Sue Cleaning My Teeth - Albany, New York
c 2006 Curt Miller

The Daily bLog
When you are dependent on others for your care, you appreciate kind, caring and thoughtful people. Sue is one of those people in my life. Not only is she a superb hygienist, but a great listener, a great wife to her dentist husband and a great mom to her four kids. She and I have had similar issues in our adult lives and we've shared all the stories, happy to have someone else to talk to that's "been there."

What really amazed me - and which I appreciated to no end - is how she was prepared to deal with me this morning so I wouldn't have any difficulty during the cleaning from swallowing water from the water pick, or whatever she called it. She cleaned my teeth by hand, using all the old-fashioned tools. It took longer but it was time we both enjoyed together, sharing the bits and pieces of the past six months of our lives.

City Hall - Albany, New York (cell phone picture)
c 2006 Curt Miller

Roof Detail, State Street - Albany, New York
c 2006 Curt Miller

Out Romping on Lark Street - Albany, New York
c 2006 Curt Miller

The Daily bLog
Complacent I'm not. Got nabbed by the cops today on Lark Street at noontime for what I do - and have been doing for 35 years - taking street pictures. Yup, a common criminal am I. I just left Ben and Jerry's on Lark Street after a lunchtime meeting with ADK Executive Director Neil Woodworth and ADK past vice president Keith Martin. I wasn't out the door ten feet when I spotted a group of teenage girls frolicking up Lark Street in the warm sunshine of a perfect spring day. I quickly brought my Leica to my eye for a quick shot. As soon as I dropped the camera from my eye, I heard a voice coming from a police cruiser across the street, where Officer Krupke lay in wait for pond scum like me, protecting the victimized public from the savage ravaging from my Leica's lens. Caught!

"What are you doing, asks Krupke?" "I'm taking pictures," says I. I went on my way. Not satisfied that I wasn't going to knock over the candy store at the next corner, he piloted his Crown Vic cruiser in a 180 and pulled me over. "What are you doing?" "I'm taking street pictures...I'm a street photographer and I'm within my rights and am not breaking any laws and just "doing what a street photographer does...take pictures on the street." Why are you stopping me," I ask. Not much response, so I raise it up a couple of notches: "WHY are you stopping me?" These guys don't back down even when they're wrong. Well, no need to bore you, my gentle reader, with the idiocy of the following ten minutes of harrassment, but suffice it to say that Albany residents will be much safer in their beds tonight with Curt Miller and his Leica off the streets!

Friends, this country is becoming scarier by the day. I want to thank Officer Krupke and the Albany Police Department for doing their part to ensure the trend continues uninterupted.

Pepsi Arena - Albany, New York (cell phone picture)
c 2006 Curt Miller

The Daily bLog
Until MG made it impossible for me to continue to teach digital photography, I worked with students over the previous three years explaining how to get the best results from their digital cameras. Two years ago - or thereabouts - cell phone manufacturers began to put low-res chips behind cheap lenses on their cell phones. As a perfectionist about my image quality, I initially thought this feature to be less than useless to me. Recently, though, I learned of classes that teach how to make fine art pictures with your cell phone. I guess this story won't end tonight. I will explore this new medium to its fullest potential. It images like a toy camera. That has it's own esthetic to exploit...sharp here, blurry there. Keep watching this space!

I'm thankful the weather is turning nice and that my multiple therapies for treating my disease are conspiring to give me more strength, allowing me to eat better and walk farther. Today I took a long walk up to Arbor Hill (second day in a row!) to ply my favorite trade: street photography. While I have gone back to shooting B&W film in my Leica, I do carry my little Canon digicam on my hip. Here's an offering from today on my Street Photography blog.

A Tree Grows in Arbor Hill - Albany, New York
© 2006 by Curt Miller

The Daily bLog
What an incredible spring day it was here in the capital region of New York. The sun makes everything come to life, including, it appears, me. I felt so good that at lunchtime, I took a long walk from my office down to one of my favorite haunts, Arbor Hill, where I have made many of my best street photographs over the past ten years.

After work, I took a ride up Madison and Western Avenues to the art supply store on Fuller Road to pick up some more watercolor paper to continue my experiments with fine art printing on my Epson inkjet printer. The big news of the day, however, was that I picked up an order of fish and chips at Long John Silver's on my way home...and ate all the fish, four french fries and half a fried doughball! It was sooooo good. The greasy, crispy fish was a delight to my deprived palate, this being the first solid meal I've eaten in six months! Something must be working.

Better Late Than Never - Cummington, Massachusetts
c 2006 Curt Miller

The Handsome Fox - Cummington, Massachusetts
c 2006 Curt Miller

The Daily bLog
Right out of the story book. If I hadn't seen this with my own eyes, I'd never have believed it. It was a beautiful Berkshire Sunday. With winter behind us and the sun coming up in the east, I decided it would be a good day to point the car in some different direction than it's daily trip west. Shelburne Falls is a great place, next county northeast of here, and it's a nice ride through some great countryside of the Berkshire plateau, a table land that rises sharply - 1600 feet in fifteen miles - above sea level at the Connecticut River to the east.

As I meandered through the woods along country highways, through towns like Peru, Windsor and Worthington, I came upon the most unexpected site in Cummington: this red fox lying in a nest of grass in front of an old chicken coop. I backed the car up, got out slowly and approached carefully and quietly, talking soothingly to this beautiful creature as I approached. I spent at least five minutes with him, talking and photographing while he minded his own business, grazing his eyes over the adjacent field from his perfect perch, hoping to find some tasty morsel for dinner. I was no more than a passing curiosity, welcome to stay and chat as long as I cared to do so, and as long as I didn't interfere.

I'm glad for Sundays. I'm happy for film and cameras...and internet, so I can share treasured moments like this with my friends.

Harbingers of Spring, My House - Pittsfield, Massachusetts
c 2006 Curt Miller

The Daily bLog
Birds. Flowers. Sounds. Smells. Spring has come to the Berkshires. The morning dawned a beautiful early spring day. I went out and washed my car at the self-serve place, then back home to experiment with making black and white prints on artist's watercolor paper. I started to long for my motorcycles. One day, post-apheresis, is too soon to expect the strength to come back to my arms suffieciently to safely handle the bike, so I knew a ride would need to wait for another day. "Ride safe," as the saying goes.

Cesar - my photo-friend and mathematics professor at Williams College - called around noon to talk photography and my work with digital B&W printing. Well, one picture's worth a thousand words, so I packed up the car and went up to Williamstown. We spent a couple of hours pawing through pictures, making prints on his Epson and, as a finale, he played a Chopin piece he's been practicing on his gorgeous Italian upright piano. On my way back, I stopped to make pictures with my wonderful 1924 Leica replica...and developed the magnificent negatives it makes when I got home.

Nurse Jane - Albany Medical Center
c 2006 Curt Miller

Curt Prepping for Apheresis - Albany Medical Center
c 2006 by Jane

The Daily bLog
We've got this down to a science. And it's good science, too. The apheresis treatments have given me some of my life back. I am able to predict that I will feel stronger by the next day, be able to eat foods that I normally couldn't.

I saw the very first person, other than myself, with MG this morning! I've never laid eyes on another human being with this disease (I think I knew a dog with it once, though). I overheard the woman in the bed next to me and got some clues she might be a sufferer, too. I approached her as I jumped off the bed (I always jump out of bed...makes the nurses twitchy, though) and asked her if she had it and she said "yes, you, too?" "Yes," I said. "You have a thymectomy yet?" "No, and I'm not going to. Nor will I even have a CaT scan to see if I have a thymoma. I couldn't care less. There's no science behind the value of thymectomy." Her next words floored me: "I know, but you should have one anyway."

I asked her if she had had a thymectomy and she said she had, a couple of years ago. I asked her why she was having pheresis. She indicated she still had tremendous weakness in her arms and needed it routinely, every two weeks. I asked her why she was pushing me to have a thymectomy when she was living proof it didn't always work. "Well, you've just got to have it...and you're in worse shape than I EVER was." Then she asked me where my driver was and I told her I drove myself. She was incredulous at that comment. "Well, where are you going, home?" "No, I'm going to work now." "How can you work?" "I'm a tough son-of-a-bitch," I said. "You can't do that," she retorted. "Watch me!"

Turns out she is a big part of the local MG support group (which I don't attend because I'm too busy). I know now to stay away from them because they, too, will push thymectomy. She made that clear. She's also going to pray for me that I have a thymectomy and slow down.

My energy and determination are what enable me to survive with this disease. Everyone who sees me says I'm worse off than anyone they've seen, yet I amaze them with what I accomplish and the energy I have.

"It's in the head," I said. "I'm determined not to let this, or anything else get in the way of my life." "I intend to burn the candle at both ends and keep doing everything I have been doing."

Friends, I really don't appreciate the way MG patients PUSH thymectomy. In fact, I'm really offended by the whole thing, everywhere I turn, even unsolicited comments. Now I'm so stridently determined against it that I don't care if I drop dead from not having it. I called my doctor just now to tell him I will never consider one and that I will not spend $1,300 on a CaT scan, either, and to NEVER discuss the issue ever again with me. He won't.

Marching Clouds - Albany, New York
c 2006 Curt Miller

The Daily bLog
A stronger day. When I woke up this morning, I felt stronger than I've been feeling for the past several weeks. I could tell that something was up...or, more precisely, down - the antibodies. While I've learned to make little judgement about how to judge my future condition by how I feel at the moment, I could see an immense improvement in my physical condition during the course of the day.

The Candy Store - Guilderland, New York
c 2006 Curt Miller

The Daily bLog
Needed a fix. When I was a kid growing up in New York City, I, like every other 50s kid, was addicted to baseball cards, bubble gum and ice cream. The place in my neighborhood was Myer's, up around the corner from us, on Metropolitan Avenue. I remember when my uncle came to visit me from Newfoundland, as a bachelor in a wheelchair, he was among the unsuspecting and uninitiated with regard to the needs of a city kid. Fresh meat. Ahhh, I thought, I'll wheel him on up to Myer's and trick him into buying me some stuff. Needless to say, naive in the ways of city kids or not, he caught on to the ruse really quickly. One bite of the apple is all I got.

Today, every camera store in the continental U.S. is a target for my sweet tooth. I never know what goodies might lie behind the next counter. Today I picked up some new inkjet paper to try out and, so far, so good.

I was playing around with my meds a bit today to see if I could tweak my Mestinon (the MG sufferer's insulin) and I did seem to be able to gain a little extra benefit by increasing my blood level a bit with my lifesaving pyridostigmine. I was able to speak a little longer and eat a little better. Only two days until my next pheresis.

A Rite of Spring - Albany, New York
c 2006 Curt Miller

The Daily bLog
Prednisone worship. On my morning walk to work, my cell pnone rang and Nicki - my neuorologist's - nurse's voice was at the other end: "can you be here at 10:45 this morning?" Yup.

Though the visit lasted only ten minutes, Doctor Wymer and I have learned to communicate without any of the useless platitudes and crap that typically permeate such a visit and extend the appointment well beyond that which is necessary to make critical assessments and treatment choices. We consult. I throw out suggestions, he thinks and makes suggestions and we always come to a mutually agreeable place. Today's outcome: step up prednisone from 40mg every other day to 40mg one day follwed by 20mg the next, a fifty percent jump. This will bring the immune system into line more quickly. He increased my CellCept from 1500mg per day to 2000mg per day. This is the drug that works on the immune system in a very narrow spectrum and will keep the antibodies that target my acetylcholine in check.

I visited the Berkshire Museum Camera Club in Pittsfield, tonight, to visit with old friends and share ideas on picturemaking. It was a bittersweet reunion insofar as it was there, in the auditorium of the beautiful museum, that I had my very first visit from old gravis, one year and five weeks ago tonight. It's been a tough year and five weeks. Nonetheless, it was delightful to see everyone.

Cathedral and Museum - Albany, New York
c 2006 Curt Miller

The Daily bLog
Spring. The air was cold and clear today. It was but the second day the redwing blackbirds have been calling. When I was growing up in New York City, there were none of these harbingers of spring. No habitat for them, at least not in my neighborhood in Queens. I love them. I love the light of the spring sky, the smell of the woods, thoughts of shedding winter garb and walking by a stream.

I am stronger and more alive. My drugs sometimes give me the feliing that they're working. The process is slow - painfully slow - and the gains modest. Tonight I was able to whistle. Not a big deal for most people, but I lost the ability to curl my tongue and make the necessary "0" with my mouth a year ago. It's coming back. I'll take slow and steady. Please, God, keep me going in that direction.

Canoe Meadows - Pittsfield, Massachusetts
c 2006 Curt Miller

The Daily bLog
An exceptionally creative and productive Sunday. Had a great chat with my buddy Peter Bryenton this morning about my explorations into, and success with, exhibition quality digital printing from my silver images. You can view the photograph that made my foray into B&W digital print a success on my Photo Musings page, along with some of my notes on how I got there.

MG-wise, today was not a great day. I'm getting about three really good days from each round of pheresis, then I drop off again. The symptoms of swallowing difficulties are returning but could also be related to my prednisone cycle, too. Hopefully, this too will pass. For now, let's just enjoy the pictures.

The Altar at Chapel Pond - Silver and Inkjet
C 2006 Curt Miller

The Daily bLog
Success! I have finally achieved an inkjet print from my Epson 2000P printer that faithfully represents a gelatin silver print from the darkroom. This is an enormous leap in my quest to achieve maximum quality in my black and white photography. Side-by-side, the pictures are slightly different, mostly because of surface texture and paper color but, aside from that, they are dead ringers for one another. A major benefit of this type of print output is that the 100th print is identical to the first. The prints are much easier to make than in the chemical darkroom (though require just as much skill to get the first one right. The Epson print is just as archival as the silver print. I do need to start with a "perfect" print from the enlarger. I scan the print on a good flatbed scanner and bring the image into Photoshop where I can then further adjust the print for tonal range, spotting, burning, dodging and sharpening.

Today was sunny and cold here in New England. I made the best of it by enjoying "Saturday stuff" and playing in my darkrooms.

Apartment Building, State St. - Albany, New York
c 2006 Curt Miller

The Daily bLog
Moving mountains. Facing adversity. It's really tough to deal with an uphill battle every waking moment of every day of your life. Such is living in a body wracked by disease, especially one so disabling that it even makes the most basic functions of eating and speaking all but impossible sometimes. Then, I take stock in the positive, look around me and count the blessings I do have. I also look for inspiration in the incredible accomplishments of others.

The building above represents a tremendous accomplishment. What looks like a fairly normal eight story, turn-of-the-twentieth-century brick building, was actually built about 250 feet and 90 degrees rotated from where it stands now. In 1928, the NYS Comptroller began construction of the new Alfred E. Smith building on the site where this building originally stood. I actually saw a movie that showed the building being moved the 250 feet to its present location on rollers, pulled by teams of horses!

And we think we've got it rough? What's dealing with MG compared with that?

Sunlit Tree, Academy Park - Albany, New York
c 2006 Curt Miller

The Daily bLog
A strenuous and tiring - but productive - day. I knew immediately upon awaking that my apheresis on Tuesday was finally kicking in. Strength replaced weakness in my arms and I was able to chew light foods and swallow them. I could talk with greater ease and people could understand me. That's success all the way around. I continue to gorge myself on days like this and drink fluids until I'm floating. I'm gaining weight and feel healthier.

Winter's Last Gasp - Albany, New York
c 2006 Curt Miller

The Daily bLog
Not a great day. Winter came back with a gently roar this morning, glazing the roads and sending cars into each other and into ditches. Lots of delays.

Very busy day at work. Lots of weakness and difficulty speaking. Pheresis not worked through me yet, I suppose. Tomorrow. Another chance.

Morning Bus - Albany, New York
c 2006 Curt Miller

Evening Bus - Albany, New York
c 2006 Curt Miller

The Daily bLog
I'm gonna buy me a bus. Then I can pick up all my friends and we can go on long journeys through the Adirondacks. I'll have Tom O, our main man at the Adirondak Loj, outfit the thing with bunks, put in a cookstove and we're set for the road. Crazy? Just imagine the attention I'd draw with one of these things in my driveway...especially the one with the Simpsons plastered all over the sides. Just Bart.

Plasmapheresis today. Getting good at this stuff. Veins worked great: no collapse, no "blowouts." I was re-hydrated after all my efforts of the past week and the nurses were pleased. Three hours ten minutes, start to finish. My hematologist, Dr. Taft, said "every ten days." Every ten days it is. The results are astounding. After the pheresis, he came back with a third year med student in tow, telling her about myasthenia gravis and the difficulties with diagnosis and treatment. He told her that in the old days they couldn't diagnose it and because it usually presented swallowing difficulties first, after the third visit to the ER, the patient was usually put on the psych ward. Oh, the stuff I learn from old Doc Taft. I'm usually leaving in stitches.

Back to work. Only six hours today. Most myasthenics in my shape seem to like to stay at home. Nurse Jane and I discussed this today. she said it's all "attitude." And I got attitude. Yee-hah!

Gonna get me a bus.

Sign of Spring - Albany, New York
c 2006 Curt Miller

The Daily bLog
Monday. March. Rain. Can't complain about the winter we had, yet it's nice to know it's almost over anyway.

Weakness has returned to my body. After a successful run of about 9 days, I found myself having difficulty swallowing and weakness replaced much of the strength I had regained in my arms since the last pheresis. That means it's time again for another treatment. Called the pheresis unit early this morning to see if they could take me sooner than my scheduled date with them on Friday. The ever-smiling Herma checked the schedule and said to come in tomorrow at 8am. Grateful. Addicted. Pheresis will take me out of this state.

Ducks - Richmond, Massachusetts
c 2006 Curt Miller

The Daily bLog
Recovery. Yesterdays was an incredibly successful and enjoyable day for me. More fun than Christmas. So exhausted from such a long day was I, that sleep came easy and deep and long. I awoke at 8, jumped out of bed, shaved, bathed and breakfasted and was out finishing off a roll of film before 9:30 so I could develop the negatives from last night and take them over to Wal-Mart for scanning and printing.

Adirondack Mountain Club Board of Directors Meeting, March 11, 2006
c 2006 Curt Miller

The Daily bLog
A busy day doing all the things I love to do. The Adirondack Mountain Club is such an important part of my life. The mission. The people. The issues. Wilderness. Tranquility.

Today was the first board of directors meeting of my presidency of my beloved ADK. The picture above is my view of the group. The faces are of friends new and old, voices of the wilderness and for the wilderness. Some times we disagree on issues, sometimes there is unanimity. Overall, there is little "partisan fractionalism," as we political science-types like to call it, but in the end there is usually concensus and always collegiality.

The early days in my tenure are marked by my difficulties speaking. I find it nothing short of remarkable that people from every corner of the organization come to my side to assist me, not the least of whom are our beloved administrative assistant, Virginia, and my most loyal associate vice president, Jack Freeman. Virginia and Jack made the day possible for me. Virginia attends to every detail: notes, agendae, food...you name it, she does it. Jack was my voice for the entire day, picking up on my notes and being parliamentarian whenever I was unable to do so. The evening event was our annual Presiden't Dinner at the Queensbury Hotel in Glens Falls. This important awards ceremony could have been a real disaster for me but for the spirited and most eloquent dissertation of my speeches by Jack. I love him. I love them all.

Ice Out, Nassau Lake - Nassau, New York
c 2006 Curt Miller

The Daily bLog
Exhausted. I make every effort to get as much sleep at night as possible. Rest is critical to maintaining strength and balance in the treatment of myasthenia gravis. Despite my best efforts, last night this was not meant to happen. I awoke at 3am sharp, unable to go back to sleep until 6. Well, as my boss said when we talked later in the day about my absence, "that's what sick days are for."

The Daily bLog

My winning ways with swallowing continued today, so I downed as much food (in liquified form) as I possibly could. Bulking up and rehydrating are my main goals at the moment. I couldn't talk my hematologist into delaying the time between pheresis treatments, so I'm going in for another next Friday.

I took the picture at right on my way back from a retirement lunch for a treasured co-worker in Troy this afternoon. As I walked out of the restaurant, I spotted this cute little bungalow perched on top of the hill on the other side of the road and couldn't resist taking a picture of it.

Garage - Nassau, New York
c 2006 Curt Miller

Grubb & Kosegarten - Nassau, New York
c 2006 Curt Miller

Capitol at Sunset - Albany, New York
c 2006 Curt Miller

The Daily bLog
Everywhere I travel, I find a rich tapestry created by the colors, shapes, people, buildings and people I encounter. Today's blog captures some of the richness in the texture of that tapestry...for me, anyway. This is the stuff I encounter in my daily life...on the way to work and on the way home. I love the light in each one. It influences my perception of shape, size and texture.

Today was the best day I've had in more than two months. My strength returned. I was able to walk like an athlete. I was able to swallow and consume a lot of high quality, high protein-high carb food. I was invited out to lunch by a visiting architect and we settled on Greek. We walked up to Lark Street and I pointed to the spot where they filmed the streetcar scene in John Kennedy's book-turned-movie"Ironweed." After settling in at the restaurant we placed our orders. Most in our group chose gyros or souvlaki. You should have seen the look on the waiter's face when I ordered a big glass of...

Tzatziki

Honest Weight Food Co-Op - Albany, NY
c 2006 Curt Miller

The Daily bLog
Contrary to what I expected, today was a day of physical strength and a healthy appetite. Because prednisone days are usually good - and the opposite days bad - I was happily surprised by the experience.

I'm now concentrating on diet quality as well as quantity. Because of my inability to eat for the past year, I have lost 45 pounds, overall. Myasthenia gravis affects its victims differently. In my case, it affected my ability to chew and to swallow severely. For many months now, I haven't been able to chew a morsel of regular food...and even if I could, I wouldn't be able to swallow it without choking. Much of the time, there is no peristalsis to make the food travel down my throat. Mestinon, my front-line drug is sometimes helpful in getting things working, but nowhere near normal. These days, I try to pack as much healthful stuff into me as I possibly can, so I've been eating food from the health food stores like the one in today's picture.

Education Department - Albany, New York
c 2006 Curt Miller

The Daily bLog
Isn't that one gorgeous piece of architecture? At two normal city blocks long, it's one incredibly big building. I never get tired of walking into it every morning to get to my desk.

Today was a "P" day...that's for prednisone. On days when I take it, I become so energized - and SO hungry - that it's a noticeably different place than the norm to which I had become accustomed (down, weak, sluggish). I get a lot done and tackle everything that needs doing. I always hope that the energy will continue the next day. We'll see. In the meantime, I'm so happy with all the stuff I get done. I even went printing in the darkroom tonight for the second time in a week! That's progress.

Sunday, March 5, 2006

West Branch, Housatonic River - Pittsfield, Massachusetts
c 2006 Curt Miller

This picture was taken about 100 yards from my house. Even though it's practically in my back yard, I forget that I'm living so close. It just reinforces my belief how important it is to pay attention to what's around you.

Winter Woods - Richmond, Massachusetts
c 2006 Curt Miller

The Daily bLog
A wonderful sunny Sunday. After a long night's sleep and a good breakfast, I met the challenge of a restful Sunday, dabbling in the sort of stuff I like to do: making pictures. I've got a replica of a 1924 Leica - the first production 35mm camera ever made - that I love to carry wherever I go. In spite of it's limitations (or because of them), I'm forced to really slow down with my picturemaking and concentrate on the process. I would liken it to a writer writing with a quill pen. The second picture on today's blog was made with that "old technology" camera. The resolution from the negative is equal to about 15 megapixels worth of digital camera!

As I've come to expect from my "day after prednisone" day, today brought some weakness to my arms and more difficulty than yesterday with eating. Nonetheless, I endured and dranks and drank - thinned soups, tomato juice and milkshakes. Lots of energy and vitamins, in spite of my difficulties.

Saturday, March 4, 2006

The Daily bLog
Today was a post-pheresis and prednisone day. The two therapies combined synergistically to give me a real good day. Got up and out early, drove to Hadley (near Amherst, Mass.) to go to the health food store and the camera store for darkroom supplies. On the way back, I stopped in Northampton for a while, just enjoying putzing around and visiting some of my favorite shots. I'll tell the story with a few pictures I made today.

Homestead - Goshen, Massachusetts
c 2006 Curt Miller

Farm - Richmond, Massachusetts
c 2006 Curt Miller

Crossing the Connecticut River - Hadley, Massachusetts
c 2006 Curt Miller

Friday, March 3, 2006

Window, Philip Street - Albany, New York
c 2006 Curt Miller

The Daily bLog
"Oil change" today. Not much sleep Thursday night; up at 5:30. Mouth didn't work - only one bite of eggs.

The regular gang met me in the apherisis unit at albany med at 8:00 sharp. They were ready, my veins weren't, as we soon found out. This morning's set up took multiple stabs into my forearms with a variety of large needles. Apparently, with repeated attempts at this procedure - so I am told - the veins tend to collapse when suction is applied. To keep them in condition, I must keep hydrated. Means I am not hydrated. Not well nourished, either. Nothing goes down. Nothing, that is, besides milkshakes.

The pheresis finished at about 11:15 and I was off to work for the rest of the day with my fresh oil.

Thursday, March 2, 2006

Greg's Barbershop - Delmar, New York
c 2006 Curt Miller

The Daily bLog
Ups. Not too bad today. More up than down. Prednisone high, perhaps. Won't knock it, just go with it for the ride. So good by 3pm, I called my barber, Lesley (she), to see if I could schedule the haircut I missed four weeks ago for tonight. Slotted. 6pm. Shorn by 6:30. 99 cent milkshakes at Stewart's this week, so I stopped twice on the way home. Strength and energy for the "oil change" at Albany Med tomorrow morning at 8. Never thought I could ever get to a place where I could enjoy going into a hospital to have a couple of twelve gauge needles stuck in my arms. Imaging becoming addicted to a state of feeling normal?

Wednesday, March 1, 2006

Crane - Albany, New York
c 2006 Curt Miller

The Daily bLog
Frustration. Temptation. Frustration. I started today with extreme weakness in my arms. Dressing - the mere act of buttoning my shirt - was almost more than I could handle. One week post-pheresis. I can't believe the window of mobility from such an invasive treatment is so short. My antibody level is building. My speech is thickening. What does surprise me is the variability of what is affected: four weeks ago, I couldn't walk 100 yards; today, I practically sprinted 3/4 mile to my office, yet, the voice and swallowing difficulties are the same. Why? Nobody knows the mysteries of gravis.

Feeling a burning desire to have something other than yet another milkshake for dinner, I decided to make some runny - snotty-runny - coddled eggs. Wrong. Even though they were still half-raw and mashed, the second tiny spoonful brought me to my knees. Imagine choking on a piece of soft egg the size of a grain of rice? Unfathomable.

More pheresis Friday. More hope.