A new addition

Comfort Keepers. On my insurance company's "approved" list. Caregivers are trained to deal with patients suffering from a variety of maladies, including ALS. My needs were assessed today; the resulting plan of care is most comprehensive. Starting Monday one of their aides will come to my house each Monday, Wednesday, and Friday. I will add Tuesday and Thursday once Rose's schedule is more consistent. I'm also hopeful that Rose can arrange to be hired by them so I can have her every day.

Everyone is happy about this new arrangement. I'm looking forward to having a shower EVERY DAY and having range of motion exercises EVERY DAY and having someone on hand EVERY DAY to help me organize my mess.

It's hard to believe there was a time when I was reluctant to have anyone come in and help. My reluctance was borne of my inability to admit that Louise had penetrated through my denial barriers. I didn't need help, I was fine -- my daughters provided all the assistance I needed. Selfish, stupid, ridiculous me; my stubbornness was taking its toll on my girls. I might not need help... but they did. Everyone has benefited from Rose's presence; the benefits will be multiplied with the addition of another caregiver.

I'll say it again: thank goodness I took out long-term care insurance.

I heart...

Turbo. Me likey. No, me lovey.

Van go back

It sucks when you get your new handicapped van home only to discover it is truly handicapped -- fortunately the seller is a good man and is going to take it back. At issue: the clearance. It never occurred to anyone to measure. Lesson learned.

It also sucks when your Internet provider is experiencing a service outage. The power went out Monday night and with it went my connection. Service was not restored until just a few hours ago.

I have to admit I was feeling rather like Mrs. O'Leary with regard to the power outage. As I am wont to do, I was laptopping in my lift recliner late Monday night. After publishing the previous post I was ready to call it a night. At the exact second I closed my laptop, the power went out. Not just in my neighborhood, I think it was the whole grid because, when she returned home from visiting a friend, Cecilia reported several traffic lights were out as well. Now I know I did not cause the outage but the fact that everything went dark at the very moment I closed my laptop was too weird.

Recall that I was situated in my lift recliner; there I remained until power was restored more than 3 1/2 hours later. Thank heaven nature kindly waited to call until AFTER I was able to leave the chair.

Everything is back to normal now and, once again, I am searching for airbrushable transportation.

Another bucket list item checked

Saturday was wedding dress party day. Wendy, Jenny, Lynne, Stephanie, baby Bella, and I met Becky in Richmond; we went to two salons and oohed and ahhed at all the silk and lace and beading. Sorry, no pictures of Becky in any of the dresses -- that will come in March.


Sorting through 876,514 plastic bags.


Pick that one, and that one, yes, that one, too...


Ooohh...aahhh...


Taking a break from the wheelchair. Those things are NOT comfortable.


Discriminating shoppers...


Becky, what do you think of this?

I think the third dress Becky tried on will be the one she gets. She looked incredible in each one, but number three seemed to suit her the best. We shall see...

Slip sliding away

Bob and Marsha have been my next door neighbors for years. Their third child, Theresa, is my goddaughter and Marsha has been abundantly helpful to me, visiting, bringing dinner, even feeding me. Tonight something happened that brought us closer together than we were before. I slipped. Some might (and some did) say I fell. But I did not, I slipped -- actually, I slid.

Cecilia, responding to my request for assistance, helped me get up from the lift recliner to a standing position (yes, even with the special chair, I still need assistance). I thought I had my balance but I was mistaken; I teetered to left, fell onto the chair, and slid to the floor. This might not have happened but for the fact that I was wearing my oh so sexy knickers (as Rose likes to call them) AND landed on my very glamorous, very functional but very slippery zebra print cushion (on which I was resting my back); my size 11 feet weren't able to support me and down I went.

Cecilia managed to prop me up, then went to call Jenny. At the same time, Marsha arrived to get my dinner for me. Not able to lift me by herself (remember, I am the walr-ass) she called in the few, the proud, the Marine. But not until I put something on over my drawers -- I still have a little bit of pride. Marsha had her work cut out for her wrestling my black pants over my uncooperative legs and rear end.

Poor Bob, I am sure in all his deployments he never faced so unpleasant a duty. He got behind me, Marsha moved to the front, Bob hoisted while Marsha prepared to catch. None of us being certain of my balance, we stood as one for several long seconds. As they slowly released their collective grip, I regained my balance and finally stood on my own.

The battle having been fought and won, Bob was thanked and dismissed. I think he deserves a purple heart -- as he walked home, I looked out the window... he was limping. Marsha deserves a medal as well. In addition to the heroic actions described herein, she became a certified potty pal.

Goodbye

At long last my other long-term care insurance has been approved. Now it is up to me to find a provider.

The insurance company sent me a list of potential providers in my area. I called three of them today. There are several others I will call on Monday.

Of the three I called today, two were unexceptional and are on the "to be considered" list. The third, however, left me cold, to wit:

(Phone rings.) "Hello? Hello?"

"Hello? Is this (insert providers name)?"

"Yeah. Hey, can I call you back?"

"Um, sure, okay."

(Phone rings.) "Hello."

"Hi, sorry about that, I had forwarded the phone to my cell phone and I couldn't tell if you were my family."

"I'm a little concerned about your lack of professionalism. I wonder if that translates into the service you provide."

"No, we are professional. I just couldn't tell who was calling."

"I have ALS and I am looking for a home health aide."

"Is this Medicare or will you be paying cash?"

"I have long-term care insurance. Tell me, do you care for other ALS patients?"

"Oh yeah, sure, we have other LAS patients."

"Well, I have ALS. You know, you're not inspiring any confidence. I think it's best if I just go."

"Oh, okay."

Maybe I am too quick to judge, but first impressions are important -- particularly in this sort of situation. And, as my daughters will tell you, I have fairly high customer service expectations.

Van Go

With any luck I will be in possession of a new (translated used) Ford van by the weekend or early next week. The wheelchair lift (already installed) will allow me to go about in my power chair which is infinitely more comfortable than the transport chair.

I found the vehicle on the Richmond Craigslist. The owner's son kindly sent me the vehicle ID number so I could get a Carfax report from my friend at the local Honda dealership; it came back clean so I sent my future son-in-law (I love saying that) over to do the due diligence. John is very knowledgeable about all things mechanical and his follow-up report was incredibly thorough; he concluded the vehicle was roadworthy so I made an offer.

I am poorer by many thousands of dollars but this is one of those big-ticket items that must be purchased in order to maintain a reasonable quality of life. Getting in and out of a car is close to impossible anymore and, unlike the power chair, the transport chair does not let me elevate my legs. If you've ever had the misfortune to see my legs and feet after a period of un-elevation, you know why this is an issue.

There are two rows of seats behind where the wheelchair locks in, plenty of room for everyone. This may become the official party van. If so, it will have to be properly decorated. What you think of these?
Isn't this breathtaking? I knew the moment I saw the horse running by the water it was perfect. (If I select this one, I will have to change the name to Louise.)

(This will have to do until I can master the latest and greatest in Word Art. Apologies.)

I think the palm trees, the setting sun, and the purple water are so lifelike, so exactly how every sunset at the beach lives in my memory...

This one is almost perfect, except you will only see MY straw poking out of a bottle of Corona light, not extra. Unless, of course, there is no light to be had. Under those circumstances, one's only recourse is to suffer through a bottle of extra...or an extra bottle.

So many options, such a difficult decision. Maybe I will get all three; much like people who have multiple tattoos, I will have multiple airbrushes. I will be the envy of everyone.

Oh to be a Hindu deity

Today is Cecilia's 17th birthday. (I know, I can't believe it either.) I have not had to write or sign anything in a very long time; well, long by my standards, probably 4-5 weeks. Anyway, I wanted to sign her birthday card. The first time I picked up the pen it fell right out of my hand. After several attempts, my left hand positioned the pen in my right hand in such a way that I was able to scrawl "Love, Mom." My handwriting was no better than that of a five-year-old, but it was still my hand.

When ALS struck my right hand was the first to suffer. As my hand became weaker, many duties were assumed by the left: applying makeup, brushing my teeth, using a fork and spoon, etc. But now it's becoming more difficult to use my left hand and, there being no third hand to which to turn, I have to be creative. Enter the small plastic cup, small enough that I can grasp, into which certain snack foods are poured -- including McDonald's french fries WHICH I LOVE. It may look funny but it works, and it gives me the illusion of independence -- well, after someone procures the snack, puts it in a cup, and brings it to me. That's still being independent, right?

Certain foods require that I be fed by someone else and, when my left hand becomes as useless as my right, ALL foods will require a helper. Unless by some miracle (or a hideous curse) I wake up one morning like this:

Nodding gets by the doctor

I think I neglected to tell you that I met with the psychiatrist at my last clinic. This is the second time I've seen him in 2 1/2 years. He's not a bad guy but I'm amused by his thoughtful and compassionate demeanor. He asked me how I was, I told him I had ALS and was not happy about it. He nodded, eyes closed. He asked me if I ever thought of suicide, I told him of course, but that's not my style. He nodded, eyes closed. He asked me how I managed the "dark days," I said, "Klonopin!" He nodded, eyes closed.

When I received my follow-up report last week, his note said, "patient has excellent insight."

I thought it was funny.

Score

Amitriptyline. My newest drug. I take it to minimize the overproduction of saliva (gross) which may have contributed to my recent (last Friday, July 2) ghastly sick day (which I did not publicly document because of its grossness).

I was SO sick. I don't remember the last time I was in such bad shape but I'm sure immoderate consumption of some alcoholic beverage was the cause. Not so this time. Post-ghastly sickness analysis and research brought me to this conclusion: excess saliva (yuck) may become thickish and phlegmy (this is making my stomach unhappy) which, since I am unable to expel this grossness, causes me to gag. Which was 80% of my problem the Friday before last. I also read that some ALS patients use amitriptyline to control saliva, so I took a dose that evening. My mouth was unbelievably dry when I woke up the next morning BUT not once did I have the throat tickle that always made me cough, choke, then gag. And today, 10 days later, I am still dry mouthed and tickle free.

Lovely.

No fair

On Monday night a beautiful young woman lost her life in a tragic accident. The boat she was in hit a channel marker and she was thrown from the boat and drowned. The other people on the boat, including her fiancé, were hurt, some critically.

The young woman was a friend of Becky's. I met her at the cornhole tournament that Becky hosted last month, she was one of the winning team. Outgoing, friendly, beautiful, bubbling with life and excited about her upcoming wedding, this young woman had a spirit that matched her lovely smile. And in a flash, an ugly twist of fate, she's gone.

I don't know why her death is haunting me so. In the last several years I've known quite a few people who died, almost all of them from this idiot disease and, while it is troubling it is not unexpected. For someone to be taken away so soon, so horribly, someone who had so much life, so much promise... it's just not fair. Not fair at all.

WTF?

At the end of April -- almost 3 months ago -- I submitted paperwork for the long-term care insurance policy I have with UNUM. At this writing I still have yet to be approved for benefits. Why? Because they have not yet received the medical records from the ALS clinic. The UNUM representative I spoke with told me SHE was told the records were mailed on June 21 but still hadn't been received, and her follow-up phone calls have not been returned. When I was at the clinic June 28 I paid for and got a copy of my records which Lynne faxed to UNUM several days later. I was told they never received the fax. I made a couple follow-up phone calls of my own and have not received any satisfactory response.

I'm totally fed up and angry. But for this one glitch I would be able to engage additional help during the week; by this time my elimination period would almost be over. It is highly irritating.

Bzzzzzzz

Yesterday evening, during a cookout with neighbors, the mosquitoes were plaguing everyone something fierce. The neighbors' youngest son was a prime target; his little legs were covered with bites. One person, however, remained unmolested. A solitary mosquito landed on her right arm but did not bite. She looked on calmly as her neighbors swatted and smacked themselves, wondering why she was not an object of mosquito desire.

She took the last sip of her drink and had a thought -- perhaps the mosquitoes were not attracted to her because they did not like the way she tasted. Tonic water is the beverage of choice most days because it alleviates leg cramps AND the bubbles make it easier to swallow. And what is in tonic water? Quinine, of course. Bitter, bitter quinine.

After very thorough and exhaustive scientific research (via Google using the search terms "tonic water" and "mosquito") she was satisfied her theory was correct; after all, other people reported similar un-mosquito-y experiences.

Tonic water benefit number three: mosquito repellent.

Note to self

Remember your legs are getting weaker, particularly the right leg. Whenever possible, enlist the aid of someone else in the house when attempting to stand, especially when attempting to stand in the bathroom.
...................

Jenny came by on her way to the beach; she dropped off Stella and helped me with a few things including washing my face. I sat on the toilet (pants up), not facing forward but toward the right so Jenny could more easily reach my face. Washed and dried and moisturized, I moved to stand up but because of my odd positioning my right leg was called on to bear an inordinate amount of my girth and, consequently, collapsed. Fortunately Jenny was nearby and acted quickly, getting me into a sitting position which I was able to maintain while she called her dad to do the heavy lifting. The load was lifted and safely ensconced in the bedsit, end of story.

The remainder of the day I was forced to ask for help whenever I had to stand. I do hope the installation of the Toilevator will eliminate the need for constant attendance and assistance. Believe me, I would be most grateful for additional independence days.

As long as I am plunking, I think I will plunk some euros...

I had the great good fortune to visit Arcachon a few years ago on one of my little hops. It's only natural that I should want to spend some of my retirement in this beautiful little part of the world. What do you think? Will you come visit? Bring your running shoes and we will run along le Bassin, later we will have a salad and wine at an outdoor café. Oysters for dinner, then a meandering walk to look at the charming cottages. It's like a fairy tale...

(The last three images are mine, the others were hijacked.)

Plunk plunk plunk

No, that is not the sound of anything unpleasant dropping into any porcelain bowls in my rooms of rest. Rather, it is the sound of me dropping additional dollars to adapt those porcelain bowls. Not content merely to sit, "go," and freshen, I must needs be able to stand on my own -- at least as much as I can for as long as I can. Consequently, today I purchased risers for my potties; 3 1/2 inches high, they will elevate the commodes sufficiently to allow me to stand more easily. The best part of all is the name: Toilevator. (I used to work with someone who did as little work as possible but had her head so far up the boss' ass she was considered indispensable. She was pretty full of shit, too. With a slight change of letters we can apply a similar word to her: toilevader.)

We even have a graphic today (aren't you glad I did not provide anything more graphic than my verbal account the other day?). As you see, the Toilevator is very simple in design and application, the perfect solution.


(Not my bathroom or my potty.)
(Yes, I added the arrow and the stars. This is a Very Exciting Graphic.)

Not cheap, but not INSANELY expensive. Just expensive. What was INSANELY expensive was the quote we got from the plumber. Fortunately, dear friend Tam knows a plumber who she is sure will give me a better price. Tomorrow is phone call day and he is on the list.

Plunk.

Another disgusting evening at Chez McGee

It did not start badly. In fact, it was very pleasant. My kindhearted neighbor came over to prepare my dinner and stayed for a very nice visit. Marsha has five children so taking care of my dinner needs was a snap for her. She offered to do more -- showering, bathroom, etc. -- but I'm not yet prepared to make her a potty pal. Fortunately for her.

Because.

Oh -- before you read further, let me warn you this is one of those ugly entries that contains nastiness. You of delicate sensibilities may wish to avert your eyes. Those of you who remember me from classier times please do not let this account tarnish your memory.

To continue.

Because.

I didn't make it. AGAIN.

I was sitting in my bedroom, writing e-mails. Suddenly I was uneasy, I felt a gurgle. It hit hard and it hit fast, with no warning. I couldn't move. When I tried to get up, I lost control. Fortunately granny panties are sturdy and held fast (I do believe they are made of lightweight iron). Step after precarious step, I made my way into the privy and plopped -- fully pantied -- onto my poor potty. There perched, I pondered my predicament. I could not think how to remove my poop-filled unmentionables without befouling my bathroom or totally alienating my child. The solution finally came to me: cut each side and let the offensive garment drop into the toilet. Cecilia, though horrified and disgusted, came to my rescue and did the handiwork while commenting that I might need a diaper.

The bidet was no match for this atrocity. Very gingerly I stepped into the shower (note to self -- one of the grab bars needs to be tightened) and pulled out the big guns. Not for the first time was I grateful for my detachable shower head.

It's amazing how resourceful one can be under desperate circumstances.

I guess it's true -- shit happens.

End of story. Thank you for listening. Now, go to bed, and pray you do not feel a gurgle...

Clinic: 25 June 2010

I've waited too long and can't remember all of my stupid dream. I'm sorry but you will not be treated to a glimpse of my twisted inner self. Dodged a bullet there, didn't you?

Instead I'll give you a clinic report.

First, the obvious. I still have ALS and, also obvious, it's getting worse. No surprise there.

Second, despite all my efforts to maintain my pleasingly plump person, I lost 5 pounds. I was sure the nutritionist would say something but she did not, perhaps because she was leaving to catch a flight to Spain. My 5 pounds was not noteworthy -- to her -- but I was delighted. I always had to work hard to lose weight, so losing weight without trying is a whole new experience. I know, I know, it isn't necessarily a good thing but I am making lemonade today.

Third, my FVC dropped from 70% to 53%. (My first attempt actually measured a 48 but I always get a do-over.) (Captains log, star date July 1, 2010: received the follow-up report from clinic which indicates a measurement of 49%.) This reading surprised me; I expected it to drop but thought it would be in the low 60s, even high 50s. As expected, there was conversation about using a bi-pap (which I really do not want to do) and, after inquiry from Lynne, Dr. Bayat advised that an FVC of 20% was not life-sustaining. Lynne asks ridiculous questions. On the plus side my blood oxygen was 98%.

An abnormally high blood pressure reading was duly noted and, if the trend continues, blood pressure medication may be prescribed. I am so sick of medication, the thought of taking more makes me nuts. I would take up running again, but my heart is not in it. You're laughing, right? That is funny on so many levels, I am impressed with my own wit.

Next report to be issued at the end of September.

10 years

Well, I'm back. The car is restored to its previous glory, all for the low low price of $1740. Much has transpired here over the last six days, all of it way too fucked up to recount.

In the not-too-fucked-up side of things:

The race was a great success. I'm told there were approximately 100 runners, two of whom bear the surname McGee. Yes, Jenny ran her very first road race! It was a miserably hot afternoon but she never gave up and pushed through to the finish where her sister was waiting. One of my friends told me the best memory she has of the race is the look on my face when I saw my girls together at the finish line.

It delights me no end that my daughters are running -- are runners. Today, June 25, marks 10 years since I first put on a pair of running shoes and ran 2 miles to get my cardio so I could lift weights... after which I smoked a cigarette. Anyway, I am running vicariously through my daughters now, and enjoying every one of their successes.

I have pictures but cannot find an easy way to move them to the blog without having to save each one individually, a task I find onerous and frustrating. Please be patient.

The new power chair made its debut at the race. A donated portable ramp and a friend's truck allowed us to transport the chair, and I tootled around the boardwalk and the picnic site with a level of freedom I haven't enjoyed in a long time.

Naturally, when I got home I started looking for handicap vans. Craigslist had several vehicles in both Richmond and Washington; I found one in Annandale with low mileage and a lower price tag. Lynne and I are going to look at it on our way to clinic this morning. A friend of mine at the Honda dealership ran a Carfax report for me which indicates the car is "clean." (I can't help but be reminded of the movie Poltergeist, when the diminutive spiritualist leaves the poltergeist-ridden house and declares "this house is clean," only to be proven wrong when all the bodies buried underneath make their appearance.) In all seriousness, I'm sure the car is fine and I hope it works out because I would really love to check this off the list.

It's 8:30 AM so I need to get ready to leave. Coming up: my strange dream from last night as well as highlights from today's clinic.

Death of a mailbox

I've lived in this house for 21 years and today, for the very first time ever, I had a conversation with my next-door neighbor. We've never been introduced but he knows me and I know him because, after all, we've been neighbors for 21 years. Why this break in our mutually distant relationship? I had to apologize and offer reparation for his mailbox, which lay mutilated and very clearly dead not 50 feet from where we enjoyed our first meeting.

Daughter number three, newly licensed and eager to "get out of here," was going to venture to a shopping center this afternoon. Running little errands near the house wasn't enough -- she was ready for the big game. With my new, hideously expensive car insurance in place, I kissed her goodbye and hoped everyone would stay out of her way. From my vantage point in my bedroom I saw her get in the car and head toward a near by driveway so she could turn around. I waited. And waited. And waited. I thought perhaps I had missed her when all of a sudden she appeared in my room, gasping and crying, incoherent. She managed to tell me she'd hit one of our neighbors bushes; when I looked out the window and saw an impression of the inside passenger door handle on the exterior of the car, I wondered what the hell sort of bush she hit. After she moved the car into the driveway it was revealed that the bush was in fact a mailbox.

She loaded me into the transport chair and over we went to Mr. Campbell's. He was very kind and said reparation was not necessary, perhaps John could help him put up the new mailbox. We chatted for another few minutes and then left, stopping to view the corpse and pick up the passenger side mirror which had been amputated from the car.

It does not take a rocket scientist to figure out what happened -- this was a clear-cut case of inexpert backing up. My suggestion (actually insistence) that she practice her technique in the "wrecked" car was disregarded. I chuckled when she said the car needed to be repaired ASAP so she could go out Friday night "like a normal teenager." We will be lucky to get the car back in a week's time -- I'm fairly certain the passenger door will have to be replaced. Yes, it's that bad.

To say truth, I'm glad that, if something was going to happen, it was something like this where no one got hurt but a poor innocent mailbox. It will certainly be a learning experience for my headstrong and overconfident little miss. And trust me when I say she will not be going out until she has perfected the art of backing up.

Breathing easy

I haven't had THAT THING since November 2008, when I underwent THE PROCEDURE. Even though the most obvious physical manifestation has 99.99% disappeared I still "enjoy" some of the other lovelies, particularly CRAMPS. The past couple days I have been unhappily reminded that menopause has not yet been achieved because of the pain (PAIN) emanating from my internal girl parts. Here I am, four months away from my 52nd birthday, un-menopaused.

Another member of the household is on a similar schedule and she very unkindly shares her PAIN with me. It's a long story, one you've heard before, but the saying "misery loves company" must have been written with her mind. Little Miss Miserable was in full sharing mode last night and I was beginning to worry when relief arrived in the form of the big sister who suggested a sleep over. This idea was not immediately rejected (as were all the previous suggestions), in fact it was embraced and off she went.

So at 9 PM I found myself home alone. Everything I might need was near at hand on my new hospital table and I settled myself happily and comfortably in my new recliner. Life was good. I grabbed my laptop and was going to finish yesterday's entry when I started to choke. I don't know what happened -- I suspect when I inhaled I caught a little bit of saliva -- but it was the worst choking episode I've had in ages. It seemed to take forever before I could catch my breath, and even then they were short and insufficient. My breathing didn't return to normal for a good five or more minutes and I must confess that I was scared. The sounds I made didn't help -- like a 50-year three-pack-a-day smoker who struggles for every last bit of air. Very tentatively I took a few sips of water and finally regained some calm, but I was on high alert and it took some time before I was comfortable enough to rest my head on the back of the chair.

Guess what? After this little episode my cramps were gone. I think I'd prefer menopause.

Another new driver in the house

Rollator. Check.
Hospital table. Check.
Lift recliner. Check.
Loaner power chair, complete with Roho cushion. Check.

Thank you, ALS Association loan closet.

As I write, I am sitting in the recliner with my feet up, thanks to the handy little button next to my left hand. Pushing the button will also change the position of the chair to one more standing-friendly. This is well timed because I have trouble standing from all but a few seats in my house, including the storage bench at the foot of my bed where I have been doing quite a bit of sitting. The bench is relocating as the chair has achieved Most Favored Nation status.

The rollator -- a fancy walker with wheels and brakes -- gives me much needed balance for the little bit of walking I do; I can't work the brakes but I can rest my hands on the frame, which is sufficient for the moment.

Joe, the technician from MED, adjusted the power chair to my specifics so I will be comfortable until I'm able to order my own custom chair. I test drove it around the basement and managed fairly satisfactorily -- I need to divorce myself from thinking it's like a car, particularly when I go in reverse. I think it's funny I am having issues with reverse considering not long ago I wrote about someone else having a similar problem...

The purchase of an accessible van is now a higher priority -- since I have the damn chair, I may as well use it. Plunk, plunk, plunk.

Cushions,wedges, things on wheels...oy vey.

It's now 10 PM and I'm finally getting around to finishing this post. Lynne came over to get my dinner and do my hair and I showed her all my new equipment. She oohed and aahed over all the goodies, most especially over the power chair. While she was here we took it for a test run on my newly completed ramp (thank you Mark and unnamed large person). I successfully maneuvered the chair from the family room through the doorway into the serenity room, out the back door, up the ramp to the driveway. And then back again. I was feeling a little cocky and did not go slowly and carefully through the door back into the family room and took out a little chunk, but it's nothing a person like Mark or the unnamed large person can't easily repair.

We may do well to remove the door.

When I was testing the chair I felt a little self-conscious, like I was a wannabe ALS patient trying to fit in where I didn't really belong. Then it hit me -- as it does still quite often, right between the eyes -- that I do belong, I'm not a wannabe, and I am entering the next phase. The next "new normal."

Oh, Henry

One day, during one of our various phone calls, Adam and I were discussing Rose and how she cares for me. Adam asked me if Rose was thorough when she gave me a shower, and said it took a special sort of person to be a caregiver. We both laughed because neither one of us has the sort of fortitude required for that profession.

The first time I gave over and let Rose have the management of my shower I was a bit uncomfortable, but the positives outweighed my discomfort and I reveled in all my head to toe, fresh cleanliness. I did not shrink from her thoroughness, I was grateful for it.

Since the phone call, however, I have been like a stupid, giggly kid whenever Rose is being thorough. All I can think of is my conversation with Adam and our silly comments. Maybe I should take one of my little yellow pills before my shower...

Minority report

As I walked from the dining room to the stair glide this afternoon, I lost my balance. Silly me, I thought I could catch myself using my left arm. My inadequacies were made very apparent when my left arm slid OFF the arm of the couch and I fell ON the arm of the couch (a la train from Bayeux), looking rather like an ungainly Leaning Tower of Pisa (I was going to write Pis-ass, but doesn't it look awful?). Fortunately my ugly couch has almost as much stuffing as I do, so there were no bumps or bruises. Equally fortunate, John was nearby and was able to pull me to a standing position pretty quickly.

My balance has not been perfect for some time and, in recent weeks, seems to have gone south. My friendly and ever helpful patient services coordinator from the ALS Association, Ellen, is getting me some transitional equipment. I'm told I should hear something by Wednesday.

Anyway, I was walking to the stair glide because I was going to the Fredericksburg ALS support group meeting. (Before today I attended the Annandale group meetings, initially because they were on Sundays and did not conflict with my work schedule. I didn't go yesterday because Becky was up.) It was a good meeting led by a very knowledgeable and helpful woman who knows veterans issues inside out, which means nothing to me but I'm in the minority here. Not only was I the only non-veteran, I was also the only woman. The other women present were spouses of the ALS patients. As it happens I met one woman at a Pampered Chef party eons ago at the home of a mutual friend; another woman was one I've seen at Mass over the past 20 years. It just goes to show that Fredericksburg is a pretty small town. Considering how small it is, we have quite a lot of ALS here.

Update: some of my equipment is going to be DELIVERED tomorrow.

PT NUMBER TWO

Had a good session today. I have in hand another prescription for home PT which I may use sooner rather than later, but for the moment all is well.

Something to make you smile

Facing my fears

I accidentally pressed "turbo" when I meant to hit "feminine." This error was immediately corrected, my heart pounding as I fumbled for the proper button.

Having experienced a nanosecond of turbo, however, I am intrigued and may accidentally press the wrong button again...

Will you walk into my parlour?

Day six. I was going to write a post on day five but I fell asleep. I am such a lazy butt.

So, day six. For the past six days a little black spider has been living on a little white tile in the bathroom near the wall. He (she? it?) is there every time I go into the bathroom, exactly the same spot every time. Most of the time he just sits there, happily settled as I go about my business. Occasionally he gets spooked and disappears into the wall or crawls up toward the air vent, but returns in short order to the exact same place.

On day four I pointed him out to Jenny, who tried to catch him with a wad of tissue. He jumped and disappeared from sight. I was a little disappointed -- in a strange way I was becoming very much accustomed to his presence. He returned later in the evening to my great delight. We respect each other's space and I figure if he is on the little white tile he is nowhere near my bed -- even though the "you eat spiders in your sleep" story is a myth, there is still a little fear hiding somewhere in my brain.

I don't know what sort of spider it is but I know what it is NOT, and it is not a brown recluse or a black widow. If he were either one of those this would be a different sort of entry.

Slight change of plans

I am having lunch with an old friend today. We commuted together via bus as well as carpool for almost 20 years. Bil also influenced my early running, for which he earned the moniker "Evil Bil" or EB (pronounced "eeb”) because I tried so hard to keep up with him I overdid it. Of course he was to blame, I would take no responsibility for my own poor judgment.

So anyway, I'm having lunch with him today. Because of the timing I asked if he could take me to my physical therapy appointment afterward, and he kindly agreed.

When I got up this morning and visited my lovely bidet, it occurred to me I would not be able to go several hours without a visit to a bathroom, especially after having lunch out. I'm to the point where I need assistance, nearby if not directly. I may have known Bil for a very long time but he is not a potty pal. Consequently, I will come home directly lunch is over and, once the warm air dry is turned off, will head out to PT feeling lighthearted and, more importantly, light-bladdered.

I need a vacation.

The morning started off like all the other mornings since May 17: up early watch the news, have breakfast, etc.

I was expecting Tam later in the day for a visit and to begin my organization project. For some reason I thought she was coming later but she reminded me with her phone call that she was coming over early and was bringing bagels. She arrived just before 10 and made me the best bagel with lox and cream cheese that I've had in a long, long time. A bonus: duck bacon! It was delicious.

After we ate we set to work on one pile of papers I brought back from the office as well as a box that had been in the trunk of my car. A small start but very productive and I was pleased with how much we accomplished.

Not long after Tam left

Ellen Cochran arrived. (Do you like the revolving door?) Ellen gave me a chicken. Yes, a chicken. An adorable, stuffed chicken who clearly has worse hair then mine. It is going to be one of my mascots. We had a nice visit, discussed several of the items on my wish list, and talked about my Social Security disability benefits. The time flew and before we knew it it was past 3:30 PM and she had to run off to another appointment.

As she was leaving

my friend Tiffany arrived, bringing with her a delicious jamocha milkshake from Arby's. (Yes, it's a revolving door theme. Clever, isn't it?) I met Tiffany when I was training for the 2008 New York City Marathon so she did not know me when I was the fastest girl in town (that one is for you, Tam). Tiffany is a natural runner and very speedy but has had some problems with her foot. Barring a couple of exceptions in February, she has not run for a year. She's hopeful she'll be back on the road soon, however, and then everyone better watch out.

We had a very nice visit and then away she went to her appointment.

No one came in the door but Cecilia and I went out so she could practice parking. There were bright spots and there were not so bright spots; the relationship between steering wheel and tire while going in reverse needs to be more closely examined. I wrote her driving instructor and asked that he focus a bit more on this technique.

Jenny arrived when we returned and shuttled Cecilia off to a homework project collaboration.

No one came to the house but I had a 6 PM telephone interview with the company providing my long term disability benefits. Unfortunately, she did not call until 6:30 PM, at which time

Grace arrived to make my dinner and do my hair. Since the interview was estimated to take approximately 30 minutes I rescheduled for the next day. I couldn't ask Grace to wait that long.

Grace left at 8 PM. I settled myself in front of the TV and watched the news and waited for Jenny and Cecilia. It was quiet and very restful.

I'm tuckered out. Sweet dreams.

Cornhole

Becky came up with an idea a few months ago: a cornhole tournament to raise money for the ALS Association. With the help of her fiancé (smile) and their roommate, as well as other friends, they put together a great event this past Saturday. Her roommate's father provided the venue -- a sprawling piece of land near Richmond complete with pool -- and her friends provided a number of cornhole boards.

I don't know how many people were there but it was a great party. I know they emptied the keg (imagine that) because it was floating on top of the melted ice. Becky found some 2 foot long straws at the grocery store and bought them for me; they were perfect for drinking beer AND water because I did not have to lift any bottles. I'm sure all Becky's friend got a real kick out of that.

There was quite a bit of competition during the tournament -- some of those players were unbelievable. I played a few times several years ago but I don't have an arm or a very good aim so my bags slid off the board if they made it at all. One young woman was bemoaning her terrible cornhole ability so I offered to play opposite her to make her feel better. My offer was rejected. Thank heaven.

I got there at 1 PM and did not leave until after 7 PM. It was a hot day that had threatened rain, but the cornhole gods kept any bad weather at bay. Despite the heat (and the late afternoon flies) I stayed outdoors, very much enjoying all the activity.

Becky was very pleased with how much money was raised and with how much fun everyone seemed to have. She did a wonderful job.

(I have purposely avoided any reference to the urban dictionary definition of cornhole, but I did hear from a couple people who wanted to make sure I knew it was not just the name of a game. To be perfectly honest, when I first heard of this game I was scandalized at its name but I've gotten over it. Imagine, me scandalized at anything.)

She's a keeper

Last night (Thursday) Rose came at 4 PM instead of 6 PM because she wanted to do some personal things later in the evening. She was just about to wash my hair when the power went out.

A power outage at my house means more than no lights -- it also means no water. I am on a well so no power means no pump means no water.

Cecilia was taking a shower. Thank goodness she was in the rinsing stage so she was not too terribly put out (about the water -- more later on WiFi).

I called the power company to report the outage and was told power might not be restored for several hours. Groan. So much for my shower and clean hair.

Rose, who has been concerned about my swollen feet, went to work on some stretching and range of motion exercises on my legs and feet. Finally satisfied with the results of her work, she settled me in the big ugly chair in the living room and made me put my feet up.

Cecilia started grumbling because there was no WiFi, growled something about wanting capris and could she rip up a pair of jeans. She went back into her room, growling and ripping. Hmmmm.

Since we were unable to cook, my dinner consisted of some chicken salad sprinkled with dried cranberries (a particular favorite). Situated as I was in the big ugly chair I was not able to hold the plate so my very kind Rose fed me.

I called the power company to get an update on restoration and was told possibly 9 PM. Groan.

Rose asked if we had any candles and I was embarrassed to tell her I did not know. Since Cecilia was by this time asleep, Rose went out to buy some candles. Just before she returned the power was restored. It was 8 PM. I told her to go, that I would manage just fine, but she would have none of it. She insisted on staying.

At 10 PM -- having washed my hair and given me a shower -- she declared that her job was done and, making sure I had my feet up, finally went home. She is really something else.

Plunk, plunk, plunk

Shopping/wish list:

64 GB iPad
Gel seat cushions
Hospital style rolling table for my laptop etc.
Rollator, to use in the house until I commit to a
Power wheelchair, which will require a
Vehicle to haul above-referenced power wheelchair, and
Ramp from driveway to patio door
Lift recliner (maybe two of these)

The power chair, vehicle, and ramp will take quite a bit of planning and I have to make sure I have a good grip on my finances before I commit to another vehicle loan.

The cushions and table can be gotten fairly simply, as can the iPad. It's just a matter of purchasing them.

The rollator may be borrowed from the loan closet. I have a request in already for a lift recliner.

This list just keeps getting longer and longer.

More on the Louise theme

This is me when I get cold

I was watching Seinfeld the other night and saw this. I apologize for the poor quality but I think it still manages to convey what happens to me when I get cold.

Enjoy.

My doctor said 12 months*...

I have taken an accelerated death benefit on some life insurance (I've written about this before). Having been cautioned about the possible tax consequences of taking this benefit, I did some research and found the following on the IRS website, to wit:

Exclusion for terminal illness. Accelerated death benefits are fully excludable if the insured is a terminally ill individual. This is a person who has been certified by a physician as having an illness or physical condition that can reasonably be expected to result in death within 24 months from the date of the certification.

Lovely. One less thing to worry about.

*Remember: My neurologist had to state that I am not expected to live longer than 12 months. I don't have to die quite that soon.

June brought...

An FRS of 26 and a yellow trunk, attributable to my breathing. My head, thankfully, is still green.

Picture of the day

Memorial Day 2010

The alarm went off at 5 AM and John got me out of bed. I performed my morning ablutions, put on some makeup, leaned my left elbow on my dresser then ran the fingers of my left hand through my hair, and made my way down the hall and into the dining room where I sat at my computer and waited for Lynne. That most worthy gentlewoman arrived at 6 AM as planned whereupon she loaded the wheelchair and the wheelchair's user into her vehicle and off we went to the Memorial Day 10K race in downtown Fredericksburg.

I have not been to a race in a very long time, primarily because I could not (would not) get my lazy butt out of bed AND because of the weather/temperature. These days I am so well rested and the temperature is so ALS-friendly that, when Lynne said she was running the race, I asked if she would bring me along. As you can tell from the first paragraph, she did.

Comfortably situated in the wheelchair, we rolled over to the public library where Lynne registered for the race. While she was inside I waited in the courtyard and watched all the runners as they went to and fro; I'd be lying if I said I didn't feel pangs of envy and anger but they passed --eventually. Registered, Lynne came out and said she had to go to her car to get her shoes. Pushing me along would have slowed her down so I stayed put while she ran off. At this point a few women came over to talk -- I didn't know any of them very well so the conversation was short. I was grateful when yet another woman walked up, one I do know well and with whom I ran quite a lot before Lynne and I became marathon and running partners. She and I struck up a conversation about an upcoming get-together, I told her all about Becky's engagement, I thanked her for the stair glide she'd given me, etc. etc. By this time Lynne had returned but, true to form, she had to make a Porta John stop. Jannette offered to push me to the finish while Lynne waited in line. Once settled, Jannette hurried off to the start. Lynne left her keys and her water bottle with me and off she went as well.

The race started and, while I was waiting, I encountered several other people I knew and had nice chats with all of them. More than once people commented on how hot the temperature was and how dreadful it must be to be racing -- the pangs of envy I felt earlier were nowhere to be found! I never was a hot weather runner and I was actually glad of my stupid wheelchair for giving me an excuse not to have to run. Wait, that's too extreme. I am never glad of my stupid wheelchair. ANYWAY, it was hot and I was glad I was not running.

Lynne finished, declaring loudly that it was hot and she needed to lose 5 pounds (she doesn't). Still amazingly strong after having pushed through miserable temperatures, she rolled me over to the library parking lot where there were a beer truck and after race snacks. Even though I did not race I still partook of a post-race beverage and a bagel -- after all, I had not yet had my breakfast and what better breakfast is there? As I did not think to bring a straw, drinking the beer was a little sketchy but I managed to acquit myself well. Not long after, Jannette made her way over knowing that we would be found at the beer truck. I do have a reputation, don't I?

Jannette told me that, as she ran, she was thinking of a way I might be able to experience running and racing one more time. She asked how I would feel if a group ran together and took turns pushing me in my chair. I answer that I would love to do something like that but my chair was not very road friendly. Undeterred, Jannette stated she would look for a roadworthy wheelchair and would put together a group. I have to tell you -- if my friends were to pull off something like this, allowing me to be part of a race with the women who taught me how to love the sport, I would be deliriously happy. I don't know if it will ever come together, but just knowing my friends would want to do that is enough.

Maybe I need to lose 5 pounds before this happens. One does not want one's friends to regret an act of kindness...

Lynne brought me home and got me settled with my morning meds and coffee before she took off, promising to see me Wednesday (her "share the care" day). Not for the first time I thought to myself how very, very lucky I am to have her as a friend.

I hope everyone had as lovely a Memorial Day weekend as did I. Let's see what June brings.

There is going to be a wedding

Not quite two weeks ago I was sitting in the serenity room working while on the phone with Mel. From the window I saw Harley, Becky and John's Norwegian elkhound, followed by John Wallace. I rang off with Mel and waited to see Becky, but she was not in attendance. I thought it was quite curious and, when John, John Wallace and Harley came downstairs, I exclaimed at the nice surprise. I asked John W. if he just happened to be in Fredericksburg and he told me no. He sat down and the three of us engaged in some small talk for a few minutes and then my daughter's boyfriend said that he, while not always very traditional, wanted to be traditional at this time and asked us for permission to marry our daughter. My mouth is not big enough to support the smile that was trying to break around my face. John is a good man and he loves my daughter. And my daughter loves him. Naturally he received permission.

They went to New England on vacation the Saturday before last and came back today, stopping at our house around 2 PM. From my room I could see Becky walking toward the house with her left hand hidden behind her back. Jenny was helping me post-shower and made me sit down so I wouldn't fall. When Becky came into my room she, Jenny, and I were typical silly girls, laughing and crying and oohing and aahing over her perfectly exquisite diamond ring. Becky did not know that John came to see us before their vacation and was misty eyed when she heard the story.

Becky does not wear jewelry. Never has. Does not even have pierced ears. She seems a different person with this ring on her finger -- it's as though her hand grew up and the rest of her along with it.

One of the items on my bucket list was to gather my sister and niece, Lynne and her daughter, all three of my daughters, several bottles of champagne, some caviar and other treats, and head to a bridal salon where I would sit, sipping champagne, while all the young girls tried on bridal gowns. I wanted to make sure I saw my girls in wedding dresses before I died. We are still going to have our salon party, but now we will actually buy a dress.

Happy sighs...

Bi-two-det

At long last.

Electrician Mike very creditably installed both BTSes, one upstairs and one downstairs. Due to the age of the house and the need for a dedicated circuit for each BTS, there was a little bit of work to be done and he did it. (Insert name) the plumber was not available but explained what needed to be done, and Mike took care of that, too.

The website gives one the impression that installation is simple and not very time-consuming; in fact, it says installation only takes an hour. Poor Mike started the work yesterday and did not finish until today, so Jenny renamed the BTS the "bi-two-det."

The new equipment has been tested and not found wanting. I have yet to test every function, but a newfound patience has come over me and I'm willing to wait... I don't want my gratification to be too immediate.

The heated seat is most pleasant. The warm air dry is similarly delightful. What happens from the time you sit on the heated seat to the time the warm air dryer shuts off is, uh, is, well, it's lovely. Lovely, lovely, lovely.

One is cautioned about using the "turbo" setting -- apparently this function is only to be used by the most stalwart individuals or by those who have help waiting nearby. It is doubtful that the "turbo" button will be pushed anytime soon. I frighten easily (ask me sometime about the TV show I watched as a child that scared me away from drugs) so will heed the "turbo" warning.

And so, faithful readers, this ends the way-too-drawn out nonsense about my potty. Unless, of course, I accidentally hit the wrong button.

PO'd

The absolute worst thing about this idiot disease is wanting something to be done and having to wait for others to do it. I'm not just talking about the BTS, I'm talking about everything.

It's pointless to say this but I'm going to anyway: I wish I could do things for myself, the way I used to. Yeah, I know, if wishes were horses...

But it pisses me the fuck off that I cannot.

(Clarification: I am not angry at others, I am angry at my inability to do for myself.)

My little yellow friend

Just for the record, today was a klonopin day.

This topic is getting old

My watched POT may begin to BOIL tomorrow. Electrician Mike and his friend (insert name) the plumber are coming over to HOOK THINGS UP. Check back for an update.

I'll even pay for your ticket

I have decided to take a day off tomorrow -- without pay. Oh my gosh, I do crack myself up.

But seriously. It's the Friday before a three-day weekend and I am permitting myself a day away from work. I scheduled a hair appointment after which I may go to lunch. What I would like to do after that is catch a plane to my beloved France. My passport is near at hand and I can pack very lightly and very quickly. All I need is someone to go with.

Sigh. That's how it was supposed to be.

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

Jenny knows an electrician who kindly came over and looked at my more-complicated-than-I-thought bidet toilet seats (BTS). It turns out I need a little bit of electrical work done in order to install them safely. He explained what was needed and why in his technical electrician's jargon which I heard as "blah blah blah blah electrocuted blah blah blah dedicated connection blah blah blah." Whatever. I just want to get it done. I'm glad he knows what he's doing because clearly we need an expert.

Mike is a good guy and said he was very happy to have the opportunity to help us. That was nice. What will be really nice will be a working BTS.

Call me Audrey 3

You knew this was coming, didn't you? After the last post, all I could think of was "Feed me!"

Pin pointing

A year ago I could still run (sort of) and I could definitely walk. I could shower by myself and cook and do laundry and manipulate papers and raise my arms over my head and so on and so forth. Yes, I was slower and had difficulty, but I managed.

The change that occurred in the ensuing year was gradual but significant. I wish I could pinpoint when each activity demanded a little adjustment but I can't.

I was also able to feed myself. Nowadays, I am able to feed myself with my left hand IF I use my special fork (similar to the one at the bottom of this picture) or a serving spoon with blue foam tubing around the handle. I receive assistance on occasion with things like soup and salad. Holding the utensil is not the only challenge; lifting the utensil to my mouth is also problematic. There are a couple of workarounds: I lower my head to meet the fork/spoon or I support my left elbow on the table to elevate my hand. These adaptations work -- for now.

I guess this post is to pinpoint an adjustment because, as I was eating my breakfast this morning, I looked down the road to when I won't be able to do that activity anymore.

Maybe I will lose some weight and then I will just be ALS Bowbie.

I'm such a doll

When Becky was a little girl she played with Barbies -- she really played with Barbies. She had rather a collection and would dress them up, arrange them all around the family room and play and play. She had a little bit of a speech impediment at this stage (six or seven years old) and when she said "Barbie" it sounded more like "Bowbie." Speech therapy and maturity corrected her pronunciation and, as happens with all little girls, the Barbies lost their appeal.

When Cecilia discovered the dolls she played with them, too. Instead of dressing them up, however, she removed all their clothes as well as their heads. The family room was littered with naked, decapitated Barbies. Fortunately, Pokémon entered the scene and we were able to remove all traces of Barbie carnage.

I am bringing this up because I'm not able to dress myself anymore. I feel like a Becky-era Bowbie -- a fat, ALS Bowbie.

The anecdote about Cecilia is just plain funny. At least it is funny to me. I had to turn my microphone off a couple times while I was dictating because I was laughing so hard at the recollection.

Still ticking

By now I hoped to be able to report on the efficiency of my latest acquisition. Sadly, I am still waiting due to plumbing and electrical complexities. Soon. Soon. Just not soon enough...

They have arrived

Now. I must wait. For installation. I am trying to distract myself. By writing. Short sentences.

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

I do not want to anger the meltdown gods but I will report that so far, so good with you-know-who.

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

I dreamt last night that I was gasping. I woke up, gasping. My dream upset me. The question is was I gasping because I was upset or was I upset because I was gasping? Either way, it's a hell of a way to wake up.

Oh, and my toes/calves/quads were cramping. Sometimes my legs seem to stretch involuntarily and, when they do, they cramp. This. Totally. Sucks.

Yes. Back to. Short sentences. Time to. Say. Goodbye.

Update

At 12:51 AM my bidet toilet seats reached Laurel, Maryland.

Bon bon dimanche

My goodness. If I'd known that retirement was going to be full of wonderful outings and delicious food, I wouldn't have waited so long.

Quite some time has passed since my sister and I visited our mother's grave in Winchester, so we made plans to go out there today. After the visit, we'd get lunch then come back to my house. It sounds simple but there is a lot of driving involved; Wendy lives in Herndon which is a 90 minute drive from Fredericksburg, and Winchester is another two hours northwest. Bless my sister's heart -- seven hours of driving, not including the drive to the cemetery.

To get to Winchester from my house you take Route 17 North the entire way. Once you get out of Stafford County there is a lot of farmland, horse pastures, rolling hills -- it's all very scenic and pastoral (that is the second time I've used that word in as many posts). The scenery changes slightly as you approach Warrenton, but soon you are back on a two lane highway peppered with signs for the various wineries in the area as well as signs identifying the very stately homes that sit on top of hills and in the valleys.

About 30 miles outside Winchester you come upon the village of Paris, which is nestled in a little valley near the foot of the Blue Ridge. I always thought it was charming and remote, and of course I love the name. As Wendy and I neared Paris I asked if she wanted to drive through the village since she'd never seen it. A quick left turn later and there we were. It is so tiny and sweet -- difficult to imagine it is so close to Washington DC. One of the gems this village boasts is The Ashby Inn and Restaurant, a place I have always wanted to visit. As we drove past we thought it might be nice to see if they were serving lunch so Wendy parked the car and did some recon. When she returned she was giddy with delight -- it was exactly the kind of place she hoped we would find. Out came the wheelchair, then out came I, and up the walk we went. I was very discouraged when we reached the building because there was a flight of stone steps that had to be navigated. Correction: a stone step. A portable ramp had been put down over most of the steps, leaving just the bottom unramped. We were told not to worry, three strong, able-bodied young men would lift me over this step. Naturally I started to laugh and, when they picked me up, I closed my eyes so I would not see what was happening. I will admit to enjoying the hell out of this experience because I felt like I was floating. I couldn't speak because I was laughing and I laughed even harder when we came upon a second -- and then a third -- set of steps. Each time I closed my eyes and each time I experienced the awesomeness of floating.

After visiting the not-very-handicapped-friendly bathroom, we made our way into the dining area, more like a sun room. The colors were bright and cheerful and the windows looked out onto the garden and a very beautifully manicured Dogwood tree. My sister was in raptures, as was I. We were glad of the intermittent rain because it enhanced the green of the garden and kept the sun room from being too warm.

The menu for brunch was unbelievable. For the first course Wendy got the crab and fennel soup with mussels and I got eggs Benedict. Wendy's soup was so amazingly delicious. I have never had a crab soup like it before and doubt I will again. It is something I could eat every single day without tiring of it. My eggs Benedict was equally as delicious, but this soup was unparalleled.

A group of elderly Southern gentility came into the sun room just as we finished this course. They were discussing the menu and wondered aloud about the soup. Being the nosy buttinsky we all know I am, I offered my opinion and told them they could not go wrong if they ordered it. I overheard the gentleman closest to us say, after he finished, that he wished he had a straw so he could get up every last drop. That was not unlike what Wendy said when she finished, only she wanted to lick the bowl instead.

Course number two brought Wendy chicken and waffles (I know!) and I had the shrimp and ham omelette (today was clearly egg day for me). Once again, both were outrageously tasty but the combination of chicken and waffles was unexpected and totally fabulous. When Wendy offered me a third bite, I politely declined. When she insisted, however, I opened my mouth like a baby bird and inhaled it just as greedily. Shameless.

Dessert consisted of Monocacy Crottin cheese with tangerine, rosemary, and crumble. The sharp cheese with the tangy fruit was mouthwatering.

When it was time to leave the three strongmen came to our aid once again; once again I was rendered speechless because I was laughing so hard as I floated -- eyes closed -- down the stairs.

From there we continued on our way to our mother's grave. Unfortunately she is buried in a spot too far for me to get to on foot and my transport chair is not cut out for cross country hikes. I waited in the car while Wendy deposited two roses in the vase. She stood there for a few moments then came back to the car and off we went. It was sad leaving... Mom was alone so much of her life, and she chose a cemetery so far away from us. Just very sad.

The ride home was quiet because of our visit as well as our full tummies. We detoured through Paris and waved at the Inn, then drove on. When we got back to the house, my sister took charge and got me settled before she went on her way.

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

This time spent with my sister was important and very meaningful. We talked quite a bit about THINGS and I am relieved to know she understands me. I was impressed with her ability to maneuver me in and out and around, considering she's not had to do so before. My sister is very strong... in many ways.

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

Well, what's on the schedule for next week? The bar has been raised pretty high. I am accepting any and all invitations...

My busy life

I've not posted for a few days due to a whirlwind of activity.

When I decided May 15 would be my last day of employment, my friend Tam e-mailed me with an invitation to lunch on May 20. The destination was the Inn at Kelly's Ford, which is out in the middle of nowhere (Remington Virginia) and is an equestrian center/bed and breakfast/banquet facility. It's really lovely. The dining facility is not open for lunch so we ate at Pelham's Pub.

In order to get to the pub I was transported via golf cart. The driver asked if I wanted to take the scenic route. I'm glad I said yes because the grounds are beautiful, very picturesque and serene. The terrain was rather bumpy and our driver, securely holding his steering wheel, took the bumps and the curves a little faster than I considered prudent. Thank heaven Tam was holding onto me because I'm sure I would have been thrown when we went over a few of the bigger bumps. I felt very vulnerable.

We arrived at the pub in one piece and sat out on the patio. It was a beautiful day, the first time the sun had made an appearance in several days. We looked out over the lake and the woods, the rolling hills, and caught sight of geese and a few horses -- all very pastoral.

For lunch I ordered a mushroom Swiss burger and a cup of potato and leek soup. The soup was homemade and incredibly tasty and I was able to enjoy it because Tam held the spoon and, later, the cup. The burger was one of the best I've had. Tam ordered the soup and a crabcake sandwich. While we were eating I was stung by a bee -- fortunately I am not allergic and, after I put ice on it, I was fine. Naturally we ordered dessert, some very delicious profiteroles. The pastry was perfectly fluffy and delicate, very much like the profiteroles I've had overseas.

After we got home I was exhausted from the day's excitement and took a 90 minute nap. There are some advantages to being retired.

Years ago I heard from a friend about the curative powers of bee stings on arthritis. That night I dreamt I was stung and it cured my ALS. I was heartbroken when I woke up.

Friday I had another lunch date, this time with my darling Adam. He drove all the way from Hyattsville to take me out. He called me from the road just after he passed the mixing bowl and wondered how the traffic was on the HOV. My trusty MacBook and I went to the traffic cameras site to guide him and, since we're totally ridiculous, I tried to track his progress from camera to camera. On several occasions I actually did see his Ford Explorer as it went by. We are so dumb.

I don't remember what time he arrived -- I think it was just before 1 PM. His car is higher than I anticipated and I had trouble getting in to the passenger seat. John brought out a footstool which helped a little, but I still had difficulty. No nonsense Adam took matters into his own hands -- literally. He bent over and, as I was leaning against the seat, lifted my legs and put them in the car. I was laughing so hard I couldn't speak. He pushed my butt into place and buckled my seatbelt. Satisfied with his efforts, he put the footstool in the car next to the wheelchair and away we went.

When we got to downtown Fredericksburg, Adam parked and got out the chair. Exiting the vehicle was much easier than entering -- I just had to slide my legs around and slip onto the curb. I settled myself into the wheelchair and we went toward the restaurant I had selected. Which was closed. Fortunately I had a backup plan so we crossed the street and went to the restaurant where I had enjoyed my Mother's Day lunch. There was a lovely young woman sitting at the bar reading a newspaper and I asked her if she would like to join us. It was Jenny. She had stopped to have lunch and visit her best friend who works at the restaurant. Jenny's presence solved a potential problem as I was determined not to ask dear Adam to help me in the bathroom. As it turned out it was not even an issue, but it was nice to have Jenny nearby just in case.

After lunch (Bellinis and pâté and salad; I was ably assisted by Jenny) we headed back to the car where Adam repeated his grand feat of strength, once again rendering me speechless and breathless.

Considering the age difference (20 years) and the vast differences in our lifestyles, I am often amazed at our friendship. There is a connection we share, however, that doesn't care about such unimportant things. He is truly a bright spot in my life.

Last night I dreamt again. This time I was aware that I had ALS but I could still run. I did not run for long in my dream but enough that I was able to remember it. Once again, I woke up and was sad. I wonder if I will ever get over that.

Today -- Saturday -- is quiet. It's going to rain so it is overcast and a little cool outside. Perfect conditions for an afternoon nap. I wonder if I will dream.

Sunday I am going with my sister to Winchester. We will visit our mother's grave and have lunch, then come back to Fredericksburg for a little visit. I hope the weather cooperates.

***********

Still waiting for the bidet toilet seats. My impatience is as finely tuned as ever.

Tick, tick, tick...

Now that I've clicked on the purchase button I am impatient for delivery. I'm counting the hours until my new bidet toilet seats (yes, plural) are delivered and installed and ready for practical application.


Check out the control panel. Sort of takes your breath away, doesn't it?



As a bonus I am getting two travel bidets which are hand-held and have three different nozzles. Just imagine!

Here's hoping

The teenager who came home an hour ago was smiling and sweet. She reported that she'd had a wonderful night's sleep and felt fantastic. I hope this is the beginning of a positive trend.

Thank you to all my friends for their words of encouragement -- and caution -- where this new drug is concerned. I have resisted medication for a reason but I am hopeful our (mine and Cecilia's) combined management will result in success.

Trying something different

There is a new pharmaceutical in my house: Seroquel. It is being used as an anti-anxiety/antidepressant -- not by me, but by Cecilia. In the past couple months her "episodes" have become more intense and physically violent. Her fury is directed toward me (or anyone who stands between us). This does not happen frequently, but it does happen. Yesterday, after a particularly unnerving Monday night, she saw a psychiatrist. And now we have a bottle of Seroquel.

When Cecilia was about two years old the tantrums began. In kindergarten her behavior prompted a visit to a child development center where they decreed she had ADHD and prescribed Ritalin. I knew ADHD was not the correct diagnosis and I refused to give her a drug just to satisfy her teachers. At nine years old she was diagnosed with Asperger's -- we finally knew what we were dealing with. As she matured her meltdowns continued but seemed to have plateaued (maybe I was just getting used to them). In the last couple of years, however, things are worse. She says things that cannot be ignored, hence the attempts at therapy. And now, most recently, they can be physical. Under these circumstances my long-held resistance against medication has crumbled and I do think she would benefit -- we all would benefit -- from a little help.

The poor thing has so much on her and I wish I could make it better.

I do not excuse her behavior. In lucid moments we discuss her accountability and ways she can improve; this has worked in the past to a certain degree. It takes time, however, and these meltdowns are different from those of three or four years ago.

Today will be day number two with our magic little pill. Let's hope for the best.

The government in action

It's raining and it's cold and I forgot the file so we had to turn around. We left the house one minute before the appointment was due to start so I called to tell them I was running late and got put on perpetual hold. I was on hold the entire drive down I-95 and was still on hold at the light to turn into the office park. Just before the light changed a call came in from Social Security asking where I was so I told them I would be there in two minutes and rang off. A moment later another call came from Social Security... I was still on hold and had never terminated the call.

Once inside I met with a Very Nice Young Woman who recently celebrated one year with Social Security. Before we got started I made sure to stress that my illness qualifies me for "fast-track" processing because I have what is called a "presumptive disability." VNYW told me presumptive disabilities only apply to SSI/welfare claims. She did not use the phrase "fast-track" but did use the word "expedite." I elected to smile and nod and follow up with Ellen after-the-fact because I did not want to piss off a bureaucrat who held my application in her hands. I answered every question and provided hard copy documentation which VNYW reviewed and included in my file. At the conclusion of our interview VNYW explained the very soonest I would get a check would be December 2010 because it would take five months IF I am approved and that I would not receive any benefit for May or any of the months that pass while I am waiting. This was contrary to what I had been told and I questioned her. VNYW patiently explained that I had heard incorrectly. Once again, rather than anger Mme. Bureaucrat, I nodded in understanding. We parted amicably and I told her I would call in the next several weeks to inquire after the status of my claim.

When I got in the car I immediately called Ellen and told her the whole. She is going to call VNYW in a day or so and ensure my application is being processed properly. Ellen assures me I will in fact be paid from the date of my disability (today) and that I do indeed have a presumptive disability. It's a lot of red tape and I'm very pleased Ellen is acting as my advocate in this matter. I was so tired when I left I could barely eat a bonbon.

Retirement: Day one

I'm up, I'm fed, just need to get dressed. The new walr-ass friendly cushion is in the wheelchair. The paperwork is organized. Off to Social Security we go.

Un autre dimanche

Lynne will be here in an hour. My suitcase is ready. No, no wonderful getaway -- the suitcase is empty. We are going to my office to pack all my personal belongings to bring back home. I decided a suitcase was more efficient because, in addition to various papers, pictures, cards and the like, there are shoes and scarves and my big faux leopard coat. Thinking about it now, I wonder if the suitcase will be big enough.

Most importantly I need to bring home all my little treasures, petits objets d'art received as gifts over the years. These beauties will be placed strategically around the serenity room, making it even more inviting.

Later today, Jenny and Becky are going to assist in gathering all the paperwork I will need for tomorrow morning's appointment at the Social Security office.

I have rather a full day, don't you think?

Jotting...

I rather enjoy the way my feet feel, dangling in mid-air, as I ride up and down my stair glides.

When I walk, I feel like I am at mile 28 of a marathon. Yes, I know a marathon is 26.2 miles. That's my point.

9:45 AM Monday. Social Security. Starting the process.

It's after 5 PM and I am still working a little bit. I do not retire well.

Ugh

No gory details, because one can't bear to recount how awful horrible disgusting humiliating was the scene at 12:30 AM.

One did not make it in time. One apologized profusely to one's husband when he got home from work at 1:47 AM. One was exceedingly grateful for the surgical gloves purchased by Rose.

One hates ALS.

One hurdle cleared

I received word today that Rose is acceptable to the first of my long-term care providers. Starting tomorrow she will come two times a week.

It's a start.