No comments from the peanut gallery, please

When I revealed my secret to Mel and Suzanne, they shook their heads and laughed. When I told Jenny, she put her hand over her eyes and thanked me for not telling her earlier. I have waited to disclose this little bit of information because I am somewhat ashamed and embarrassed. All I can say is do not judge me, just be glad I no longer have to resort to this adaptation.

I can still drive. Up until April, I was driving to and from work five days a week -- a little over 500 miles. I can still shift gears (yes, recall I drive a stick shift) but shifting into fifth gear and reverse became problematic because the position of these gears is the farthest right, one up, one down. It got to the point where I had to use both hands to put the car in reverse, which I did twice each day: once in the garage and once at home. Not a problem since the car is not moving. Fifth gear presented more of a challenge because one shifts into fifth while driving at a high rate of speed. I overcame my inability to shift with my right hand/arm by performing this maneuver with my left. I held the steering wheel firmly (using the yet to be revealed secret) with my right hand, and leaning slightly to the right, pushed the gearshift into position with my left hand. The first time I did this I was surprised at how easy it was. In the back of my mind I knew what I was doing was not something I could share with anyone, particularly those who did not want me to be driving in the first place. So I remained mum.

In addition to the problem I was having shifting gears, I found that my grip on the steering wheel and gear shift lacked substance. I decided the best way to resolve this was to improve the traction between them and my hands.

Here, now, my secret revealed: After much consideration and experimentation with various household products, I discovered a little dab of honey, worked into my palms as well as the gear shift knob and the steering wheel, made everything wonderfully sticky. Each morning a little spot was dropped into my waiting hand and away I went, happily and stickily steering and shifting, fifth gearing and reversing. I knew the clock was ticking and I was determined to eke out just a few more days behind the wheel.

I know. Very risky, very inconsiderate, totally loopy. When I pulled into the driveway tonight (forward facing instead of backing in) I let out a huge sigh of relief that I was finally finished with driving. Then I went in the house and washed my hands.

Breakup number two

Well, it had to happen. I broke up with Mike today. We both knew it was coming but when the day actually arrived we couldn't believe it. Oh, that sounds SO dramatic, doesn't it? After all, one does not break up with one's physical therapist, does one? But Mike was more than a physical therapist, he really was -- is -- a friend.

He told me that, even though he is not supposed to have favorite patients, I was his favorite. I told him that it had always been my goal to be his favorite because I am so competitive. In all seriousness, however, he is a remarkable person with a heart and a spirit and a compassion that are as therapeutic as his PT acumen.

And he is as funny as hell. I cannot count the times over the last two years I found myself laughing so hard it was difficult to catch my breath. Talk about therapy.

When I identify a new physical therapist near home, Mike is going to reach out and give them my history. No one, though, will ever be like Mike.

À bientôt

Reference the previous post: short and sweet = cake and cards. More of a fuss than I wanted but not over the top. The sentiments in the cards did bring tears to my eyes but I managed to keep them to a minimum. I looked around at the group assembled and wished for the millionth time I did not have to leave.

Another surprise came in the form of a group from across the hall. Several employees from the Institute for Justice walked over to say goodbye, bringing with them a bag full of books, movies, and notes collected from various members of their staff. The notes brought more tears as well as some smiles. The kindness and thoughtfulness exhibited by these people is really something; we don't work together... my relationship with many of them is based on waving and smiling in the hallway along with the occasional chat in the hallway or bathroom.

So. No more commute. No more struggling to park in the garage, or asking my coworkers for help with my food/coffee/pills/laptop/more food/rides to PT and on and on. I am grateful I'll still be involved until my job duties are absorbed by my replacement, to quit cold turkey would be harder than when I quit smoking.

Today

Last day in the office.

It was my plan to leave today and send a nice note to my coworkers after the fact. I should have expected that this plan would fail, and it did. Everyone knows. Fortunately these people, of whom I am so fond, understand my desire for a low-key departure and I expect my exit will be short and sweet.

I am going to miss them.

Mother's Day 2010, plus

You remember this, don't you? Yes, yes -- twisted beyond all recognition, isn't it? However, if you know me you know I am also twisted (and, ha ha, these days in more ways than before). Imagine my delight when my eldest daughter presented me with a gift of the utmost twistedness:



I seriously doubt if anyone will appreciate it as I do, but I love it.

From Becky I got some lovely scented oil and reeds, since I am unable to light candles. Cecilia gave me a thoughtful and sentimental card, something she's not always inclined to do. We had a lovely day, a lovely brunch -- Mother's Day is always very special to me.

I was remembering last year, our New York trip. When I think back to how much walking I did, I am amazed at how much has changed.

----------------

Notes:

Seventh: My stupid feet look like sausages. I don't understand why they decided to swell just at this moment, but they did and they look and feel awful. Putting my feet up does not seem to help. I wonder if this is something that goes along with reduced leg function.

Eighth: This week is my last week. While I am increasingly frustrated at the challenges I face doing my job, I am not looking forward to leaving. I have a few personal projects I am going to tackle but I will miss the interaction with the people in my office. I'm going to have to figure out a way to get out several times a week so I don't go stir crazy.

Ninth: The cotton sheets are back on the bed and work exceedingly well with the bed wedge.

Tenth: Quads are cramping like hell. Totally, totally sucks.

Okay. No more enumerating. I'll lose count, you'll lose interest, it's a no-win situation.

I have a new shower chair that is higher and has arms. It fits nicely into my shower and gives me a more secure perch. I am able to stand on my own and exit the shower with only a little help. I remarked to Jenny this evening that I thought we'd found a nice workable system. She agreed, but reminded me it was only going to work until I got worse. Twisted me laughed at the truth of this.

I am going to get worse. I'm already worse. The inevitability of this sometimes stops me in my tracks and breaks my heart. Pollyanna and her perky platitudes desert me and I'm left looking at swollen feet and ugly hands. This past week was particularly difficult, hence the lack of posts. Leaving work, filling out forms for all manner of benefits, saying goodbye to what was...I've shed quite a lot of tears. Practical me hasn't quite regained control but I am working on it.

Anyway, happy Mother's Day to everyone.

Should be fun...

Click here to view the invitation!

Host:
Becky McGee

Location:
1523 Toney Lane
Manakin Sabot, VA 23103

When:
Saturday, June 5, 2:00PM

Please join us for a CORNHOLE TOURNAMENT to raise funds for ALS research! Fred Snyder was kind enough to let us have it at his house, so there will be plenty of room for everyone and everything (pool, grilling out, frisbee)! Burgers, hotdogs, and a keg will be provided, anything else please bring on your own. It's a $30 buy in per team ($15 per person) with all funds raised going towards ALS research. The grand prize for the talented team will be two $50 Visa gift cards. Let the festivities begin!

More notes

Fifth. I don't know how long it has been since I have required help getting out of bed but I would say easily 3-4 months. I mention this because it seems I now require assistance getting INTO bed. The last couple of nights my legs have been too heavy and have had to be lifted. On the occasions when I try to raise them myself I put too much pressure on my back, and that will do me no good at all.

Sixth. Bed wedge + satin sheets = FAIL. I kept sliding. Cotton sheets going back on the bed today.

Moving right along

Yesterday's mail contained good news -- the smaller of my two long-term care policies is authorizing benefits effective April 27. I do not have a waiting period on this policy (thank you, Art), I can start making claims immediately. The only catch will be if they do not authorize payments to Rose. I'm hoping she will meet their requirements since she is certified, despite the fact she does not come through an agency. Once I get that one detail ironed out I will be able to engage her twice a week.

I may also look into getting somebody to come in on Sundays, just for a few hours. I'm often by myself in the afternoons and this would give me an extra pair of arms and legs. I wonder if caregivers are even available on Sunday... I guess I'll find out.

This should keep me busy for a while.

Determination

Where there's a will, there is a way.

No one was around this morning and I was determined to get clean. Bath gloves are the most effective so I decided to try to put one on my left hand. I got the first three fingers into the wrist area without any problem. I struggled trying to get the pinky similarly placed; using the inadequate forefinger of my right hand didn't help, if I got the pinky in then the left forefinger popped out. My teeth came to the rescue and, after several attempts, I managed to get all five fingers into the palm area of the glove. Now to get the fingers into their assigned spaces. My teeth were less effective here. What finally answered was placing the empty glove fingers against the edge of the sink, holding them in place with the heel of the right hand (which had, until now, just been a disinterested observer), wiggling the left fingers into the appropriate spot, then tugging down with my teeth. The entire process took 12 minutes.

Having accomplished the "gloving" I was able to perform my morning ablutions very satisfactorily. When I was finished, I looked like this:

All in all, a good experience.

(Note: that is not my sink, those are not my bath gloves, and those are not my teeth.)

Vendredi

Okay. Just making some notes.

First, I did not have as much cramping in the calf muscles last night. Whether it was because I stayed hydrated or because I did extra stretching, I don't know. I don't really care, all that matters is I was not in as much pain.

Second, I am going to buy a bed wedge BECAUSE a) the last several nights I have experienced lightheadedness a few minutes after I lie down, and b) I've had more episodes of the gaspy breathing. The lightheadedness I attribute to the labored breathing that occurs when I'm getting into bed -- it's almost as if I'm hyperventilating. The gaspy breathing occurs sporadically and wakes me up. It scares me. Elevating my upper body should fix both problems.

Third, every now and then I find that I forget that certain functions used to be easy. It's been such a long time since I was able to pick up a pen and sign my name, or put toothpaste on my toothbrush, or put on my shoes; it is as if the way I do things now is the way it's always been.

Fourth, I have to make a conscious effort to sit up straight and not lean to the right. This leaning phenomenon happens gradually until I realize I am close to falling out of my chair. Since my right arm and my right leg are my weakest limbs it stands to reason that the muscles on the right side of my trunk are similarly weak.

There is no number five. I am finished, for now. Enjoy your Friday and your weekend.

A little bit of whining

Never, even after all the marathons I've run, have my calves hurt like they hurt today. The cramping I experienced last night was unprecedented and woke me up three or four times. When I got out of bed this morning I had to sit for several minutes and stretch before I could put any weight on my legs.

I wonder what prompted this? Perhaps I am under-hydrated. I will drink like a mad fool today and hope for the best... even though you'll probably be reading a follow-up post about my adventures in the bathroom. Yep, I am a laugh riot.

T - 17

I met one of my female coworkers on my way to the restroom today. She was going there, too. I took my very specially designed key and unlocked the door, used my right shoulder and arm to push the door open when all of a sudden the door pushed further than I had expected and I started to lose my balance. My coworker, trying to help, had pushed the door from behind me not knowing that even this small bit of assistance could land me on the floor. Fortunately I was able to catch myself, but not before I exclaimed, "Don't do that!" Poor girl, she apologized over and over -- she had no way of knowing and I do not fault her at all. Next time, however, I will follow, not lead.

It's official. Last day will be May 15. Coincidentally, my first day with the company was May 14, 2007. This is a milestone I thought would occur much later, but here it is. I guess my old boss was right -- I'm a quitter. You know I'm sitting here laughing, right? Anyway, I plan to leave quietly without any fuss; I do not relish saying goodbye to my coworkers. I would only cry and make everyone uncomfortable and nobody wants THAT. I'll write them a nice letter instead.

I gave Mike the three-week warning today when I went to PT. He noticed that I canceled several appointments so sort of guessed why. He would not let me talk about it, but conversation always came back to the date, the logistics, etc. It is not practical to drive up from Fredericksburg to Arlington and I am really going to miss him. He is one incredible physical therapist...and then some.

There is much I want to say about the relationships which are going to be a casualty of my "condition," but I'm pretty tired so it will have to wait. For now, let me say some of them won't be too painful but others are going to hurt like hell.

G'night.

Vemusement

I answered a call at work today. The caller was from an international entity (I think Russian) and was inquiring as to the proper address to which to send an invitation. My office address is actually quite simple but the street name -- Glebe -- is uncommon and ordinarily I have to spell it out.

You recall, I'm sure, that I have a bit of difficulty with the letter "B" -- more often than not it sounds like the letter "V." When my caller repeated the address back to me, he said "Gleve." I corrected him, but when I did so it sounded like "Gleve." I don't know why, but it was important to me that the name be spelled correctly and I continued to stress the letter "B" even though my pronunciation of it was clearly confusing. He finally got it right (or maybe I did), thanked me and rang off.

Why did I care so much that it be spelled correctly? Why did I continue, given the fact that the more I persisted the more tired my mouth became and the more difficult I was to understand? It's not even that big a deal -- we receive plenty of mail where the street name is misspelled. Clearly I am out of my mind. Or maybe I am trying to exert control over even the most unimportant things since I have very little control over some larger issues. Yes, that must be it. I am satisfied with that analysis.

Time for ved.

Orca

I bought a new shower head, one that can be adjusted for height or can be hand held. I am still able to shower by myself but in recent days must acknowledge that I feel vulnerable and somewhat timid anytime I stand, and I do stand more than I should.

When I was in Paris with Jenny and Lynne, I had a couple of close calls. After the feeling of panic passed I was overcome by a fit of laughter -- making my precarious position in the shower even more precarious -- as I imagined how difficult, even impossible, it would be for those two skinny girls to help me if I were to fall. I imagined the two of them trying to hoist (maybe wrestle is a better word) a slippery, wet whale out of the tub, a whale with useless arms and legs (I know, just ignore it). The visual made me laugh but the possibility of it actually happening brought me back to my senses. Jenny was not amused.

A few days ago my foot slipped during my shower -- not much, but enough to put me on my guard. Until now I have not had safety rails, that is being corrected immediately. As well, I am considering taking another step and asking Rose to help me when she is here. Hence the new shower head; I can sit in my (already walk-in) shower and let her have the management of the rest of it. This is a big step to take but I cannot afford to be brave or defiant. My safety is paramount and, even though I have been accused of having a twisted sense of humor, I do not want to be a twisted m-ass of arms and legs in the shower.

I told Becky yesterday that, while any sort of fall is to be avoided, it is preferable to fall fully clothed. One must think of one's rescuers and one's dignity, yes?

My daughters

Becky and Jenny were over yesterday. I have to say my girls are such delights -- they are sweet, caring, loving, beautiful, incredible women and I am very proud of both of them. They organized my newly spacious room, organized the refrigerator and inventoried the freezer, and helped me wade through the morass of papers that is growing as I submit claims to my insurance companies. Since Becky rarely has the pleasure of assisting with my daily ablutions, she was my helper in that regard. Both girls took me shopping for a couple of necessities (hairspray, new shower head, new area rug, plunk plunk). It was a very productive day and, more importantly, another happy day spent with the kids. I love them so much.

My room

Remember last Sunday I went out to buy a new bed? It was delivered Tuesday. Cecilia got a new bed, too, since she has slept on futons for the last several years. Plunk, plunk, plunk... I do know how to spend money.

Neither of the beds are anything fancy; they are full sized, no-nonsense mattresses with sensible, sturdy frames. I also purchased a headboard for my bed -- again, nothing fancy. Cecilia's box spring is a regular height while mine is low-profile. Actually, as of yesterday, my box spring is the regular height and Cecilia's is low-profile... I hated being so low to the ground so we switched. While it is higher than the lower profile bed, it is close enough to the ground that it is easier for me to get into.

My wonderful, firm-with-a-pillow top-queen-size bed has been moved to the extra bedroom along with John's bureau and side table. This has opened up my bedroom enormously. My house is about 45 years old and the master bedroom is small by today's standards. The smaller bed and the removal of two large pieces of furniture make the room seem almost palatial. It is now much easier -- and safer -- for me to move around in, everybody is happy.

There is also a new, serene quality to this room. Not only are the linens and curtains and headboard all a cool shade of silvery lavender, the bird is gone. Not gone in a final sense, gone to a different part of the house where I don't hear him quite so much. Do not misunderstand -- I love Flapper and love his morning song, his toothbrush song, his shower song, and his "pretty bird" song. What I do not love is the earsplitting shriek he emits when he sees Cecilia. When he sees her, he screams and screams and screams until she comes and says hello. It can be quite nerve-racking. Did you know I had a cockatiel in my room? I'm full of surprises, aren't I? Anyway, the dear bird has relocated and I now have a second serenity room.

This will make you happy

A little less red tape

The interview/assessment went rather well, I think. Suzanne, the nurse, was here for just about two hours during which time we filled out about 20-25 pages of information. She even had to do an assessment of my mental capacity which, since I am such a mental giant, I passed with flying colors. The questions were tough: who is our current president? In what county do I live? What is 100 - 7? 93 - 7? 86 - 7? When we reached 65 Suzanne said I could stop -- her usual patients don't normally get that far (but her usual patients are typically in their dotage).

I had to answer questions about those ADLs I mentioned earlier and I believe she was satisfied with my responses. She considers me a high fall risk, to the point she does not feel it is safe for me to be home by myself. When she left she said she was going to recommend five day a week, 12 hour a day assistance. Clearly that is not going to happen at that level at this time, but it is indicative of the care she believes I require.

Now all we have to do is get the medical records into the hands of both long-term care companies. On my to do list is a phone call to the ALS clinic at GW to see if they've made any progress in responding to the records requests.

One thing I know my doctors have done is complete a form I need to request my accelerated death benefit from the life insurance provided by my employer. In order to be eligible for this benefit my doctor must state that I will die within 12 months from my terminal illness. In general, I can talk about this very casually -- after all, I am very practical and don't much think about my expiration date. As well, this form is just a formality and I don't really have to die in a year. That said, seeing it on a piece of paper affects me just a little bit... it's not the spoken word the floats up into the air and disappears behind uncomfortable giggles, it is an 8.5 x 11 sheet of paper filled in by hand by my neurologist that is sitting on my dining room table waiting to be faxed to the insurance company. It's all a tad morbid.

So. Check a couple more things off the list. Now it is time for bed. Methinks I will count sheep and will subtract by sevens.

Judgment Day

Today is evaluation day. One of my long-term care insurance companies is sending a nurse to visit me at home to determine if I am truly in need of home care at this time. My ability to perform the basic Activities of Daily Living (ADL), which are bathing, dressing, transferring, using the toilet, continence, and eating, will be scrutinized. On one hand I feel it is obvious that I need the assistance; on the other I worry that the rigorous standards set by insurance companies may find I'm still too independent. We shall see.

Randomocity

When I go to the restroom at work I struggle with the "pull down" and "pull up," so much so that I can't help but emit quiet grunts and labored breathing. I wonder what people must think I am doing.

Holding a sandwich has become more awkward of late, I often have to lean into my food rather than bring it up to my mouth. Today, about an hour after eating a very delicious chicken sandwich, I had occasion to pass by a mirror. I was more than a little disturbed to see a not-so-small piece of the sandwich stuck to the bottom rim of my glasses. I wonder why no one told me.

There are eight elevators at my physical therapist's office building, four on each side. The button is centrally located between the second and third elevator doors. Almost without fail the elevator that comes in response to my push is the one furthest away. I hear the bell and walk over to it just in time for the doors to close in my face. I go back to the button and press again. The same elevator door opens -- and closes. I eventually make it to an elevator before the door closes, but not before I smile at the little comedy being enacted in the hallway.

See you at the start line...

Entry Form

Course Map

Warning

Do not, I repeat do not use this company if you want to have work done on your home. They left me with an unfinished job and they owe me over $6000. I have it on good authority much of the money he makes he spends at poker tournaments... I wonder if he cheats there, too.

Success

Well, I made it to work. Traffic was terrible but not insurmountable. Fifth gear cooperated, as did reverse.

So far, so good.

An observation: Art Andrews' traffic report on WAMU is pretty much worthless. I hope he has another role at the station because this report doesn't do anybody much good.

Not the sort of chapeau one prefers...

I have no right to complain. I may have fallen and hit my head something fierce, but a least I hobbled away intact (at least on the exterior).

Becky's boyfriend -- John Wallace of speedy running fame -- was attacked by a large piece of wood (I think it was the backyard swing?) and had to get stitches and this lovely bandage. I don't remember the entire story, but Becky (who has permission to write on this blog) can fill in the blanks if she chooses. Poor John!

I hope that Becky is taking good care of him.

I'll get by with a little help from my friend

The second day is always the worst. I'm unbelievably sore and stiff today, predominantly my neck. My land m-ass is none too happy, either. I think I was wise to stay home.

The nurse who does the assessments for one of my long-term care companies just called and has scheduled an appointment for Thursday morning. It was her only availability so I had to take it, but it means a very short week at work. I know it will be fine but I can't help but feel awkward about working from home so many days in one week.

I don't know whether it's the aches and pains or the work schedule or the nurse's visit (or maybe a combination of all three) but I'm feeling quite out of sorts, as though Louise is right up in my face mocking me. Thank goodness I have this little visitor to help me get through the day...

Today I remained upright

All things considered, not a bad day today. I've been tentative in every activity -- walking, in particular -- and have accepted help from everyone. It's funny... I feel fine but I lack confidence.

No one is permitted to make me laugh when I'm standing or walking. It's hard to avoid joking since that is our usual standard operating procedure but all I have to do is start to tip and the joking stops. Nobody wants to be responsible for my next fall.

One thing that has been increasingly difficult -- and last night was near to impossible -- is climbing into my bed. It is quite high off the ground. The decision was made today to buy a lower profile bed so off we went to the mattress store. John got the wheelchair out of the trunk, I plopped in and we went toward the ramp, only to discover it had been blocked by a big balloon mattress used for advertising. Needless to say I told the mattress store employees they should reevaluate where they place such things. I was going to offer a suggestion but thought better of it... after all, these people were going to sell me a mattress.

I decided to give myself one more day at home before tackling driving and the office. Despite the fact that I feel fine, I AM a little shaky and I am trying to be cautious; it has been pointed out to me I did suffer a bit of a trauma yesterday. Fortunately dear Mel is very supportive -- I'm very lucky to work where I do with all that is going on.

I took a poll today and everybody I asked was in unanimous agreement: we all hate Louise.

The bigger they are...

Another day, another incident...

Saturday, I was getting ready to meet Melinda at a local winery; we were going to have lunch and sample a few glasses of wine. Poor John was called upon to help with cleaning and deodorant and dressing; he managed all very creditably and we both laughed at the absurdity of this entire situation. I started to laugh a little too hard and began to step backward, thinking I had a wall behind me. No, there was no wall, there was a doorway and as I passed through it -- backwards --- and realized I was falling, hilarity turned to panic. I knew what was happening and had no control, no ability to stop it.

The land m-ass hit the hardwood floor first and a split second later the back of my head hit the floor with a loud crack -- I was certain my head had split open. (That it did not still amazes me. Our bodies have an amazing capacity to weather punishment.) John came running and made me rest there for a moment before trying to get me back into a standing position. The knot on the back of my head was already forming but fortunately there was no broken skin. When I was ready to attempt standing, John first got me into a sitting position and then lifted me -- very capably, I must admit -- to my feet. I slowly walked over to the living room chair and sank into it.

Ice was applied to the growing bump on the back of my head and I considered what I was going to do -- I still wanted to meet Melinda but felt too shaky to drive. I called her and asked her if she could drive me home if John drove me to her but she, ever the wise and concerned friend, suggested we postpone. I was disappointed but had to concede that it was better idea.

I slept a bit after that and woke up to a considerably smaller lump. A visit to Kenny's was scheduled for the afternoon and I made it, thanks to John's taxi service. I was conscious of feeling very frail and feeble -- I still feel that way.

Hopefully I will feel more the thing tomorrow. Right now everything hurts.

***********

Update: after a good night's rest I feel fine. Still a bit shaky and stiff but that is to be expected. The new rule around here is I am not allowed to laugh or cry or do anything unless I am sitting down, per Jenny.

I am a Terrapin. Really, I am.

I just had an absurdly unpleasant incident. Becky called while I was downstairs in the serenity room and, since the reception downstairs is poor, I went out to the backyard. I was going to sit on the little brick retaining wall next to the back door... but the land m-ass miscalculated and I fell backwards into the dirt. My left side was resting on an old stump (actually, it turns out it was a large rock), my head and the right side of my neck were resting on an uneven brick, my right leg was hanging over the wall, my left foot was resting on the wall. I dropped my phone when I fell but my Bluetooth was still in place; I had to hold it with my left hand or it would've fallen, too, and then I would have been up a creek. I could not for the life of me put myself upright! I felt like a turtle. It was terribly uncomfortable -- no matter what I did I was unable to move my back or neck into a better position. Of the two, my back was in less pain. The way my head and neck were positioned on the brick was awful and every time I tried to move only made it worse.

Becky called her dad who was on his way home from picking up Cecilia from school. While I was waiting the absurdity of my predicament made me laugh and cry at the same time. Even though I knew none of my neighbors were around, I called out for help. Because I was laughing it didn't sound like "help," it was more like "hellnfh." The man at the park in Richmond who told me to have a great day would have been doubly sure of his initial impression of me. Becky called me back and stayed on the phone with me until John returned with Cecilia. I didn't have to wait long -- only 15 minutes -- and then I was rescued.

I may end up with a pretty bad bruise on my neck and may have one on my back as well.

Another step taken

I have to admit I had conflicting emotions last night. Rose came on board, which made me both happy and sad.

Sad may be an overstatement. Having gotten to the point where I actually need outside help, acknowledging it and acting on it doesn't make me sad -- I guess I'm more resigned.

But having my meal prepared, having my hair washed (with a bonus scalp massage) and dried, having each toe and finger dried after my shower, having lotion applied, receiving 100% assistance with my clothes, this made me happy. Even relieved. Definitely grateful.

Rose is strong and capable and kind. And she's not only helping me, she's helping everyone else who is helping me, Jenny most of all. I am actually eager to get to the point where I can engage her twice weekly... once again I say thank heaven for long-term care insurance.

In other news: first post-spring break meltdown tonight. After two days of seeming normalcy, I didn't see this one coming. My stomach is still tied up in knots. I wish Rose could fix this.

A room with a view...

I received this today. Made me smile.

Spotted in Paris

Photo by Jenny

Dinner in Paris

When Cecilia and I went to Paris in 2005 we stayed in a little hotel on rue de l'Exposition, near the Eiffel Tower. Across the street was a cute little restaurant, L'Auberge du Champ de Mars. On our last night we dined there and it was one of the best meals I've ever had. I had a Kir Royal to start, foie gras and toast came next, followed by glazed duck with a potato pancake, as well as a lovely bottle of red wine. Crème brûlée was my choice of dessert after which I had a cup of nice, strong coffee.

I returned in January 2007 when Becky, Susan, Rachel and I visited Paris, and again in June 2008 when the girls and I did our crazy three country tour. Each time I got the same thing. The restaurant never changed, nor did my menu choices.

This trip, more than likely my last, I went to this little restaurant again. Jenny, Lynne, and I met some friends from Virginia (and one new friend from Denmark!). Yes, I ordered the same meal. If it ain't broke don't fix it.

I savored every sip of wine and every bite of my food. While eating the foie gras I told everyone assembled that each bite I took reminded me of all the good things, all the good memories I had of my visits to my favorite city in the world. David, our new friend, said it was very Proustian, and recalled the episode with the Madeleine cookie.

When dinner was over David acted as my translator and thanked the proprietress and conveyed to her that this restaurant was my favorite. It turns out she and her husband, the chef, may be embarking on a new enterprise after 25 years; it seems there is more demand for Chinese and Italian restaurants. How unfortunate, but how glad I am I had one last meal at this little gem.


Bon appétit.

Bucket list item realized

Last night I went to my last Wizards game of the season. I had four tickets to the game as well as to happy hour (one of the perks of buying tickets from a season-ticket holder). Wendy, Mel, Lynne and I had a quick drink at Rosa Mexicano before going over to the Verizon Center for the pregame buffet. When we got there, however, they had moved the venue to the basement and we had to be escorted there. By the time we got downstairs it was getting close to seven, the hour at which they close happy hour. We managed to get something to eat but, because I am who I am, I had to grumble and poor Laura (the nearest Verizon Center representative) got a little bit of an earful.

After we ate and before going to our seats I took a chance. Poor Laura was still nearby so I beckoned to her to come over. I was in my transport chair looking very pathetic and I explained that I might not have another opportunity to come to a Wizards game, that I had Lou Gehrig's disease and one of my bucket list items was to watch a game from seats on the floor. It took forever, and she only got two tickets, but Laura came through. Wendy and Mel went to the regular seats in section 113 (which are great seats) while Lynne and I were escorted to seats directly behind the cameramen by one of the baskets. I was in heaven! I couldn't believe I was actually on the floor, so close to my beloved Wizards.

They didn't play badly but unfortunately they lost. No matter, I got to see them while they were playing well from a vantage point I never thought to enjoy.

I can check that one off the list.

(Wendy and Mel: thank you for being such good sports. I hope that you enjoyed your seats as much as I did mine.)

Incontinence. Warning -- full disclosure.

Yeah. In-con-ti-nence. Again. One hell of a topic.

Let me preface this post by reporting that I had a very productive conversation with one of the representatives from my long-term care insurance. She called to do the initial interview to determine how many of my activities of daily living (ADL) are impacted by Louise. During the course of the conversation I learned I may be eligible for a waiver of the elimination period because of the nature of my illness which would be FANTASTIC because that would allow me to hit the ground running (I need to find more appropriate clichés). Additionally, they do not restrict me to an agency as long as my private aide is licensed and/or certified (note to self: check with Rose about this). Another happy discovery is that, when I am deemed eligible to receive benefits, my premiums are suspended. All good news.

So, back to incontinence. One of the questions asked of me was if I was able to maintain continence. The honest answer is no. Forgive me if this is something I've mentioned before but when the urge hits I don't get much warning, and the walk to the restroom is fraught with peril, as is the excruciating time it takes to do the pull-down. Long story short, there is a lot of laundry.

This morning was the worst I've experienced to date. I had a great night's sleep and woke up near 7 AM. Since I am back in my own bed I am able to turn and stretch and prepare myself to get up. I had turned onto my right side and was luxuriating in my beautiful sheets when it hit. Oh my God, how it hit. I called out to John to help me get up but, when I was finally in a sitting position, I couldn't move. I employed every trick I knew to try to distract myself to give me some time to make it to the bathroom. You know the feeling, everyone knows the feeling. Finally, the coast seemed clear and I got up and walked toward the bathroom -- about 20 steps away. With 15 steps to go it hit again. I had nowhere to go -- I couldn't sit and I couldn't stop. I baby-stepped along and almost made it. Almost, but not quite. With my thumbs hooked into the waistband of my pants the dam burst. I tried and tried to control it, to no avail. I stood there horrified as my bathmat bore the brunt of my bladder's breakdown.

Oh, Stadium Gal, where were you when I needed you most?

I peeled off my pants and dropped them, along with the mat, into the laundry. I turned on the shower and stepped in (still wearing a T-shirt) and washed off, disgusted.

I was under the impression this was one of the areas left unaffected. Clearly the ability to pee and poop are unaffected but your ability to control when you go must be what is compromised. What I need to do is make sure I adhere to a potty schedule, going even though I don't feel the need.

I warned you.

Reaching beyond your grasp

You've heard that before, haven't you? I have always liked that phrase and have tried to live up to it. These days, however, it has taken on new meaning.

One of the unfortunate consequences of having ALS is that you cannot continue to reach beyond your grasp; eventually your reach is limited to a very narrow field. For that matter your grasp goes to hell, too.

This disintegration in the reach/grasp ability affects so many facets of daily living: eating, dressing, showering... and going to the BATHROOM. The time has come for me to prepare for the inevitability that, in the not-too-distant future, I will need assistance. I can't have a procedure (as I did in November 2008) to rid myself of the problem; one must pee after all.

Would that I were David Sedaris -- I would give the old Stadium Pal a try.

Repeated attempts at searching for the Stadium Gal were unsuccessful which leads me to believe there isn't one. Not that it would do me much good anyway. No, it is time to plunk down some moolah on a bidet toilet seat. I was researching them this morning -- it's amazing how many there are to choose from. $25 will get you a four way cap, rubber tubing and a lever to control the force of the stream. I think in this case you get what you pay for and I am prepared to move away from the $25 range. I'm not sure but I think my flexible spending dollars might cover this. I'll have to check. Anyway, I'm looking at the models that offer TWO wands for more thorough cleansing. I would also like a heated seat, water temperature control, a dryer, and a wall mount remote control because all the built-in remote controls are on the right side and that does me no good. I find myself intrigued by the models that offer "pulsating" and "massaging" options. Can you imagine? One might never leave the toilet.

Interpretation?

Wednesday night dream:

I lived in a hovel with a tall man with dark, stringy hair. Relationship totally platonic but we shared a bed. He was very artsy. His mother looked like Ursula from the Little Mermaid but she was kind and very upset that I was ill. She apologized for crying to me but I told her that my role in our relationship was consoler. She said she made jokes with her son who then appeared, held me close (I was conscious of his stringy hair and his smoky breath) and whispered that he loved me.

Next I was in Jeff Fay's (an old friend) apartment. He was showing a very bizarre German movie on his wall. I walked past but my eyes were riveted to the scene. From there I found myself in a lot where many cars were parked, in particular four 40s vintage Fords. A filmmaker was explaining that he had filmed these four cars over a period of time, watching the sun rise and set and how the light played on the vehicles. I leaned across the hood of a yellow car, embracing the smooth exterior and feeling the heat caused by the sun. Very comforting.

Then I was in a car being driven by Cecilia. We were in France. As we came to a stop Cecilia tapped the car in front of her. The driver began to holler and I, no longer ill, hopped out and began to yell at the man. I had a British accent and kept telling him I would sue. He then proceeded to back up into our car and he pushed it up the hill. Cecilia was still behind the wheel. I continued to yell but then he smiled and gave me his card -- he was a used car salesman.

Finally, I was in a store that sold curtains. I was with Marc and Michelle and I was smoking. I blew the smoke up toward the ceiling and then announced I would go outside to get rid of the nasty cigarette. When I came back I saw a no smoking sign on the door.

Random.

Interestingly, Jenny, Lynne AND Cecilia had bizarre dreams/nightmares on Wednesday night, too. I used to have pre-race anxiety dreams...maybe we all had pre-travel anxiety.

Mercredi

Did you like the video? It does a fair job of representing what we saw yesterday, but the narrative we heard was far more comprehensive. Just as with so many things I encounter when traveling in Europe, the ancientness (is that a word?) astounds me and humbles me. The tapestry is in such exceptional condition after almost 1000 years, it's unbelievable.

Bayeux is a lovely little town. After we visited the cathedral and the tapestry, we wandered about the winding streets and paths, some along little canals. Truly charming.

Our train rides to and from were unexceptional and very comfortable. On the return train I had a bit of a mishap: I had to climb up three steps from the platform into the car, go through a sliding door to the right and then make my way to our seats. The sliding door was closing and caught me off guard; the train was listing a bit to the left so I was unsteady and, when I put my left hand onto a seat back to keep my balance, my hand slipped and I fell onto the seat back. My cheek hit the top, my shoulder hit the hard shell of the seat. I don't remember how I regained my balance -- Jenny tells me she was there on the spot. Naturally our seats were at the other end of the car so we had a little bit of distance to cover and I was very grateful when I plopped down into my seat.

We had dinner at a brasserie near the hotel, clearly a favorite with locals and a good place to gather to watch soccer. It was a good way to end the day.

Today has been very restful. After I woke up and had breakfast, I took a nap. Totally decadent. I might just take another one later.

Tuesday. Tapestry day.

Bon jour

Hello from Paris. The sun is out and it promises to be a very lovely day.

The flight on Air France was less than comfortable. The seats were ample but poorly aligned and none of us enjoyed much sleep. Thanks to the wheelchair, we zipped through immigration but the time we saved there we lost while waiting for the shuttle. We finally got to the hotel about 2:30 PM; I started my nap at 3:30 PM and got up at 6:30 PM. We had dinner at La Coupole and got back to the hotel by 11 PM. I was in bed at 11:30 PM.

My sleep was fitful; I dreamt of not being able to breathe and several times woke up gasping. Not significantly, but not typical for me. I suspect it is my pillow, which also gave me a headache. It's much fluffier than the one I use at home. As well, I sleep on incredibly slippery sheets at home which allow me to turn easily. Not so here. It's very frustrating. I am out of my comfortable element, the environment into which I adapted, but at least I am in Paris. I hope to see Michelle today, and afterward take a nice wheelchair ride up to the Seine. Beyond that, not much. I think the less done the better.

Tomorrow: Bayeux.

Quick clinic recap

I've gained weight, 1.6 pounds to be precise. Everyone is happy. Almost everyone.
My first FVC test came in somewhere in the 60s. I did not have my glasses on so I could not see the screen. I got a do over and came in at 72%, only 1% different from three months ago.
My blood pressure in pulmonology was 146/87. In neurology it was 126/83. I just laugh at these numbers.
Unable to find a decent vein and because my labs have been consistent for some time, we did not have to draw any blood today. There was an attempt, however, and I'm wearing a Band-Aid to prove it.
The speech therapist was able to detect a difference in the way I speak and recommended I do voice banking. It's been on the list for some time, I've just procrastinated.
I did a runway walk so my OT and PT could see how graceful I am on two legs. I do believe I wowed them.
The psychiatrist determined that I was not depressed and agreed with my course of action concerning Cecilia.
My neurologist is going to prepare a letter that I'll need to request an accelerated death benefit from my employer's life-insurance policy. It's very morbid in that she must state that I am not expected to live longer than 12 months. No, I don't have to die, she just has to say that I will. It's all very gruesome.

Speaking of gruesome, that would describe the traffic we sat in on our way back from the clinic. It was a two hour trip door to door -- dreadful.

My evening has been spent preparing for tomorrow's departure. I am approaching this trip with a little bit of excitement, but it's bittersweet. The woman visiting Paris this time is so different. But that other woman, the one who visited before, sure did enjoy herself and has volumes of memories of running, biking, and walking in this beautiful city. I've said it before -- I'm very lucky.

Oh! I can't sign off until I tell you about my darling Adam. Prior to clinic we met for coffee at Starbucks. Lynne rolled me over in the chair and Adam remarked that I always had to make a grand entrance. Lynne had to take a call from work so Adam and I drank our protein shakes and had a cozy tête-à-tête. He offered to push me back to the clinic and, as we were crossing K Street, commented that I was heavy and suggested it was all the beer and bacon I've consumed in my life. I was laughing so hard I almost fell out of the stupid chair.

That about does it. I am off to drink wine through a straw.

À bientôt.

It's April

Check out my little stick figure at the bottom of the page. My legs are orange. It being 1 April, I updated my FRS... I turned 30, down from last month's score of 34. Quite a drop.

Contributing to the lower score: stair climbing, using a wheelchair (even part-time), and my speech. An interesting note on that last. My dear friend Kenny called me today and did not recognize my voice. He said I sounded hoarse and that my speech was altered. Because I do not speak with Kenny every day he would not be aware of the gradual change which has clearly taken place. What is interesting to note is that I am not freaked out by the lower number or by Kenny's observation; rather, I feel detached and unsurprised. Have I moved to a new level of acceptance?

So, Rose was supposed to come over tonight and assist me. I was actually looking very forward to the evening but, just before I left work, I had a message from daughter number three who was still looking for a dress to take to California. I had tasked her with finding one so she would have something nice to wear to church. Because scheduling over the next few days is very tight, I had to take her to the store tonight which meant I had to cancel Rose. Fortunately Cecilia was able to help me with what I needed to do this evening.

We took the wheelchair with us, a first for Cecilia. She loaded it into the back seat of the Honda and away we went. As everyone knows it takes a good deal of strength to push a manual wheelchair, particularly one that is loaded with a certain land m-ass, and my dear daughter had her work cut out for her. She succeeded in rolling me out of the parking lot and into the mall, however, no doubt motivated by her objective.

Happily our visit was short and Cecilia found what she wanted fairly quickly. While I was waiting (out in the main corridor because I detest this particular store's "ambience") I amused myself by watching the people who passed by. The old saying "birds of a feather flock together" must have been coined after a visit to a local shopping center. The rednecks in their ballcaps, the old women with frizzy perms, the teenage girls with rounded shoulders and flip flops -- quite a number of species were represented.

Cecilia at last emerged carrying a bag and we made our way back to the car. I'm certain everyone who saw Cecilia wheel me out felt very safe when they saw me get into the driver's seat! The rest of the evening was uneventful. My dear daughter, still riding the wave of a new purchase, prepared my dinner, helped with laundry, and helped me before and after my shower. She was not Rose but she smelled as sweet. (I know, I couldn't help myself.)

Next up: clinic.

A rose is a rose...

Tramadol. Nothing more needs to be said.

I met with a private hire aide last night. Her name is Rose and she has experience with other ALS patients. We are going for a test run tomorrow night and will set up a regular schedule when I return from the City of Light.

Things to consider:
First of all, the cost. None of this will be reimbursed as I am still in my "elimination period." I think I will be limited to one night a week for four hours a night, which I'm hoping will alleviate some of the burden from Jenny. If I time everything properly and call on a couple of friends, I think we can get through the next several months. I'm keeping my fingers crossed (which, if you have seen me do that lately, is rather amusing).

Next, I have no idea how this actually works. I suppose she will help me do all the things I can't do--food preparation and laundry and the like--but I feel very strange about asking even though I expect this is what she is supposed to do. It's one thing to ask your children for help, it's quite another to ask a stranger. But I will be paying her to help, so I'm being ridiculous.

From a personal care perspective I am less uncertain. I am actually looking forward to having someone I did not give birth to help me after my shower. Having spent a significant amount of time in communal locker rooms it is interesting how modest I am around my children. I do not have any reservations about Rose assisting me with toweling off, applying lotion, or getting dressed. I am actually eager to see how quickly this process can be completed.

You know, it may be such an agreeable arrangement that I will want to engage her for two evenings a week -- an enormous expense. I will figure it out somehow, I suppose. For now, I will start with one time a week.

One other thing -- Rose is a private hire aide and my long-term care insurance requires I go through an agency. I'll need to keep this in mind and not become too fond.

Blast and damn

It did not last. Five more hours and I will be home.

90 days and counting

Pain update: slept well and woke up feeling better. Hopefully it will last.

I've begun the process of finding a part-time aide. The long-term care insurance I took out back in 2004 (for once, a smart move on my part) requires a 90 day elimination period before it begins funding, and I must go through a licensed agency. In the interim I must pay out of pocket so I can engage a private hire. Ellen put me in touch with a woman who, over the phone, seems very nice. I'm going to meet her tonight and go over schedules, needs, etc. True to form I tend to minimize the care I require but, when I look at what I actually need and what my daughter actually does for me on a nightly basis, it's really quite a lot. That Jenny has done so much for so long with so little complaint is a testament to her goodness and I am very grateful to have such a wonderful daughter.

Anyway, I will incorporate the part-time caregiver into a schedule which will include Jenny, Becky, Tam, Lynne, and anyone else who is willing.

Not again

Pain, pain, pain...go, go, go. Please.

Breathing

A report from the pillow:

I went to bed at 11:30 last night after a very peaceful, enjoyable Sunday. Because the pain in my shoulder/neck was back (no doubt attributable to Thursday night's craziness and Saturday's exposure to the cold) I took a tramadol before going to bed, expecting to sleep a solid six hours.

At 1:07 AM I woke up. I was having a sad dream -- a dream about loss -- and I woke up gasping for breath. Maybe gasping isn't the right word; exhaling was normal, inhaling was normal until about half way at which point I had to work harder to breathe in. It did not last long, maybe a minute, but it was unusual and I had never experienced it before.

Odd.

Follow-up

For anyone who might be interested in an update, Friday was a much better day for you know who. She had a productive, successful day at school, came home and took a long nap.

My Friday wasn't bad despite the lack of sleep. There was a car fire in the lowest level of the garage in my building, which I waited out in my "safe room." Clearly I was in no danger because no firefighters came to rescue me. There was some conversation among my coworkers about how I would be rescued should it be necessary. One person suggested that a "huge" fireman could carry me down nine flights of stairs; I offered the possibility that I would be lowered through the elevator shaft. Oh yes, we all had a good chuckle about my rescue alternatives.

Anyway, we have calm seas for now.

Have a great day

Becky and her beau ran the Monument Avenue 10K race in Richmond today and I was determined to be there. Naturally Lynne came with me because, even if we can't run these races together, we will certainly be there to support our other runners.

For the first time in the many years we have been coming to Richmond for this race, we found incredible (translated legal and free) parking only a few blocks from the race finish. Because crowds and walking were a concern, we brought my snazzy wheels.

My ensemble was put together with the object of keeping me warm as the temperatures were in the 30s this morning. I was a vision of loveliness in my thick track pants, my bulky red hoodie which peeked out from underneath my bulkier maroon fleece pullover, and a gold jacquard scarf which, incidentally, nicely complemented my gold "Riddler" shoes. Yes, I was breathtaking.

My breathtaking self comfortably settled in my cute little chair, Lynne and I headed toward the park and Becky. We encountered a few bumps in the sidewalk and learned a little bit about physics. Fortunately our lessons were limited to potential consequences versus actual (meaning I did not do a face plant when we tried to roll over a bump) and we continued on our way.

The chair really did come in handy. The old me would have covered the distance without a thought but since Louise insists on riding piggyback even a short distance can be tiring. The walk from the park to the race start was longer than I remembered and I was thankful to be sitting despite the fact that I still feel very self-conscious.

Becky and John did well, both beating their projected times. After we saw them finish Lynne and I made our way back to the park where we were to meet. Once again, the chair was a godsend.

When we got back to the park, Lynne left me by the YMCA tent and went off in search of the runners. There I sat, in all my loveliness, watching as the inhabitants of this microcosm walked by. A man wearing a hat and long overcoat came up the path, talking on his phone. He made eye contact with me and smiled so I smiled back. Then the strangest thing happened: he came over to me, leaning down so he was close to my ear and said, slowly and very loudly, "Have. A. Great. Day." Then off he went. A few minutes later Lynne, Becky, and John came over and I was telling them the story, laughing because I got the impression from his delivery that the man might have thought I was "challenged." Just then the man came back and, since we were all looking at him, stopped to say that he had seen me and wanted to wish me a good day, that he was working with the announcer at the race, and introduced himself. I introduced myself, too, but the cold weather and the fact that I was laughing gave me a bit of a Louise-accent so that instead of sounding like Debbie McGee, it sounded more like Deh-ie Muh-ehh, probably confirming his suspicion. Perhaps I am being oversensitive -- who knows -- but I found the whole episode very amusing.

Race update: John, with a time of 38:49, was 29th of over 1300 in his age group, was 162nd overall men, and 178th in a field of over 30,500 runners. Becky ran a 46:38, was 74th of over 3100 in her age group, was the 261st woman overall, and was 1685th overall. I'm very proud of both of them.

Part three

It's 1:35 AM. Two and a half hours ago the printer didn't print and the shrieking began, as did the litany of complaints about life, death, school, lack of sleep, Aspergers, ALS, and on and on and on. At 1 AM I moved to the sanctuary provided by the living room; I should have done so earlier since I am not only the one looked to for comfort, I am the target for her frustration.

It's now 1:46 AM. The alarm goes off in four hours.

Part two

My glasses fell out of my hand and onto the floor. I bent down and managed to reach the idiot things, but I couldn't get back up. I got as far up as my bed but then fell backward onto the mattress and couldn't get to a standing position. Cecilia came to my rescue, thank goodness.

Time for a chain for my specs.

Part one

Well, well, well.

It's time to face the fact that my care needs are not as minimal as I want to believe, that it's time to call in some paid help. My long term care insurance MAY allow me to engage a part-time aide prior to retirement but, if it doesn't, I'll find the money somewhere. What's a couple of hours a few nights a week, anyway?

I'll still pursue the Share the Care idea; having an aide will make it easier to fill in blanks. As well, an aide can help with things I am not comfortable asking others to do.

Even though this new chapter is negative because I've progressed to a point where I need more help, it's really a positive.

Making a list...

I'm putting together a potential list for my "Share the Care" team. My daughters already bear much of the burden (yes, burden) of my care, and my needs are as yet minimal. I ordered the book today and look forward to reading about how to organize my group.

Many of my friends have already stepped up and many more have offered but don't know what to do. My fear is they will come to regard me as an obligation; I am reassured otherwise but the fear remains.

Any volunteers?

Another dream

I don't know where I was and I don't know how I got there, I just knew I had to get home to Cecilia. I found myself in a four door old model sedan driven by a man with red curly hair and mustache and muttonchops. He wore tinted aviator glasses. I was alarmed because he drove us into a forest. The roads were little more than trails and became more precarious the deeper we went into the woods. Ol' Muttonchops took every switchback he encountered; these switchbacks went downhill and were slanted and I felt crushed by all the foliage. Muttonchops loved the switchbacks and cried with glee when it seemed as though the car would turn over. Suddenly the car began to slide down, the hood was pointed upward and I struggled to climb out the window but couldn't move because Muttonchops was holding my legs. I was crying, saying over and over that I had to get home to Cecilia but he wouldn't let go.

Math

I recently had my car serviced. This was a big one: the 180,000 mile checkup. In addition to all the other work required at this service appointment, it was suggested I get new tires. This was no surprise given that my tires were 93,000 miles old... the tires before these I didn't replace until I had driven 87,000 miles. I know, most people change their tires much sooner. What can I say -- most of my 180,000 miles are highway miles and my tires were in fairly decent shape, all things considered. In any event, new tires and very comprehensive service later, I drove away $1400 poorer but happy in the knowledge my car was ultra roadworthy.

Now, a very interesting phenomenon has occurred since then. As you know I am ridiculously conscious of the different mileage points on my commute; I can see the Marine Corps Museum as I crest the hill at mile 16.8, and I pass the museum at mile 18.3. My one way commute is 52.4 miles. I am always amazed at the consistency of these numbers. So you can imagine my surprise when I crested the hill on Wednesday and the odometer for this specific marker read 16.6. As I passed the museum, I was at 18.1. When I got home that night I had only driven 51.9 miles. This same thing happened Thursday. Friday the odometer reading was 51.8. It looks like I am logging one mile less per day. At this rate I will drive 20 fewer miles per month. Is this possible? It must have to do with the new tires, don't you think?

I know this seems crazy, but you knew that about me. Right?

To quote a friend: WOW

How to live after mom chooses death

By Monica Hesse

In the end, they sat together in the cavernous downstairs room of her mother's Cleveland Park home -- Zoe FitzGerald Carter, her husband Joe Guth, and her sister Sarah Barron -- and they waited.

(via Michael)

It does not pay to eavesdrop

via Twitter:

rainbowmelee

Times like these I hate my mother. But I have to help... about 12 hours ago via TwitBird iPhone

I will keep pitching

Steeeeee-rike. So disappointing.What is also disappointing is the continued agitation (see above). I think today's appointment actually did more harm than good because now she refuses to see her regular therapist. Well, there are other avenues to explore and I am one hell of an explorer.

I have terminated my carpool arrangement. It's not the right time and was adding stress. Big sigh of relief for having hit that one out of the park.

In appreciation

I was demonstrating to Tam how wonderfully efficient is my voice recognition software (MacSpeech Dictate) and wrote her this little note of thanks:

This is a special note to tam.

Thank you for helping me with my hair today. You have been such a good friend throughout this entire ordeal, and I will always be grateful to you for your kindness, selflessness, and stinky armpit.

I love you with all my heart, the black empty shell that it is.

I suspect she will read this later on and get a chuckle knowing that the entire world now knows that she has a stinky armpit.

(Tam, I meant to ask you about your dad today and am sorry I forgot. I keep you both in my prayers.)

Mother's little helper

I'm working from home today, stopping just now to have a sandwich and put some things down on virtual paper.

The last several days have been rather a trial; Cecilia seems to be experiencing greater anxiety and her reactions are worrisome in that she has become physical with me. We had a terrible day on Saturday and another miserable night last night.

Consequently, I am rethinking the use of some sort of medication to calm her anxiety. I have never been one to resort to a pill, thinking it unnecessary; I've always felt that doctors too often pop a pill into a child's mouth to make them fit into a prescribed niche. After the events of the last several days, however, I'm beginning to think there may be some value in using the proper medication for a specific issue.

One problem I have not been able to solve is teaching her to be flexible and to accept alternatives. So often her anxiety stems from unmet expectations, expectations she creates and that are not easily achievable. In that way she is her own worst enemy.

She has so many things in her life and on her mind: being 16, demanding academics, unfulfilled romance, and her Aspergers demons. Add my idiot "condition" into the mix and you have a recipe for anxiety and unhappiness. My beautiful, intelligent, creative, darling daughter should not have to go through this and it breaks my heart to see her in such anguish.

She sees her doctor tomorrow. I know there is no magic pill, but hopefully there is the next best thing.

What to do

What a weekend. I hope to God we never have another one like it.

I am looking at alternative methods for Cecilia. We may be dealing with a completely different set of issues.

Keep your fingers crossed.

Dreamin'

Last night I dreamt I was in Washington, near the Jefferson Memorial and the Tidal Basin. There are a number of paths around this area, paths I've run more times than I can count. Anyway, I was supposed to meet Jenny to go for a walk with Stella. All of a sudden I realized I was running and it felt so amazingly wonderful -- I was aware of every step and every breath. I felt like I was flying. I saw Jenny and Stella in the distance and ran over to them; I explained that I wanted to continue running as long as I could and asked if she would mind terribly if I met up with them later. Jenny was in full agreement, and she and Stella went for their walk without me.

I ran. My legs were strong. I took big deep breaths. My arms and hands moved like they are supposed to. I ran around the whole Tidal Basin and back up toward the Jefferson, around the front, then back to the paths leading to the steps. It was exhilarating.

I'm happy I can remember how it felt to be so free, so strong. Dreams about running are always welcome.

Finally

For the first time in more than a week I do not feel like someone is drilling a hole in my skin.

No relief in sight

I'm a little disappointed in the response from my healthcare providers. All I want is something -- anything -- that will make this ridiculous pain go away. As fond as I am of everyone who cares for me, right now I wonder if they understand that I would not be asking if it was not absolutely fucking necessary.

Slow and steady

Today's gas mileage: 54.5 mpg. I was able to achieve this because I drove by myself. When I am with my new carpooler I get rather less -- about 44 miles per gallon. Mike does drive faster than I do and having the extra person in the car I think makes a difference. I'm trying very hard not to care about the decreased efficiency of my car and I'm trying to enjoy having another person -- enjoy may be the wrong word, perhaps accept is better -- in the car with me. I very much valued my quiet time in my car both to and from work so this is a bit of an adjustment. Anyway, I drove today and it was heavenly.

I was toddling along this morning, doing my typical 68 to 70 mph, when I came up behind a commuter van that was actually going slower than I was. I decided to pass him and, when I did, I noticed he was behind an unmarked police car who was doing exactly the speed limit. I am not one of those drivers who is afraid to pass a police car if I am doing within the speed limit, unlike so many others who refuse to pass a cop no matter what. So I continued at speed and after a few minutes pulled ahead. There was a commuter bus a little way ahead so I decided to stay in the left lane until I had passed it, too. I was able to see in my rearview mirror that traffic was beginning to back up behind the unmarked car and I was glad I was not in that crowd because it would have driven me crazy! Anyway, I passed the bus and moved back into the right lane. As I approached the mixing bowl there was a sudden onslaught of cars, indicating that the cop had left the highway and everyone else was trying to make up for lost time. Car after car after motorcycle after car came zooming up on the left when all of a sudden I heard something to my right -- a motorcycle was passing me IN MY OWN LANE. He is very lucky I didn't hit him, because I was startled. His license plate said NITROS which I'm sure has some motorcycle meaning but which I believe he must have inhaled before getting on his bike. Having commuted with responsible motorcyclists for a number of years (in a car, not on a motorcycle) I have been privy to some understanding -- albeit academic -- of proper motorcycle conduct.

What is amusing is that I passed Mr. NITROS not long after this incredibly stupid stunt because he, poor fool, was headed to the Pentagon and had to wait in a long line of traffic.

That episode notwithstanding, it was a delightful ride in.

Maddening pain update: still going mad, still in pain, waiting to hear from the doctor.

The salon at Chez McGee

I have three new hairdressers on call who have made a huge difference in my life. All that crap about accepting my stupid curly hair that I spouted in earlier posts is just that: crap. We always want what we don't have and I don't have nice, straight, sleek hair.

This past Sunday when Becky visited she dried my hair with the hair dryer and round brush and it lasted through Monday. Monday night Jenny did the same thing, and my hair was nice and straight on Tuesday. Last night Tam came over and, not only dried my hair, but massaged my fingers to help reduce the swelling; a full spa treatment.

Ladies, I can't begin to thank you for helping me. It means a ton.

Still looking for an amputationer

I am slowly being driven mad. This stupid problem with my shoulder/neck/back persists and seems to be increasing in scope. Nothing seems to help, no amount of stretching (or lack of) makes any difference, changing my posture does nothing, over the counter remedies are ineffective.

Occasionally I am given a bit of a respite, but only briefly. No sooner do I begin to enjoy the pain-free moment than the pain returns.

I can't imagine this is ALS related. Unless it has to do with how I get out of bed every day, which would be indirectly related. I have made adjustments to that operation, but have not yet noticed any improvement.

I still feel the best remedy would be amputation.

I don't understand

Congressman Dennis Kucinich (D-OH) was interviewed on Countdown this evening. He is an opponent of health care reform. At the end of the interview, he said insurance companies make money not providing health care, that this was the fundamental truth about our health care system.

Doesn't that seem reason enough to support reform?

Eating a cheeseburger and chips

Jenny and I had lunch on Saturday with an old friend, Bil. He took several pictures, a few of which I am posting here. I elected not to post the one of me drinking my wine through a straw because, while one must do such things, there are limits to what one will publish. Besides, I had not had my hair done. Louise may do her worst, but she will never affect my vanity.

As you can see I now eat cheeseburgers with a fork, which I manage to hold quite nicely. Chips are held awkwardly but sufficiently between thumb and forefinger.

See how nicely my sweater matches the greens.

It has been some time since I've seen Bil and I think it was a bit of a shock for him to see the change. That happens every now and then with people I don't see often.

Anyway, we had a nice time and the food was good. I would give it a (curved) thumbs up.

Gulp

Yesterday I saw Mike for my regular physical therapy session. Per usual, it was beneficial on many levels: physically, emotionally, and spiritually.

At the end of the session, Mike helped me up from the table. Most of the time he assists from the back but yesterday he was in front of me. As he came toward me the absurdity and the surreality of the situation struck me funny and I began to laugh. And did I laugh -- I think I scared him. I managed to regain control long enough for him to help me put my coat on but, as he was helping me button my coat, I had another attack of the giggles. I laughed so hard that twice -- TWICE -- Mike had to reach out to prevent me from falling. I'm sure he was more than relieved when I finally left his office.

Walking back to the office was uneventful, thank goodness. I'd dreamt the night before that I had fallen while crossing the road and that cars just kept rolling over me, so I was very careful crossing the street. I will confess to feeling a bit unsure of myself and may have to explore an alternate way to get to my appointments.

Recognizing the unfortunate truth that my balance is an issue, I wrote Ellen and asked if there were any folding wheelchairs in the loan closet. No, I will not be able to use it to go to my appointments because I can't push the chair on my own, I will use it when I'm out with someone who can help me. She wrote back and told me one would be delivered.

This is a bit of a tough pill to swallow. But swallow it I will because, as one can tell from the walr-ass, I am very good at swallowing. At least for now.

Position available

It's come to this. My dear friend, Adam, who likes to have control over situations to the point where he tries to plan well in advance for everything, has begun a search.

Adam and I used to run together in the morning when I worked in Washington and, as the miles increased, so did our friendship grow. We talk about everything during our twice daily conversations and nothing is taboo. Making reference to the dismissive way in which my brother refers to my illness, Adam will ask me about my "condition." We counsel each other in matters both professional and personal, but mostly we just listen to each other.

As I said, he likes to plan. So, anticipating a time when I will not be there to listen, he has begun the search for my replacement. Please do not be shocked by this -- I think it is practical and hysterical and when I think about it I start to laugh. And it makes me wonder if maybe other people should start looking for a replacement for the role I fill in their lives. We have plenty of warning and I can even be part of the selection process.

Do not think badly of Adam. Our joking may be morbid and in very bad taste but I know he cares deeply for me and I know my "condition" is hard for him as it is for so many others. I know I am irreplaceable but we have to have fun with this goddamn thing, don't we?

Please submit all resumes and letters of reference via the comments section. Please indicate your availability and the role you want to fill.

Vulvar symptoms

Heh heh heh.

The past couple of nights Jenny has noticed I occasionally say "v" instead of "b" and I have said vefore I feel as though there is a slight change in my speech. My jaw and cheeks feel heavy, and they twitch. So does my nose.

Coughing when drinking happens on occasion and every once in a while a piece of food doesn't quite get swallowed. Nothing provlematic, vut I'm aware.

Add to the mix the laughing (sorry MJ, no video), crying, and yawning and I think what we have here is evidence of bulbar symptoms.

It was vound to happen; this is a progressive disease after all. The general consensus is I seem to have progressed more in the last six months: walking and vreathing are more impacted and the hands--where it all vegan--are less functional.

Consequently, since I ache for one last glimpse of the most veautiful city in the world, I am taking one more long distance trip. Nurses Jenny and Lynne will accompany me, making sure I am comfortavley settled in the Tuileries or Luxemvourg Gardens vefore they go peeking into the Louvre or the Musee D'Orsay. I just want to take a long draught of the loveliness that is Paris.

Vonne nuit, mes amis.

Good times?

One of my daughter's friends "tagged" me in a Facebook post about memories. When anyone comments on this post, I get an e-mail. Here is one I recently received:

"remember when we were with duane & some other kid. & you were drunk as fuckkkkk. & we went to 7-11 to pick up that creepy old homeless guy so he could buy us beer. & then we had to sit next to him & he said he was from georgia, but he was up here to beat his cheatting wife? good times :D"

I guess these kids don't realize somebody's mother is reading this stuff.

Wanted: amputationer, no experience necessary

I have always carried stress in my back and shoulders, particularly on the left side near my neck. In recent months it has become very problematic and incredibly painful. Cecilia occasionally applies the "evil elbow of death" to the affected area which provides temporary relief; Jenny likewise uses her strong hands and achieves a modicum of success. Last night, however, nothing seemed to help. The pain -- a deep, burning sensation (no, not that kind) -- was as intense and all-consuming as I've ever felt. It was still present when I woke up this morning. I do not look forward to spending the day like this.

I knew someone once who experienced great pain in her big toe; she complained that it was making her crazy. She complained enough to one particular doctor that he finally agreed to grant her request: amputation of the offending digit. Yes, you heard me right. She had her big toe chopped off. Extreme measures, yes, and, ultimately, totally futile as the pain remained even after the toe was long gone. Many times I would come upon her, rubbing the stump where her toe used to be.

I wonder if I should have my neck/shoulder amputated. I'm certain that is the answer to my problem.

March 1: score of 34

Okay. My coachman -- Mike -- seems to be a very nice sort of person. He is a smoker but I was not able to detect any unpleasantness during our ride in this morning (and you know my nose was on alert). He is a buyer for a company that builds embassies overseas and has two degrees, one in engineering and one in biometric security, not that that is important. I am keeping my virtual fingers crossed.

*********************

It may be time to consider getting a folding wheelchair for use when I am out with the kids. When Jenny and Becky were here this past weekend we had to run some errands. I managed to make my way into Lowe's, CVS, and Target without incident but, when I found something to be funny (which I always do when I am with my daughters) the uncontrollable and enthusiastic laughter was enough to make me lose my balance; I actually fell backward into a rack of shoes! I did not fall to the ground, but I did bump my back. The laughter notwithstanding, a wheelchair would speed me up a little.

My fits of laughter are becoming well known at the office, too. When trying to tell a few coworkers about a silly dream I had, I started laughing and was unable to speak. Thank goodness I was already sitting. Knowing that this episode might last some time, my coworkers amiably beat a hasty retreat.

What really freaks people out is when the laughing is punctuated by bursts of tears. There are times when I am crying and it turns into laughter and vice versa. Overall I prefer the laughing, despite the loss of balance. Ha ha, I am sure people think I am completely unbalanced with all these crazy emotions, so the imbalance is probably totally appropriate.

So, the new coachman and the possibility of a wheelchair...what other adaptations do I have to report? Oh, right, there is a new grab bar in the bathroom. Getting up and down from a seated position has not been so much fun in a very long time. One must find the gift in all things, remember?

It's a real balancing act.