33%

I saw my pulmonologist on Monday for my quarterly checkup. In the early days  of my disease these visits made me very anxious; I started out with an FVC of 104% and hated each time the number dropped. In June, when it dropped from 70% to 49%, I wasn't anxious anymore.  Rather, I pretty much expected it. When I went to the doctor on Monday I also expected a drop but I have to confess I didn't think it would be such a big one.

My doctor asked me if I had considered a peg (feeding tube). I shook my head because I do not intend to use one at all; I am still chewing and swallowing quite well. She then asked me if I wanted to order a bi-pap. I told her I didn't want one, which led to a discussion about the function of the machine. It is not intended to prolong, it is intended to provide comfort -- making breathing a little easier. I agreed to try one.

The bi-pap technician came to the house on Tuesday and fitted me for a full face mask. The first time I put it on I thought I would suffocate; I was claustrophobic and very distressed. Subsequent attempts were more successful and I managed to wear the mask for several minutes before I signaled it was time to stop.

When Lisa came that night, we tried again as we were doing range of motion exercises. After putting the  mask on me, Lisa positioned me on my bed. I chanced to look in the hallway and saw Cecilia; frantically I signaled to Lisa to shut the door so my daughter would not see. Doors shut, Lisa proceeded to do my exercises while I did my best to adapt to my newest gift from Louise. I tried to relax, to get into a rhythm, but it did not work.

I'll try again but I think I will send the machine back. The only thing I will ever suffer through in spite of discomfort is a beautiful pair of shoes.

Dentalk

I don't know how long I will be able to brush my teeth by myself, but I'm going to hold out for as long as I can.

My current toothbrush is a battery-powered Crest spin-Pro (or something like that); I like it because all the bristles move and the handle is big enough for me to hold. Unfortunately, the casing is very smooth and, as my left hand grip weakens, it is hard to hold.  As of today I will use a new Oral-B toothbrush that has all the attributes of the other brush but has a chunkier handle, to wit:

Jenny informs me the character on my new toothbrush is none other than Wall-E of Pixar fame. I don't know anything about him but if he makes toothbrushing an independent activity I am his biggest fan.

Since we are on the subject, let me describe this independent activity to you. Seated in the bathroom (yes, I multitask), my caregiver places a hand towel on my lap. A dab of toothpaste is applied to the brush; the brush is then placed in my left hand at an angle which allows me to start brushing on the right side. The bristles go in my mouth and my caregiver turns on the toothbrush then exits to give me some privacy. Holding the tooth brush with my left hand and pushing a little with my right, I clean the outside   teeth on the right, back to front. To switch to the other side I hold the toothbrush with my front teeth while I switch hands, then I clean the outside of the left. Keeping my hands  in this position I then move to the lower right side, this time front to back. A quarter turn of the brush (while holding it steady with my teeth)  and I can brush the top right, back to front. Another shift and the top left is attended to, and a final quarter turn brings me to the bottom left. I spend an extra few minutes revisiting the front teeth before I put the toothbrush on the towel in my lap.

I love brushing my teeth.

Weekend update

 How was your weekend? I hope it was restful and enjoyable. Mine was an adventure.

After purchasing the wheelchair-friendly van, Adam, Lynne, Ricardo and I decided to go on a road trip. Our destination: New York City! Award points  would pay for our room at the Hyatt, reservations were made for Top of the Rock, and we would take a ride on the Staten Island ferry. Several days before the trip, however, a situation arose which required an adjustment to the plans. Bethesda was now the hotel destination, and Baltimore the fun day activity location. The Top of the Rock was replaced  by the World Trade Center of Baltimore observation deck, and the Staten Island ferry  was   replaced  by the Spirit of Baltimore lunch cruise (complete with singing waitstaff). My power chair got me around just as well as if  I could walk.

What stands out in my mind, and is a memory I will always cherish, pertains to my friends. Lynne took such incredible care of me; she insisted  on giving me a full shower and did not bat an eye  when helping me in the bathroom. She and Adam took turns feeding me; she, Adam, and Ricardo  all made sure I was able to  drink my various beverages.  On one occasion, Lynne and Adam both had to help me in to and out of the bathroom at Adam's house; one held me up while the other did the pull down, then one held me up while the other managed the paper and the pull up. Adam practically carried me back to my wheelchair. When I was finally situated, we all took a moment to regroup;  I thought to myself how lucky I am to have such incredible friends.

In the last several weeks I've had visits from friends I made from all the different chapters in my life.  I count myself very fortunate indeed.

How very comforting

  I seem to have a stoolmate...

Adventures in mommysitting

 My poor Cecilia. It never fails that, in those few hours each day when she is left alone with me, some new adventure occurs.

As usual, I needed help getting to the bathroom. Cecilia has mastered the art of getting me up from the stupid chair and onto the potty and there were no issues this time around. After I'd finished cleansing, drying, and flushing, I called her to help get me back to the stupid chair. She very ably  lifted me up, pulled up the knickers, took hold of my wrists and we minced our way back toward my stupid chair. As we approached, we noticed the very lovely (but very slippery) zebra pillow had fallen forward and was in a position to wreak havoc. This is where the fun began.

Desiring to move the pillow out of the way, Cecilia attempted to hold me with one hand. I am much higher maintenance than that and I immediately began to teeter. Fortunately I was able to move toward the upholstered bench and there I landed, albeit precariously near the edge. It  was no easy task to  shift the land m-ass but I managed.

I wrote not long ago about taking a tumble in this very same area; my caregiver's attempt  to stand me up failed and I landed on my knees. Frightened that Cecilia lacked the strength to lift me  from this lower position, I quailed at her insistence that she could do it but agreed to try. It did not take long for my legs to prove untrustworthy and down I went, onto the bench.

At this point I was considering my options, but Cecilia insisted again and again that we try,  that she could do this, why didn't I trust her, she wanted to help me, and on and on. Her frustration caused her  to raise her voice; I began to cry, explaining that I didn't trust my legs, that I didn't want to fall, knowing that if I did fall she would feel worse and I was trying to spare her that. I suggested we take a minute to calm down, my suggestion was drowned out  by her begging me not to doubt her. She came toward me because she wanted me to move further back on the bench;  I wriggled and rocked  the land m-ass back as far as I could go; I looked at my daughter's tear stained face and pleading eyes and knew I had to let her try.

Cecilia bent down and, holding me as if in a hug, lifted me and got me to my stupid chair. I won't say we weren't both nervous -- there was a lot at stake -- but she did it. The look on her face,  happy and relieved that she had succeeded, is a look I will never forget. And it was the best hug we've ever shared.

Some very intimate and therapeutic conversation followed. I know -- we all know -- my disease impacts everyone connected to me, and Cecilia is very fragile. Helping me as she did gave her a feeling of strength, both physically and emotionally.

At 17

 I was chock-full of attitude, and pretty stupid judging by this picture.

I want to be alone... with my cigarette

Feets of amazing strength

 Every time I am raised to a standing position my entire body does an involuntary stretch;  my muscles,  lulled into complacency while I sit, ready themselves for action. I stand tall, my head looking up, my back straight, my quads and calves and glutes doing the best they can to be tight (which doesn't mean tight, not like it used to, but it's all relative), my feet up on their toes.

What was that? Yes, I go up on my toes.

My balance is for shit, walking without assistance is a thing of the past, but I can still stand  on my tiptoes -- while being supported, of course. Not only can I stand, I can take a few steps à la ballerina. It is rather a sight to behold.

I think I shall go find a tulip garden.

Worth a Listen

David Rakoff's Half Empty Worldview Is Full Of Wit

http://www.npr.org/templates/story/story.php?storyId=130015774&sc=emaf

I love his perspective and the way he uses language; each syllable is a succulent ingredient in a gourmet banquet of delicious sentences. Enjoy.

Bitchin'

The oven blasts at 500°; when the door opens the heat almost suffocates me with its intensity.  My back, leaning against the chair, suffers the most because it is not exposed to the air. I sit, motionless, trying to wait out my internal furnace when I become aware of an itch on my back, near the seam of my sports bra. Cautiously, I move very slightly from side to side, not scratching exactly but moving enough to provide some relief. But. Then. Another itch flares its ugly nostrils; this one -- itchier than the one on my back -- penetrates the outside of my right shoulder, completely unreachable. I think to myself I will surely go mad but for the fact that I know all this will pass. Eventually. The time spent waiting for it to pass, however, creeps by so slowly I don't know how I will make it.

It's five o'clock in the morning. The tiniest of rattles sounds in my chest. My eyes closed, I manage  a feeble cough, but it's not enough. The rattle reappears but this time I cannot cough; I seem to have forgotten how to do it on command. I try -- unsuccessfully -- to clear my throat, worrying all the time that the  horrible, sick, old-person-hacking sounds I make will somehow find their way into Cecilia's dreams, turning them into nightmares. Finally I have a productive moment (eww, gross, this makes my stomach  unhappy) but I can't move the damn blob far enough; my swallow mechanism goes into action and the damn blob goes right back where it came from and we are back at square one.  I continue this way for about an hour and a half and then give up trying to sleep. I elevate my stupid chair (oh yes, I was sleeping in my stupid chair) and notice the rattle is gone. I close my eyes and am near sleep when...

The tickling feeling I've come to hate -- and fear -- starts its evil buzzing in the back of my throat. I cough a couple times, then yawn the yawniest of yawns (so yawny I feel I might dislocate my jaw), then my nose runs and my eyes water. When my eyes water they sting SO BADLY; nothing helps except to have them wiped with a damp cloth. Everyone else is asleep so I clench my eyes and pray for the stinging to go away.

 The next few hours are spent enduring more tickling and coughing and yawning and furnace blasts.

In response to a weekend call, the plumbers arrive after breakfast to look at our well, pump, and tank. Water on, water off, back and forth. I wait as long as I can and finally am granted leave to go (I don't need to tell you where). Naturally I take full advantage of the opportunity but, when I am finished and am ready to push my happy, cleansing buttons, I am told to wait because the plumbers  have turned off the water again. I sit and wait, not long but long enough for my feet to begin swelling. Groan. At long last the water is turned on and I tidy things up and go back to my stupid chair.

So, the well. A new tank was needed (plunk). A new pump was needed (plunk plunk). The well is dry (plunk plunk plunk plunk) so the new pump was removed (-plunk -plunk). Temporary solution: connect to the neighbor's water (they are connected to county water).  Short-term solution: have the well filled by a local company that fills swimming pools (mini-plunk). Long-term solution: connect to the county water (plunk plunk plunk plunk plunk plunk plunk.....).

Not one of my better days. I hate ALS, I hate these stupid hot flashes, and I hate having to spend huge gobs of money I don't have.

A Sunday smile

Photo

 Don't you just love the look on the dog's face?

Hott

Oh, how wonderful it is to be an almost 52-year-old woman with ALS. 

At my age, I am a prime candidate for MENOPAUSE. Since I rid myself of the monthly manifestation of  my miserable menses (all hail the great and powerful endometrial ablation), I have no visible indicator to tell me if, in fact, I stand on the brink of hormonal hell.

What I do have, what I think I have, are hot flashes. It's the strangest thing -- I feel as though intense heat radiates out of my body; I imagine wavy heat shimmering up all  around me. There is no pattern, no particular time of day or night, it just happens and it's very uncomfortable.

And it's a pain in the AL-ass. If it happens while I'm sleeping I can't kick off the covers... well, I could, but I would never get them back on.  Cecilia, who helped me get up just after one of these episodes, complained that I was all sweaty. Lovely.

So tell me, do these sound like hot flashes? If so, I guess I can check menopause off my list of things to do.

They will survive

My favorite librarian works for a grossly underfunded program, which motivated the creation of this in-house video. MFL (in a purple tank) makes her first appearance at 1:45.

Support library funding, no matter where you live.

Pearls Before Swine, yesterday

Reflecting

 I had some interesting dreams last night and I wanted to share one with you, my adoring public.

I was vacationing at some sort of resort not unlike the one in Dirty Dancing. My bungalow was situated near a long wooden bridge, beneath which ran a river. Behind the bungalow was a huge backyard and a brand-new chain-link fence; on the other side of the fence were untamed woods. I must have had ALS because I had a caregiver, a short, stooped over woman who sported a platinum blonde beehive hairdo and bright red lipstick. The presence of my caregiver notwithstanding, I got about perfectly well by myself. My cat, Lydia, lived with me along with a tiny, puffy, white kitten.

When I opened the back door to go outside, the little kitten escaped and sped like a bullet toward the chain-link fence. I knew she would be killed if she made it into the woods so I cried out to people who were in the yard to catch her, but no one heard me because my voice wasn't loud enough. I tried running after her but my legs would not move.

I found myself walking down a street -- there were dogs and cats everywhere, and each one had a tiny, fluffy kitten. I remember thinking that a cat in the neighborhood must have had babies.

I walked until I reached the bridge. My caregiver kept disappearing to take phone calls from Malcolm (whoever he is) but I wasn't worried because I knew my mother was there to help me -- I could see her on the bridge.

**********************
I've had plenty of dreams about my mother since she died more than 15 years ago, but she is always WITHOUT EXCEPTION in a mirror.  Until last night.

Pillow talk

  Some visual aids, for your enjoyment:

 My lovely zebra pillow -- it supports my back by day and my right arm by night. Everyone should have one.

 This is the wedge pillow, cleverly covered by an old Twister towel. The towel prevents me and my bed pillows from slipping during the night.

 The wedge gives me the extra elevation I need to breathe easily when I go to bed.

Movie time

I don't know when it happened, but I recently realized that my right hand no longer moves on its own,  that it is completely dependent on my right arm if it wants to go anywhere AT ALL.  As for the digits, my thumb moves just a little bit, as do the middle and ring fingers, but my index and pinky fingers are completely still. Likewise, my right wrist is kaput.

Here is a ghastly video to illustrate:

I didn't forget

I just didn't say anything until now. But I thought about her a lot, and saw her several times...in the mirror.

I love you and miss you, Mom.

Out of the mouths of babes II

 What Jenny called me as I succumbed to a fit of the giggles:

Omama Bin Laughin'

My girls do keep me entertained.

Out of the mouths of babes

 Last night, around 11:00 PM, I called Cecilia and asked her to help me get to the bathroom. Using the new protocol, she led me and I made it without incident. (You weren't expecting that, were you?)

On the return trip Cecilia, firmly holding my wrists up as I lumbered along, commented that I look very much  like a Tyrannosaurus Rex.