Little has changed. My meds are the same except that I have lowered the Doxepin from 20 mg. to 10 mg. at night.
My weight is unchanged. The one difference I have noticed is that my brain is more active - I can read and
understand what I am reading, although it is still tiring. And I could help Carolyn with her housing forms
without getting confused and frustrated. I am sleeping a lot, but it feels great - feels restorative. Body
pains are no worse, no better. Just there.
Monday, March 1 - 8th infusion
Woke up very reluctantly at 11 am, but then eased into wakefulness watching TV until getting my coffee and water
(two trips downstairs) at noon. By time to leave for Dr. B's (roughly 1:15 pm) I was positively bouncy. Bob says
he can't remember seeing me walk this well - I really walked like a normal person, not the shuffle. And
no cane! Felt normal until 4:15, then legs heavy again, back upstairs to bed.
Tuesday, March 2
Got up at 9:30 for our new housekeeper (we have needed one for three years, but couldn't find one). She called to
say she had hurt her foot and couldn't come. Can't go back to sleep now - way too excited about my trip to
Georgia tomorrow. Spent 5-7:30 pm in terrible pain, like a migraine, curled up in bed. Then able to function
again, stayed up to 1:30 am getting all my handouts finished for the conference.
Wednesday, March 3 - 9th infusion
With special permission, I am having an infusion today so that I can fly to Valdosta, Ga., this afternoon and
speak tommorrow at a conference. It's all very exciting. Up at 8:30 am - shower, dress, must pack and be out of
the house by 10:30. I have a 4:30 pm flight to Atlanta, then will shift to a puddlejumper for the last leg of the
trip. Valdosta is near Tallahassee, FL - it should be warm.
The Ampligen has to be mixed the day we take it, and they do that a good two hours west of Dr. B's, so the
earliest we can ever get them is 11 am, which sort of cramps your style a bit. But Maureen got there early to get
my catheter in, so as soon as the Ampligen arrived, I could start.
I asked for a liter of IV saline to help with the flight, so the infusion took 2 1/2 hours. We ate at the
Charcoal Pit (my only real meal of the day), then went directly to the airport, only to find out my flight was
delayed. I was tired and achey. Finally they boarded me first at 5 pm. We left the gate at 5:45, and as soon as
we did the pilot announced we would be at least an hour sitting on the tarmac. The hour turned out to be two, and
my pain pills worse off. I was miserable - will never get on a plane without a bottle of water and some
food to take pills with again. I wanted badly to lie down, but had to remain squished in between the window and
two big guys returning to Atlanta from business. The stewardesses were nowhere to be seen the entire two hours we
were sitting on the tarmac - in fact, there was a bit of a mini-revolt, with passengers wandering around in the
aisle, and one was still in the aisle when we took off! Once we were in the air I used my call button, but nobody
came. After a half hour, one of my 30-something seatmates liberated a bottle of water for me (and a bunch of Jack
Daniels for himself and his buddy). Everyone's mood improved after that!
By the time we got to Atlanta, I had missed not only the plane I was scheduled for, but also (apparently) the
last one to Valdosta, period. However, the pilot had called ahead and asked them to hold the plane, and then he
personally went into the hold and got my wheelchair. He wheeled me to a porter and said, "take this woman to her
gate now," but two ground personnel intervened and said that all flights to Valdosta had left, and I would
have to stay at a hotel in Atlanta. By this point the pilot (who was already in a pretty foul mood) was simmering.
He explained that he knew the plane was still there, whatever the board said, and said "Do I have to take this
woman to her gate herself?" The porter was unhappy, but he took me - and, quel surpris, they were holding
the plane for me! As we all bustled out to the plane, we passed passengers coming back from having just loaded
unto another one - "our plane caught fire," they said, "hope you have better luck." Oh great. I struggled getting
down the stairs, then they pushed me in the wheelchair out onto the tarmac, and I had to struggle to get back up
the ladder into the plane. Finally I got to a seat - a single seat, so I could stretch my legs out in the
aisle, and for the first time in over five hours I was comfortable. Made it to Valdosta around 11:45 pm, and there
were people there to greet me and take me to the motel - but my luggage remained in Atlanta. Lights out at 1:51 am
with a 10 am wakeup call.
Thursday, March 4
Woke up at 10 am with a sore throat and feeling awful. Berating myself for such a stupid move as to try to
pull this talk off - but, here I am, and I'll gut my way through it. Can't get breakfast because it's in the lobby
- this is an old Hampton Inn with the rooms facing outdoors. I'm about halfway down the block of rooms, and the
sidewalk is broken with a small rise - there is no way I'm going to be able to negotiate that either pushing the
wheelchair (using it as a walker), or propelling the wheels with my arms. So I go without. Insult to injury - my
suitcase still hasn't arrived. Grump.
Suitcase arrives at 11 am - but they made me hobble down to the lobby to get it. I'm in a handicapped room,
but the people who work at this hotel seem oblivious. I quickly dress, then the people who came for my ride get me
something to eat, and I can get my pills in, and I start to feel better. Take in a seminar and a lovely rendition
of some scenes from Alice Walker's "The Color Purple" - it's exciting to be out in the real world! Then I give my
talk - on "Chronic Illness as a Feminist Issue: The Case of CFS/M.E.." I hit a home run, but afterwards I
collapsed. Made my way to a sofa in an extra room, but was soon awakened because it was against the rules to (a)
leave the lights out in there, or (b) sleep. I tried to explain my situation, and they expressed sympathy, but
said I would have to go back to my hotel if I wanted to sleep. Now how was I to do that? A student was about to
call a cab for me when someone came along with car keys and I begged for a ride.
Made it back to my room at 4 pm - very happy to finally be in bed with no responsibilities. In
sleep/TV mode. Later woke up around 8, ordered a pizza and some breadsticks and soda so I'd have something to
take pills with later on.
A terribly difficult day, but fun. At least it was a lovely day: high 67°
Friday, March 5
A beautiful day. Low 30°, but sunny with a high of 73°. A gentle warm breeze, flowers everywhere. This
was what I came to see.
Slept to 9:30, showered and washed hair. They picked me up at 11 for the conference: saw a nice session on
sociology of science and stayed for a talk after lunch. They were late getting me back to bed at 3:30 pm. I only
had an hour and a half to lie down, but that did help considerably.
Coming to pick me up at 5 pm for dinner with Kate Millet. My eyes and eyesockets - the left one in particular
- hurt. I fell back asleep after writing this, then there was a knock on the door at 5:30 and off I went.
Had a great time, forgot about my eye - listened to the lecture and went to a reception, where they had a
spare dinner waiting for me. Got back "home" in bed at 11:50.
Saturday, March 6
Had a lot of trouble waking up. Got up at 8 and took pills, but fell back asleep again. Up and dressed at 10 or
so. They came about 10:30. I did very well at the conference. They asked me to participate in a panel on the
state of the feminist movement, and I was able to speak coherently, answer questions without problems. But after
speaking, I was tired again, so I came back and watched TV, slept from 2:30 to 7:15.
What a wonderful time we had this evening! We went to the home of the organizer and her S.O., then sat
around laughing and talking like the old days when I was an undergrad at Oberlin, and later in San Francisco. I
was walking funny and talking weird by the evening, but nobody minded and neither did I - I just laughed as if I
was good and stoned (instead of massively brainfogged from CFS/M.E. and all the exertion). Another beautiful day
with the high in the 70s. Tomorrow go back to winter.
Sunday, March 7
Cold in Philadelphia, strong wind chill when we landed. High 44°, low 22° -- the wind chill at 10 pm was -
8°. Had to get up at 7 am to catch the first flight. Flying was as easy today as it had been a nightmare on
Thursday. No problems. They got me over to the other gate in Atlanta with a car, then used an elevator to get me
up to the terminal instead of shoving me at a flight of stairs like last time. I wheeled the chair myself to go to the bathroom and Starbuck's before the plane left for Philadelphia. The flight was crowded and uncomfortable, but mercifully short. Home at 4:30 in bed with my puppies and happy. I feel pretty good overall! Could the medicine be working already?
How nice to be in my own bed. Ahhhhhh. We all hung out in the king-sized bed and watched the NCAA tournament
picks - Delaware and Duke will be in Charlotte next week, and so will we! This will be a test of the meds....
Monday, March 8 -- 10th infusion
Woke up at 11 am and felt fine. Had a full infusion in 45 minutes, came back and worked on the Delaware high
school men's lacrosse schedule (Bob is chief assignor, and we have to put the schedule together ourselves from
whatever the coaches and A.D.'s feel like sending us ...) No serious repercussions, apparently, from the trip or
Happy 24th wedding anniversary, Bob and me.
Tuesday, March 9
Had to get up at 9:30 today for another try at the housekeeper coming. Forced myself to be dressed and coherent,
but I do not want to - I feel tired and achey all over. It's very cold today; woke up to the possibility
of 3-5 inches, but (to Carolyn's disappointment), it's only going to be flurries.
Spent the day working on Bob's lacrosse schedule. Not in bad shape considering. Got in bed by midnight.
Cold, but no snow. This has been one boring winter. High 33°, low 22°.
Wednesday, March 10
Slept until noon, then went downstairs, worked on the lacrosse schedule some more, and answered email. In bed at
11, lights out at 11:30. Bob has some sort of stomach bug and feels awful. Hope he's better tomorrow.
Lovely day - started out with flurries and a dusting of snow, then sunny and blustery, high 43°, low
Decided to go off Doxepin completely.
Thursday, March 11 - 11th infusion
Clear day but windy and cold, low in the 20s. Up several times this morning to deal with the dog and Bob. Up for
good at 8:30 am to shower and dress, and pack to go to Charlotte for the first round of the NCAA's - both Duke (our
alma mater) and Delaware will be there. Have to leave (driving down) right after my infusion. I'm very excited
about this. Bob and I used to do this type of stuff a lot, but the last couple of years I've been way too sick.
We made it! Maureen was ready, but we were a bit late to the infusion (blush). Left at noon, made it to
Charlotte through clear weather and little traffic, at 8:30 pm. In bed at 10 pm. High 55° low 26°.
Friday, March 12
Low in the 20s, high in the 50s; lovely sunny day.
Up at 10 am - a little hard to unbend my legs, but otherwise okay. Delaware has the first game against Tennessee.
I decided I would not take the wheelchair, but would walk like a normal person - because I wanted to be able to
sit with the other Delaware fans, and the seats were unreachable by wheelchair. Of course, I still had my cane,
but I walked down 25 rows to our primo seats behind the coach's wife. I had to move to the next section, however,
because everybody kept standing up - and I had promised Bob I would not keep standing up with everybody (because
he knew that would finish me for the weekend). I yelled and cheered and clapped along with everybody else, just
had to do it sitting down. It was close - the biggest gap was 10 at the end, and we led by 7 at one point, but
Delaware lost. We were now the sad section.
Back to the hotel and I went directly to bed and almost immediately fell asleep. Woke up an hour later
shivering all over, cold, took pain pills and got back in bed, lay there watching or listening to TV but did not
sleep. So hard to get dressed again - Bob commented that I had returned to "normalcy" (CFS normalcy) - and
I was glad I had obeyed his instructions and not abused the adrenaline rush this afternoon to stand up when
everybody else did. At 7 pm we went out with Edgar to the Duke game. This time I had to use the wheelchair - our
seats were close to the top, and I maneuvered 7 or 8 steps from the wheelchair down, then Bob put the wheelchair
back in the car. I enjoyed the Duke game, but could only make it through part of the next game - then I told Bob
we had to leave, Code Red. My glands and the back of my neck hurt horribly, and I ached everywhere. I am in bed
at 11 pm, tired and aching but happy that I had been able to do so much today.
Saturday, March 13
Terrible night sleeping - woke up almost once an hour with terrible nightmares, then would fall back asleep.
Finally up for good at 10:30 am, ate breakfast, felt pretty good. Took a bath, washed hair, got dressed.
12:30 pm, settled in to work on Bob's lacrosse schedule in bed. 12:30, lay down again and dozed on and off to 6:30
pm. Eyes are scratchy, but I probably ought to try to stay up a bit. Sitting up in bed, working on Bob's lax
again. 8:30, I've fallen asleep again. Bob woke me up with a great barbecue dinner at 9, then I changed and was in
bed for good at 9:20. Overcast, high 51° low 36°.
Sunday, March 14
Bob woke me up at 9:30 with breakfast. Going to head into a "wintry mix" tonight - ugh. Don't feel bad, but it's
hard to move. Slept well last night, finally. Low here in low 40s. Will head to Duke game at 11, try to be on
the road by 2 pm. ETA tonight 11 pm.
Left at 1 pm at half time with Duke up by 30 points. What an awful drive. Rained, pouring. My neck hurt, I
felt nauseus, and through most of the drive the left side of my head hurt as if I had a migraine. Thank goodness
there wasn't any sun! Just south of Washington the roads got slippery, and from the Anacostia Freeway north it was
all snow. I-95 was stressful, and the Delaware roads hard to navigate. We had real trouble getting into the
development and parked the car sort of crossways in the driveway, but we made it at about 10:30 pm. In bed at 11
pm. Migraine and nausea gone, but tired.
High here in Delaware about 38°, 3-5 inches of snow on the ground.
Monday, March 15 - 12th infusion
What a disappointment! Instead of snow when we woke up, it was raining. How Delaware. Carolyn ended up going to
school on time, and I'm heading off for a 11 am infusion. At least Bob's college lacrosse game was cancelled.
We worked on lacrosse after the infusion to about 3:30, then I seriously crashed. I had also changed the
kitty litter - did I do too much? Or is it just the repercussions from the weekend? Stayed upstairs from 3:30 to
the rest of the evening.
We used a vein in my right hand today - Maureen doesn't want to keep using the same vein in my left elbow.
Good that she could find an alternative vein today, but UGH, being stuck in the back of the hand!
Ate at Buckley's after the infusion and felt better. I enjoy my little lunches with Bob after the infusion;
it's nice to have the time to spend with him now.
Tuesday, March 16
9 am and I give up trying to get any sleep at all with so many lacrosse phone calls. Have to get up anyway
because Nancy is coming at 10 to clean the house. Feel awful. Hand is okay, but the rest of me - UGH. Must get
dressed and go downstairs.
Worked on Bob's lacrosse when not spacing out. Got phone call that I must finish the Jack Greene paper by
next Monday; will have to Fed Ex it to the publisher. I am too tired for all this! In bed around midnight.
High today 49°.
Wednesday, March 17
Lacrosse phone calls woke me up at 10. Decided to just go ahead and get up and get as much done as possible.
Beautiful day, supposed to go up to 60s - high ends up 69°.
Faxed (with notes) 27 lax schedules - by 5 pm have a monster right-sided headache. In bed in the dark for
rest of evening.
Thursday, March 18 - 13th infusion
Still feel crummy when I wake up - plus my back hurts. But, drag myself out of bed at 10:30 am to shower - oddly
enough, I felt much better afterwards. Had infusion and ate at the Pit, then came home and worked on lacrosse.
Should be working on Greene paper but just too tired to think. Come upstairs around 5:30 to lie down and rest.
Took a muscle relaxant at 6 pm for my back. Went downstairs at 7:30 - watched TV and played a little on
internet, but brain still very foggy. Lights out at 12:30.
Friday, March 19
Mom woke me up at 11 - took until 1 to get myself organized and dressed to go downstairs. Feel good, but very
nervous about that paper! Worked on the paper, easy going, doing well - then I got a present from a friend and
went on internet to thank her, and the next thing I knew it was 2:30 am. I remember turning on the TV at 4 am,
and then the next thing I knew it was time to get up. DOLT!
I did put in about 4 hours on the paper. I can do this, I say to myself. But when? I wasn't tired
or confused today, but I kept getting distracted - not so much a brainfog problem as an ADD problem. At least my
back felt fine today.
Saturday, March 20
Notice that I seldom use my cane any more. I got up (with difficulty) at 10:30 am. Took a shower and washed my
hair and got dressed. My family (brother George, sister-in-law Marie, and my parents) came up to see Carolyn in
the matinee of "Cinderella" - she plays the Wicked Stepmother in the Rogers and Hammerstein musical, her last high
school performance, sniff. Went to Buckley's for lunch, then to the play, then home for about an hour and a half
while I lay flat on the lounge chair and answered internet messages, then Bob and I went back to the 7 pm, and
last, performance. Much standing up, no wheelchair and no cane! I noticed that I was keeping up with George and
Marie rather than hanging back with my Dad - definitely improved. They seemed more aware of it than me, because
they haven't seen me since Christmas. Oh my, Carolyn was good. A scenery-chewing role if there ever was one, and
boy did she have a good time with it. After the performance little children hung around to get her autograph; it
was cute. Went back to Buckley's - at this point I was getting tired and wished I had my cane with me - then at
home and lights out around midnight. A lovely day. I know I could have only done about half of all this back in
Sunday, March 21
Got up at 9:30 because we have tickets to see Duke play in the Eastern Regionals this afternoon in the Meadowlands
- two-hour drive, one-hour parking lot tie-up, what a mess! Turned out just fine, though. No problems parking
once we got there, nice wheelchair accommodations (they let us swap our tickets). Had a great time, yelling and
screaming. Duke won. On the way home, hustled into the rest stop because it was raining, but I did keep my cane.
Got home at 8, came upstairs to avoid temptation of Internet and to work on paper. Had a nice half-hour chat with
Carolyn about her performance and the party afterwards. Feel good, feel happy. Finally turned the lights
out at 3 am. High 53° at 11:30 tonight. Torrential rains that started mid-afternoon supposed to continue all
Monday, March 22 -- 14th infusion
Up at 9 am - terrible night, couldn't sleep at all. Must get this paper done, then I can crash. Push and crash.
Bad behavior for a PWC. Let's just see what happens.
Worked all day on paper, broken up by phone calls (including a political CFS one, sigh) - went to bed,
exhausted, at 10:30 pm.
Tuesday, March 23
Up at 6 am, dressed at 6:30. Tried to write, but kept falling back asleep. Didn't really start writing until
By 3:30 pm I emailed the dang thing out to the UK. 36 double-spaced pages with no footnotes.
Interesting - I could read some, but when push came to shove, I couldn't read enough to go over the drafts I
had written and edit them down to a single paper. I ended up writing yet another first draft, combining some of
the paragraphs already written, but not able to really edit it into second draft quality. My brain has far to go
to get back to where it used to be. Happy that I finished the paper, sad that it was such a struggle.
Wednesday, March 24
Paybacks are hell. Feel totally rotten. Stayed asleep (within telephone interruptions) until about 1 pm.
Overcast, then rainy; high 43°, low 30°. I tried to internet a bit, but too tired. Felt terrible all
day. Went to bed with a sore throat and stopped up nose - now that's a change. I haven't had cold-type symptoms
since my CFS/ME crash on October 24, 1994. Fell asleep sometime after midnight.
Thursday, March 25 -- 15th infusion
Up at 8 am - have to shower, pack, get infusion, then fly to Florida. Feel like hell but will be better when I get
down there. The low this morning here in Delaware was 26°.
Infusion done by noon, made it to BWI (Baltimore-Washington Airport) by 1:30 for a 2:50 pm flight to Tampa.
Flight went fine - rental car took a while, but I just sat in my wheelchair and veggied. Got to Eric's place in
Orlando at 7:30. We're staying in a rental condo at the time-share where he works running the water park. Went
out to eat like a normal person, sat in the car while Bob went to the store, back in room at 10 pm. They had not
made the beds, so I did it myself without fitted sheets! Small thing, but very proud of myself. 11 pm, in bed
watching TV, lights out soon. High in Orlando today was 84°.
Friday, March 26
Up at 10 am - the kids are noisy around here (naturally) and it's moving day for the weekly renters. Can't find
Bob - going to walk over to the pool to see Eric.
Drizzling, temperature around 70. Went back to bed. Woke up at 1 pm when a maid showed up. Dressed and went
out walking - perhaps bad, but enjoyed it so much. Dipped feet in the water, walked across a little bridge to a
beach and laid there for a while. It felt so good to walk. Eric brought me back over and we went to
Mickey D's, then came back and did some laundry. It is so much easier to live in a one-floor apartment; I can do
things that I could never do at home. I laid down for a nap at 3:30. Up at 5, took a bath, ate dinner at Eric's
picnic, then Traci and I went shopping for an hour without my wheelchair! My legs feel pleasantly achey.
Saturday, March 27
Woke up at 9:15 feeling pretty good. Legs sore from all that walking yesterday, but otherwise okay. Can't say I
woke up naturally - some noise woke me up, and then I knew I had to stay up to get ready to go to the NCAA's. But I
haD no problems getting up. Will have to bathe and wash and dry my hair. Then we'll leave between 1 and 2 pm for
St. Pete's for the Duke-MSU game, first game in the NCAA semifinals.
Had a great time at the games. Really wanted my afternoon nap, but got over it. Stayed in wheelchair the
entire time. Back home at 1 am. Whew. Duke won! And we got two more tickets for the championship game Monday
night. High 74°, low 55°.
Sunday, March 28
OH, I did not want to get up! Wanted to sleep, legs ached. But, made it up about 11 am, took a bath and
got dressed, drove with Bob and Eric to the Detroit Tigers' spring training stadium in Winter Park to see the
Phillies play the Tigers. I used the wheelchair or I would have been totally out of luck, because there was
nothing but bleacher seating, and that takes too much leg muscle control for me. Wonderful to sit in the sun,
feel a light breeze, watch some baseball.
Went back and slept from 5-7 pm, talked to Traci to almost 8 pm. She drove me to dinner - we changed
restaurants and I walked in the lovely evening air, not far, maybe 50 feet, but it felt great. After dinner I
walked back to the car - Eric worried I'm doing too much too soon, but it felt too good not to do it. Back at
"home" by 10, in bed at 11 pm. Been keeping place straightened up, washed and put away clothes. I feel good.
It was a beautiful day, high 79°, low 50°.
Monday, March 29
Didn't go to sleep until 2 am (watched a movie). From 7-10 am, series of knocks on the door and phone calls kept
waking me up, took pills at 9 am, fell back asleep, awake for good at 10 am. Took a bath and washed hair, then
packed. We took everything over to Traci and Eric's, then I rested and snoozed for a couple of hours. Returned
and got Traci and Eric at work, drove to St. Pete's, arrived very early for a 9:15 game. I sat in the parking lot
and read newspapers for a couple of hours while they strolled around and saw all the hoopla. Used the wheelchair
(happy to) - had a good game, but (sigh) Duke lost. Got back to Eric's at 1:15 am, lights out 1:30 am.
Lovely day, high around 80, low 50.
Tuesday, March 30 - 16th infusion
Woke up at 5:45 am - ugh! I was awake and okay through the plane ride, but the car ride from BWI to Dr.
Bellesorte's was hellacious. I drifted in and out of consciousness, unable at times to tell the difference
between reality and dream. I was supposed to have my eight-week physical, but I was too exhausted, so we
postponed it to Thursday. Then we will have to come back up Friday for my next infusion. Bob took me home and
plunked me into bed - I immediately went to sleep. Up for dinner in bed, felt better. Fell asleep early again.
Very cranky about having to try to do that Karnovsky Scale - it just doesn't fit. Finally decided it was about a
Wednesday, March 31
Today was a Blue Moon - the second this year.
Spent the whole day in bed today, and still my eyes feel scratchy at 11 pm. Tender points in my hips hurt,
common when I stay in bed all day.
Return to the top