaking my heart.
I know at some point these slower run times won't bother me as much as they do today and I'll be able to appreciate perspective #1. I hope it doesn't take as long as these races.
Stupid drywall man was supposed to be at my house between 10AM and 11AM. At 10:11 he called to say he was in Great Falls and would be arriving sometime after 11. At 12:23, having had no word from him, I called and said we'd have to reschedule since the rest of my day wouldn't wait. He said he'd been to three other places this morning, to which I responded it wasn't my issue. The SOB said it wasn't his issue either. That ended the conversation.
I don't think I am being unreasonable in wanting a finished product or in expecting an appointment to be kept. Right?
Race report: I sucked. I've never run such a slow half. I should just hang up the running shoes.
I can't begin to describe the helplessness and frustration I felt tonight. While driving home I reached out to a friend for some expert advice and what I got was something else, a lecture, better left unrecorded. I don't feel comfortable asking for help and this just reinforced my feelings.
I did what may turn out to be a stupid thing but I reached out to a different friend, one who earlier made me regret asking, but I felt desperate. I'm not asking for physical labor, just advice. Hopefully I haven't asked for too much.
In any event, I was so overcome with the burden of having to fight so many battles by myself, I broke down. And I don't know if it was related to the stress I was under but both my stupid hands and forearms--BOTH--spasmed and cramped tonight. Painful, unexpected, stupid Louise cramps. Next came the foot. Can you guess how this added to my disposition? I'm sure you can.
I'm very sad and depressed and feel defeated. It'll pass, but today, tonight, it's just more than I can handle.
Do not even get me started on the stupid drywall. Does this look finished to you? It doesn't to me. The stupid drywall man said to correct it would come out of his own pocket. I, unfeeling bitch that I am, told him he should have done it right the first time.
I am drinking the first of two glasses of tonic water. I haven't been drinking it regularly and last night I woke up twice with the most terrible awful painful cramps in my legs. That'll teach me.
Today I lifted a case of soda from the counter and stored it in the cabinet. Score one for me. But I couldn't take the lid off my salad and had to ask for help. That one went to Louise.
A friend wrote today and invited me to go up in his plane on Sunday morning. I had to decline because I am committed to the yucky Hartwood 10-miler. I did go up once, almost 10 years ago, with a different friend. It was one of the most wonderful times I'd ever had. I hope I get another opportunity.
Must drink the tonic, pack, and get ready for a run tomorrow morning. No more loser activity. Sweet dreams.
Last night I decided I would run today. I packed my bag and went to bed....around 11ish. It couldn't be helped, the balance beam competition was on and we took gold and silver! ANWAY, I got up at 4:30 and made my way out the door around 4:50.
I got to work just before 6. When I parked, I sat for a minute with my eyes closed. Then I saw our overnight person coming out so I got out of the car and grabbed my gear. I was headed toward the door when her car turned and I turned on my heel, put my gear back in the car, got in, put the seat back, and decided to "rest my eyes" for a few minutes.
I woke up just before 7. I slept for almost an hour. I'm such a loser.
As I was driving home tonight I listened to the news. Whether it was WTOP or WAMU, I don't remember. The story they were about to report had to do with sex offenders in the region. Apparently there are 20,000 registered in the DC-VA-MD region. That's pretty high, don't you think?
I didn't pay attention to the rest of the story, however, because another figure popped into my head and my mind wandered: 30,000. Yes, I bet you know what that number is.
So there are only 10,000 more ALS patients in the whole country than there are sex offenders in this region.
It was a who's who in Washington today. Congressman Hoyer. Ambassador Morella. Mayor Fenty. Chief Lanier and former Chief Ramsey. Archbishop Wuerl. Monsignor Sal. More police than you'll see gathered together ever again. Notables from across the city, every industry, every walk of life. And those not so notable, but whose lives were better for having known him.
Cherrie was amazing. Her comments at the end were poignant and tender. She finished by saying Mr D loved his God, he loved his country, he loved his city, he loved her, and he loved all of us.
I came back to the BOT with Allison before going to the reception. In the conference room are small portraits of former chairmen. I found Mr D., Joe Riley and, the one who evoked the freshest round of tears, Bill Harris. I am pretty lucky to have known such fine people.
So. Discussion with Lynne during our run. Fr. Riley's explanation of the Gospel reading was less simple than Fr. Rooney's. Fr. Riley suggested that our prayers are answered, but on an elevated level that we, mere humans, don't understand or perceive. Perceive is actually the better word.
And after much soul searching and questioning myself over the last ten months, I have arrived at this. My apologies to anyone who's heard this before. I don't mean to be repetitive.
I have always and will always believe things happen for a reason. That we are where we are when we are supposed to be. That we do not know the answers to the simple mysteries of our lives, and it is incumbent upon us to live our lives as well as we can (here's to you, Mr. D). We are dealt a hand and we have a responsibility to play it to the best of our ability. I am up to that challenge (I hope).
As well, anyone who has ever loved knows how it feels when someone you love is ill--you want to take it on so that loved one doesn't have to suffer. I've felt that way with my kids, I know those of you who are parents understand what I mean. Well, it may be that I'm bearing this illness for someone else, somewhere else. I don't want to sound all holier-than-thou or martyr-like...but I do like to think I am strong and I am very willing to carry the load here if it means someone else can be spared this insidiousness.
Blah blah blah. I know, these are the ramblings of a woman who controls her blood lithium level with liquid nutrients!
The Wake: Crowded, as expected. A constant, rotating law enforcement honor guard. Thankfully, a closed casket. Draped in his trademark yellow roses. Cherrie was gracious and incredibly strong. The funeral on Tuesday will be legendary.
Mr. D set quite an example. And touched many lives, directly and indirectly.
Today at Mass the Gospel reading was about the woman who came to Jesus asking him to heal her daughter. Her tenacity and faith won the day and Jesus sent her home to her daughter who was no longer tormented by demons.
Fr. Rooney asked us how often do we pray for something but really don't expect it to happen? He said perhaps we should try, like the tenacious woman of great faith who had no other recourse but to ask Jesus, and if we tried and seriously believed we would get what we asked for, maybe we would be surprised by what our faith would yield.
Does this mean I don't have enough tenacity or faith? That my family and friends don't have enough tenacity and faith?
Or does it mean, like Fr. Rooney later said is sometimes the case, and which I've already concluded: the answer is no.
I will be thinking about this during my run this morning.
Many many many many times today my right fingers have gone on a tear. The rebel pinky jumps all over. The ring finger hits computer keys at random and totally screws with my mouse. The forefinger curls and spasms and the forearm painfully contracts. When this happens I try to stretch my hand and fingers and it helps--temporarily. As well, there is increased "pinpoint" twitching in the hand, forearm and bicep. I say pinpoint because it feels like an electric twinge, not like the (still) constant overall twitching I've become accustomed to. It's not painful, but it's very noticeable.
Something else to note: It's getting harder to lift my right arm. I feel like I've got weights strapped onto it, even when I do the simplest things like turn the volume on the car stereo.
I'm so afraid of losing function, first in this limb and then going forward. How am I going to do for myself? I had to ask for help tonight carrying stupid pizza boxes to my car because I was also carrying a cup of coffee. I hate that these little tiny tasks can no longer be accomplished without assistance.
I almost wish I could die now. I know that sounds ridiculous because I'm still in relatively great shape, but it won't always be this way. And I don't look forward to the change and don't want to see the faces of those who see the change and who will be saddled with this lump of nothing.
I'm being such a baby tonight. I don't know what's come over me. Maybe Mr D, maybe I looked down the road of what I'd hoped for and know I won't achieve, maybe I'm just tired. It doesn't matter. I just know I'm sad and scared right now.
Mr. D died yesterday. He was going to be 88 on the 25th. He worked out yesterday morning, went into the office, home in the afternoon. He was found on the kitchen floor. He was someone who lived every minute of his life. A great friend, a generous man. I'm grateful I was allowed the opportunity to know him.
“May you get to heaven a half hour before the devil knows you're dead.”
I finally gave in and took a negative energy call. As expected, bluster and bombast and self absorbed as always. Learned that he lost two cousins and an early client to ALS, something he had not mentioned when we spoke before. He adopted a reflective voice to convey how he'd been touched. I said he, having been exposed to ALS so much more than I, should know all about it.
I am skeptical. I worked for him for six years and never heard about this. And it is uncharacteristic of him not to have mentioned it in our first conversations because it would have made those conversations less about me and more about him.
He asked if I was surprised by the prevalence of ALS. I asked how 30,000 in the US could be considered prevalent, to which he argued if the Registry Act was passed we'd have different numbers. The Registry Act notwithstanding, the organizations who deal with ALS have a pretty good idea of the numbers. But since the Registry Act is something he's been working on (a load of bullshit), he refers to it when he can.
He asked how I was and I told him my hand was weaker and the thumb was not so hot. He, who has been exposed to this disease through family and others, asked if it was sudden. I impatiently explained that NO, it was gradual, like the typical course of the disease. Idiot, does he think that one day you wake up and lose function? He knows nothing, NOTHING.
He said he wanted to spend time with me. I explained I was very selective about who I spent time with and that, since I didn't have control over one aspect of my life, I was exercising control over THIS. That it was a little tiny panacea. He said, NO, it's blah blah blah. I had it. I told him if he said no to me ever again, if he presumed to think he knew more about where I was than I did, I'd hang up. I told him he didn't live in my body, he didn't think my thoughts, he knew nothing about it.
He asked about the genetics. I told him my case was sporadic, that 95% of cases are. He said with the Registry that percentage might change. I said I didn't want to be argumentative but I was pretty sure that the number was accurate based on the experts research. He insisted someone in my family must've had it and I said it was doubtful since I was sure that would have been something I'd have heard from someone!
He repeated his desire to spend time with me. I said "Listen to what you said: I want I want I want. This is about you feeling good about you, it has nothing to do with me." I said I appreciated his support and friendship but...at which point he fucking INTERRUPTED ME LIKE HE ALWAYS DOES and told me "No..." and I railed back and told him NEVER to do that again. I said if he was so interested in supporting me he could just listen to what I had to say, without interruption, and say "okay" when I was finished. He said okay. I called him an asshole. He said okay. I said I had to go. He said okay.
Another sleepy ride home. I hate them so much. I called Becky to talk me in, and she did even though she had plans. When I got home my Jenny called but I was so tired I begged off. I sat in the ugly green chair to rest my eyes until it was time to meet Lynne for our run.
I got up and dressed and made it to the run but must confess I considered canceling more than once. When Lynne arrived she was fresh from her nail appointment and was sporting a fresh pedi. One should never ruin a fresh pedi so I convinced her that we needed to take the night off and go to Pancho Villa instead.
She's such a smart woman, she agreed with very little persuasion.
I'll run in the morning to make up for tonight, but it was a great night and I'm not the least bit sorry.
I have a lunch meeting today. As I was falling asleep last night I thought about what I would wear today. I didn't want to wear cropped pants because they are a little too casual, so I decided to wear my micro-houndstooth pants with a black jacket. Nice and professional.
It does look very nicely put together and polished. That's because you cannot see, under the red top and the black jacket, the emergency zipper pull I just crafted. Sigh. As I was getting dressed it became apparent I had made the wrong choice. This particular pair of pants zips and closes on the left side, so right hand dexterity is pretty necessary. I guess I could have put on a different pair of pants, but I'd fallen asleep settled on this outfit and I was not going to give up. I couldn't hook the hook or button the button, so I didn't even try. The zipper is the key element here, anyway. What is difficult is zipping loose fabric; zippers like nice, taut, straight lines. I did manage to hold the top just enough and, through sheer grit and determination, I zipped the zipper. I need to mention the zipper pull is about as big as a fingernail clipping, but not quite so large. Yeah, it's microscopic. Anyway, mission accomplished and away to work I went.
As I drove I pondered. Yes, just like the sports bra pondering of Sunday, much zipper pondering occurred this morning. When I arrived, I grabbed a paper clip
and a rubber band
and threaded the rubber band into the paper clip.
The paper clip is now attached to the micro zipper. I wish I had a picture so I could post it. You'll have to use your imagination.
I haven't yet had the opportunity to test my invention. I'll provide an update when I do.
Want to go watch the Olympics so this will be brief.
Ran about 8 miles this AM. Felt great. While running, pondered the sports bra issue. Have come up with a couple possible fixes, AND managed to do quite well with just a slight alteration in approach. Just goes to show one must sometimes think outside the box.
Went to the support group meeting after all and found it very useful. A couple of new people were there, recently diagnosed, and topics ranged from MDA registration to my dumb sports bra to gel seats in wheelchairs to shower slings. All very helpful and sometimes entertaining! As well, Christine Kirkley from ALSA was there to talk about the upcoming Walk to Defeat ALS.
My upcoming trip to Maine has been postponed because my cousin is ill. He is in his 70's and had hoped that his ailment would be resolved by the time of my trip, but it looks like that will not be the case. I am hopeful that he'll be his old self again soon and then we can plan for a future visit.
I think that sums it up. Hope everyone has had a good weekend and enjoyed the superb weather!
When I was making dinner tonight I thought of all kinds of witty things to say here...but now I'm here and my mind is a blank.
So, no wit. Just plainspoken words.
We ran this AM, intending to do 2 hours 45 minutes. Part of the run took us on the back trail at the battlefield, which is where the "I am a deer" moment occurred. I attribute it to roots but there were several almost-trips. I really believe it was roots. On that topic, I know I've mentioned before several occasions where my foot "bumps" (not a full fledged stumble). In re-reading some of my posts I recognized a common denominator: Target. I almost always wear flat shoes there and have never picked my feet up properly, so I think it's the way they do their floors. In fact, I am convinced of it. That's one mystery solved.
Anyway, the trail surface is fabulous even if the terrain is uneven. The problem was coming off the trail and back onto pavement. The trail can take it out of you, no two ways about it, and then hitting a different surface will finish the job. Lynne and I made it to my car and beyond, but only pulled off a 2:27 or so. We're on target with our training so I have no regrets about cutting this one a little short.
A nice rest of the day ensued; got the car serviced; had a hair appointment; had a wonderful visit with Kenny and JR. Picked up groceries on the way home as I had decided to make shrimp and garlic in olive oil over pasta. Yum!
All was fine until I tried to break the spaghetti. Just like when I opened the lipstick, my stupid hand spasmed and I had to ask for help. It's getting easier, this asking for help thing, but I don't like it very much. The more I ask for help the more it means I am losing independence.
Tomorrow is a support group meeting. I hadn't planned on going but after talking with Lynne, who said she'd like to go, I changed my mind. It's good that I'm going, I think. You think?
I bought a new lip gloss today. My favorite Chanel is on its last legs and I wanted something as close to it as possible. Off to Macy's I went and got a nice little Elizabeth Arden. Lovely.
I just tried to open it. It was difficult and I squeezed too hard with my right hand. My ring finger went into full freakout mode and contracted so badly, and my forearm contracted so badly, I wanted to cry. It finally loosened but only some, the pain I have when moving my finger is pretty awful. This totally sucks.
My mother used to tell me that her mother used to tell her: you have to suffer to be beautiful. I better get some irreversible beauty out of this one.
Today a friend asked me if I'd started the ball rolling with my Social Security Disability application yet. My friend said she'd heard it might take as long as two YEARS to complete everything and it might be in my best interest to check.
After having the dumb-thumb morning, I started feeling, hmmm, a bit LOW. Okay, no, I do not mind people saying stuff like this. It's well meant and helpful, even if it does make me think less than Polly-like.
I checked. I won't be able to start this process until I am no longer working or am only making a part-time pittance. And then, because ALS patients have a FAST TRACK option, it should only take a couple of months. Well, isn't is fortunate I have ALS--I get preferred treatment when I become disabled!
Here I go making lemonade again...or trying...
Sigh. Just keep smiling, right? I've had a lot of stuff in my head this week. I hope I haven't let it show too much.
This morning I went for a really good, short run. Got back to the office and to the locker room. These days I have to hook my right thumb strategically if I am going to get my sports bra off. It's usually difficult but ultimately successful. Today was different. Remember the post about being trapped in my little black dress? Well, this morning I was trapped in my stupid sports bra. It's so hard to manipulate with only one hand. There I stood, tangled up with only the left hand available to me, all alone. Several futile attempts to extricate myself from this horrible restraint found me in tears. I was cursing my sports bra, my useless thumb, and stupid Louise.
Yes, eventually I managed to figure out a solution. Impossible to describe except to say I finally got out of the tangle by stepping out like I would step out of a skirt. What an awful experience.
It's the end of the workday. The mood improved, even if the shoulder/neck and thumb did not.
Caitlin and I had a nice lunch at Bistro D'Oc and made a surprise visit to D-land. Everyone was at lunch so it was easy to see everyone at once. I'm not sure how it was received by some, but it was a short visit so not too intrusive.
I had an email from a negative energy. Rather than engage in a conversation I deleted it. Much better for my psyche.
Much work was done today in ye olde basement. Want to see? Of course you do!
The planter thing that is clearly not a planter has a wire of some sort coming out of its top. I think it may be connected to, or is, the sump pump.
The window well pipes are nicely sealed and the floor is reconcreted. I made up that word.
More reconcretion. And the awful corner.
The blue thing has to do with my well. I'm not sure what, but I believe it is important.
So that was quick. The two week timeframe must include the drying of concrete and the drywall work. I am well pleased. What does surprise me is that we'd been asked if we would permit people (builders, etc.) access to our home so they could see the work before and after. So far not a soul. Maybe it's too soon. I don't know. ANYWAY.
Now. Today I realized something that likely isn't NEW but it's the first time I've noticed it. I had a diet coke at lunch and went to take it out of the refrigerator at work. As I reached in I realized my right hand doesn't form a "C" anymore. The best I can get is a sad sideways "V."
I can pull the right thumb with my left hand to force a "C" but as soon as I let go the "V" returns. I note this dispassionately, but I will admit to having been shaken. It passed, it always does, but still.
And one of my coping mechanisms is to show you the hands as they are at present. Please enjoy.
Good muscled thumb vs. bad mushelly thumb.
The left hand gets an A+ for being able to hold all fingers together. The right hand fails miserably. I don't know if it shows here but the right is also a swollen Hamburger Helper hand. Bleah.
The left forming a lovely "C" while the right, fingers splayed, makes a pathetic attempt and only succeeds in looking like the claw it has become.
I just had an email from my new PLM friend. She's in a better frame of mind and is taking some of her baby steps. I hope part of her better mood comes from knowing she isn't alone, not by a long shot. Cheers, my friend.
C Claire and I are supposed to go for a run tonight. At 7. It's almost 6:30 now and she's sound asleep. I suspect there will be no run tonight.
The waterproofers started today. This is some major work. I'm broker than broke with this, but figure it'll be better to do it now than wait until a home inspection demands it. I'm attaching pictures but you must promise not to judge.
This is a critical piece, from what I remember of the sales pitch/presentation. Don't ask me what it is...looks like a potential planter to me.
Newly installed pipes which will take water from the window wells into the newly installed and under gravel pipe which I think will lead to the planter thing.
Although there don't seem to be any incoming pipes in the above picture. I must have it wrong. You think??
This was the worst corner in the house. I'm loving the gravel look.
Totally totally nasty. Who among you remembers this bit of hideosity? (I just made up that word to go with this forgotten remnant of yester-century.)
So the work is supposed to go on for about two weeks. These people will also re-sheetrock/drywall etc. The floor is ours to deal with but I had planned on that anyway.
We have moved everything necessary to our daily existence upstairs and are living quite comfortably, an indication that this house is too big for our needs. When I point this out I am met with stony silence but it is what it is and times they are a-changing. Right? Right.
And on that Louisey note, time to show off my new oh-so-delightful t-shirt, compliments of PLM. I have updated my progress etc. enough that I am now a three-star member. Along with my shirt, they sent me a nice form letter and a fat pen. Don't be surprised if, the next time you see me, I am sporting this new addition to my wardrobe while waving about my fat pen looking for something to write.
And, because it is for a cause we are all now very aware of, I offer the following:
I hate that I am doing this but I also feel compelled to do this. Please pass on either link to friends and friends of friends. Or passing acquaintances. Anyone. Anything will help and maybe, just maybe, there will be a cure in time for me and all the others. And if there is and I make it I promise I will never ask for a penny ever again.
Ha ha, that last sentence reminds me of someone on the negative energy list. No names required. But another on the negative energy list called my cell phone today. I didn't answer because who wants to get all tied up in THAT mess? Not I!
Ha ha again--it's 7PM and C Claire is still asleep. Time for a beer, yes?
There is a new member of PLM with whom I have been corresponding. She is depressed and says she feels like she is just killing time until she dies. I reminded her we were all on the path to that ultimate end, ALS diagnosis or not, we just have the advantage of a warning bell.
I then went to the PLM forum. There are posts today about how close are we to a cure and about a woman who was miraculously cured (MUCH debate on this, by the way, and much skepticism). I read the threads on both these topics and felt the desperate hope in everyone's comments--and sensed my own desperate hope that a cure will be found, for me, for my new correspondent, for all of us.