Ampligen Diaries
by Mary Schweitzer
Copyright © Mary Schweitzer 1999

February

March

April

May

June

July

August

On October 24, 1994, I drove to my office as a professor of history at Villanova University to finish grading a set of essay exams that were long overdue. I sat down with a stack of bluebooks in my lap. Hours later I was still there. I was sitting up, but I seemed to have been in a coma. I could not understand anything in the bluebooks; and at first I could not even stand up. I thought l was paralyzed. On December 26 I was diagnosed with Chronic Fatigue Syndrome (CFS), known in England and Canada as Myalgic Encephalomyelitis, or M.E. (I will generally refer to it as ME/CFS; the British name M.E. is much closer to what I feel like than something called CFS), and the World Health Organization's ICD coding for both M.E. and CFS are under neurology, in G93.3.

For four years I deteriorated slowly - from walking with a cane, to shuffling slowly with a cane, to requiring a wheelchair. I could not read anything of any length and understand what I was reading. I could no longer work on the research in my computer. I could not drive. I could not cook or do dishes or do laundry. I was an invalid.

Although it was hard for me to read much, I could write a bit. And I could function somewhat using internet. I've written a few essays about what it was like with ME/CFS, which you can find at on the web at "Living with ME/CFS." Five years later, I was diagnosed with R.E.D.D., or RnaseL Enzyme Dysfunction Disease, a condition that will prove to be the cause of ME/CFS for an unknown number of those who have been so diagnosed - myself included. Links to more information about R.E.D.D., or the RnaseL Factor, can be found here. For links to general information about CFS/ME, to go The CFIDS/ME Information Page.

February 4, 1999, I began treatment with an experimental drug called Ampligen. These are my Ampligen Diaries. I expect to be on it a full year, at least, and it will cost my family $40,000 for the drug, the infusions, the doctor's visits, and the testing. I wish there was a way for insurance to pay some of this cost, but this is the only way the FDA will release it right now. I feel very grateful that my family has been able, and willing, to fund this protocol, and I hope it becomes available to others soon.

Almost eight years have passed since I wrote these pages. I am still on Ampligen, although the total cost for my family is now $20,000 a year. The diaries began to get too personal and too difficult to edit down for the web. So, for a brief description of what has happened since the last entry here, go to Ampligen Diaries Coda: 1999-2007. I can be reached at "me-cfs(at)comcast.net".

Mary Schweitzer


Situation at start:

Meds - Cytomel for Hashimoto's hypothyroidism (antibodies attacking my thyroid; developed it a year after CFS/ME collapse); Florinef for Neurally Mediated Hypotension; Zoloft (200 mg./day) for secondary depression; Ultram (100 mg. 4x a day) pretty much round the clock for pain; Ritalin for lifelong ADD (20 mg. 1-3x a day); at night take 1 mg. Klonopin for restless leg syndrome and 20 mg. Doxepin to fall asleep. Also potassium, magnesium, Vit. A, zinc, Vit. E, B6, Centrum, calcium, salt tablets (for NMH), evening primrose oil, and cod liver oil. And at least 64 ounces of water a day.

Physical Condition - I weigh 220 pounds (had been 140 pounds at 5'6", gained 50 pounds the first six months of the collapse, then 15 pounds over the next 3 years, 15 pounds when I had trouble with my thyroid meds in the fall of 1998 - total of 80 pounds. A major source of grief for me personally - also just makes everything harder physically. But exercise simply impossible - even before my collapse, I had ceased to be able to operate in aerobic metabolism; my pulse spiked from resting to anaerobic immediately.

Level of disability - Karnofsky Scale 30. Walk very slowly, more of a shuffle than a walk because I can't pick up my feet; have to use a cane for balance. When I leave the house, we use a wheelchair. I need a keeper because I can't use my arms to propel the wheels (and because often I have no idea where I am). Enjoy going to sports events because I can slouch down - but can't sit up to go out to dinner at restaurants. Bob and Carolyn often go out and bring me a doggie bag. I can't fix myself dinner (except grab some crackers or a bagel and a slice of cheese); can't wash dishes; can't do laundry; can't take out garbage - if Bob and Carolyn weren't there to take care of me, I could not live without nursing care. Perhaps the worst part is that my brain is so severely affected. In addition to the balance problems, my eyes are often too blurry to focus; I have mild tinnitis and cannot handle bright lights or loud noises. I cannot read my own research papers; I cannot focus on a printed page long enough to remember what was at the top when I get to the bottom. I can't even read the newspaper. Reading was not only my favorite hobby - it was my bread and butter as a historian. I have always had trouble understanding verbal instructions; now it is worse. Can't remember a phone number as someone is telling it to me over the phone - have to ask them to give me two numerals at a time. Then there are the weird brain glitches - most recently, I tried to change the paper towels and found myself frustrated because the roll of towels wouldn't fit in the Mr. Coffee - apparently I had carefully taken the coffee pot out and was trying to replace it with the paper towels!


February

March

April

May

June

July

August

February 1999

WEEK 1

Thursday, February 4, 1999 - 1st infusion
Two years after Marsha first asked if I would be interested in Ampligen; 16 months after the first estimated start date (October 1997) ... today, I finally started Ampligen. It felt funny not to have to try to get it any more. I'm actually starting.
         So now I enter a new life: 2 infusions a week, for at least one year = 104 infusions. One down, 103 to go! And, for the first time in over four years, HOPE.
         Had to be there at 9:30 am to have my blood drawn and sent to Ablashi's in Maryland (I already had tested HHV-6 active - HHV-6 DNA in my cells - once; and tested positive for the 37kDa, the defective RnaseL; this is just a double-check. Then we had to fill out tons of forms, and waited while Traci got her infusion. Bob took my picture.
         I thought it would burn or something - but I hardly felt it when she put the needle in, and I couldn't really feel the infusion at all. They had been teasing me from the Nevada group about whether I would turn red or green - I told them I turned plaid. The first infusion lasted an hour. I ran a low fever afterwards - 99.2° F -- and that was that. I went home and went to sleep.
         I spent most of the rest of the day either asleep, or dozing with a movie on TV. Hard to tell whether I slept so much because of the infusion, or because I was so excited about finally starting Ampligen! But I spent most of the rest of the day either asleep or dozing, with a movie on TV. I actually was alone all night, because Carolyn had to go up to NY for a college interview with Bob - but I did okay on my own (well, me and Kelly the golden retriever, Maggie the Irish setter, and Skidmore the cat). Sometimes I'm too sick to go up and down stairs, and I had been prepared to spend the night downstairs, but I didn't have to.

Friday, February 5
Slept until noon. Went downstairs to let dogs out and bring water up. Came downstairs for a few hours to see Carol's Senior Ball dress (she looked lovely), but went back upstairs by 6:30. Temperature fine, 98.8 . I'm sore everywhere - hurts to handwrite, knees hurt, back of neck hurts, head hurts - yeah, this is CFS/ME all right. Fell asleep around midnight.

Saturday, February 6
Slept to 10:30, then dozed on and off to 2:30. Walking slow. Came downstairs around 4:30 and did some internetting. Neck hurts, legs feel heavy, but content.

Sunday, February 7
Odd day. High 40° F, low 32° F. Rain, sleet, snow, rain. A little better today, came downstairs at noon, watched TV, did some internet. Suddenly crashed at 8:30, asleep by 9:15 pm.

Monday, February 8 - 2nd infusion
In a deep sleep at 12:45 pm when Bob woke me up to go to Dr. Bellesorte's for my infusion. It takes precisely 21 minutes to get there. Maureen used the same vein because she couldn't find another good one; the needle pinched a bit, everything else went just fine. Infusion time reduced to 45 minutes. Temperature 98.8° to start, 99.2° at the end. Temperature 99.4° later that evening.
         Internet for a couple of hours, but not such a good idea, feeling whoozy. Went back upstairs and laid down watching movies. Bob is in Baltimore for a lacrosse meeting. Carolyn surprised me with a wonderful treat - she got flounder florentine from Il Giardino. Whoozy but okay. Knees hurt.

Tuesday, February 9
Awake at 11 am, in bed until 2 pm. Temp 99.2°. Worked on paper for Jack Greene for an hour or so and doing well, but then ran Dr. Koop's Community chatroom online from 4-5 pm - totally exhausted after that. In bed at 10 pm.

Wednesday, February 10
Tried to get up at 11, even took my morning pills, but fell back into a sound sleep again. Woke up finally at 12:30. Took a shower (have to use a shower bench; can't stand in the shower because of Neurally Mediated Hypotension, or NMH). Wrote to 5:30. Went down to University of Delaware to see the Hofstra basketball game, in my wheelchair of course, watching from plate glass window up in the Carpenter Club. In bed by 10:30, watching "Animal House."


WEEK 2

Thursday, February 11 - 3rd infusion
Reduced time for dosage - tolerated it fine. Went to Charcoal Pit afterwards for a vanilla milkshake and pit hamburger - not good for me, but fun. Did some internet, went upstairs, fell asleep around 8:30 pm. Carol woke me up to talk about school; fell right back asleep again afterwards.

Friday, February 12
Wanted to be awake at 11 to watch impeachment vote, but very difficult to wake up. Awoke naturally at 5:30 am to take pain pills (Ultram; been on it a year). Carol has a day off - she's gone off on a shoot with Teleduction. Record breaking high, 70° and gorgeous. Fast moving cold front coming through tonight; big black thunderstorms clouds - high winds, no thunder. Low tonight: 32°
         Spent whole day in bed today. President cleared by Senate today: Article 1 (abuse of power) - 10 Republicans bolted; Not guilty 55-45; Article 2 (obstructing justice) - only 5 Republicans switched sides; tie vote of 50-50. Impeachment over, thank goodness. But now what will I watch on TV?

Saturday, February 13
Snow flurries. Woke at 11 with difficulty, went downstairs (trying to finish essay I promised a long time ago to Greene and Pole for a book on the American Revolution); wrote 1:30-4:30 pm, came back upstairs and rested, dozed, in bed. Got up at 6 pm and washed hair, using bench; went to UD (University of Delaware, where Bob is a professor of finance) basketball game in wheelchair. Sat in wheelchair at my usual spot at the plate glass window in the Carpenter Club - can stay comfortable with a great view of the court. Miss sitting with my friends, but people are nice to me up here. UD won.
         I sense a change - must be imagining it; it has to be too soon. I get physically very tired, and tire faster. I want to sleep all the time. I feel I need to stay in bed all the time. But I'm also getting these windows of lucidity, brief intervals of clarity. I'm actually finishing this essay for Jack. It's not easy, but I'm able to focus enough to do it.

Sunday, February 14
Valentine's Day! Oh boy, chocolate. Very hard to get up, so I stayed in bed with Maggie (the Irish setter) and Carol (my 18-year-old baby girl), watching TV, talking. Pleasant, fun. Then after 3 wrote on Greene paper and then went on internet - a big mistake Overdid it. Eyes are killing me. Back of neck hurts (what I used to call the feeling that somebody had whapped me in the back of the head with a baseball bat ...), lower back aches, I think everything hurts. Don't want to ever get out of bed.

Monday, February 15 - 4th infusion
Woke up fine. Infusion went fine. Went to UD library with Carol and Bob (in my wheelchair of course). Then a UD-Vermont basketball game. Only tired at the end.

Tuesday, February 16
Stayed in bed all day, working on paper and dozing on and off. Forgot Dr. Koop's chat entirely. May have to bail out of that; I can't remember to do it. Got hair cut 4 inches, foil-wrap; 4-7:30 pm at hairdresser's, surprisingly exhausted after that, went immediately to bed.

Wednesday, February 17
Inexplicably tired - from paper? Beautician's? Supposed to wash hair today, just can't. Feel crummy, out of Ultram; hoarding it for tonight in case Bob and Carol are busy and forget to pick up the refill. Weather damp and grey, fronts colliding.


WEEK 3

Thursday, February 18 - 5th infusion
Big day today! First full dose infusion. Got up at 10:45 am and able to wash hair; much easier with it shorter. The infusion took an hour; we brought "Ghostbusters" to watch on the TV Dr. B. keeps for showing informational videos. Maureen tried my right arm, but again could not find a usable vein, so we returned to that same good vein in my left arm. Otherwise, infusion went easy, snug in blanket, watching TV. Bob slept in another lounge chair (which is getting to be his routine). Hit Buckley's Tavern on the way home and had an omelet. Came home and climbed in bed immediately, slept two hours. Then went to Flyers in wheelchair. They have great seats for the handicapped.
         Crashed suddenly, had to leave after 2nd period (but Flyers playing terribly anyway ...) Had to lie down in back seat all the way home. Barely made it upstairs when I got home.

Friday, February 19
Tough day physically, but able to stay in bed almost all day so okay. Had to go downstairs four times: for coffee, water, to let dogs out, and to get pills. Spent the day listening to movies; opening eyelids too much work. Alternating dozing and resting.
         So tired.
         I feel okay while lying down - but when I walked around everything hurt like the first day after the first ski trip of the winter. Speaking of which, Carolyn left today for a ski trip at Okemo. I miss skiing.
         Skipped lunch - just too hard to go back downstairs - Bob came home at 6 and made me a melted cheese sandwich. Then we snuggled in bed and watched "Cousins."
         This crash isn't anything that I haven't been through before - these days typical once or twice a week with CFS/ME - but I'm a bit disappointed. Hope I won't be like that all the time now with the full infusion.

Saturday, February 20
Lacrosse pre-season has started: several people called this morning trying to reach Bob. Forced myself to get up at 11 am to eat, take pills. Worked a little on Greene paper in bed, but mostly watched movies or dozed. Tired, achey, fluish, the back of my neck hurts (that baseball bat has been here again) and my front lymph nodes feel like two golf balls. 6:45 pm -- I feel like homemade cowpies. But noooo, it gets worse. Now the golf balls feel like they're going to explode.
         Eric and Traci called; set date for wedding on September 5, my parents' 58th wedding anniversary. I want to walk at his wedding. No, I will walk at his wedding. I will not use the wheelchair!

Sunday, February 21
More phone calls for Bob this morning, but I fall right back totally asleep. Then I woke up suddenly at 1 pm -- really woke up. Eyes still feel scratchy, but I am awake - not drowsy.
         Went downstairs around 4:30 - had so many messages to answer on Internet! Of course did too much. Farewell lucidity, goodbye feeling better. Back upstairs at 11 and asleep.

Monday, February 22 - 6th infusion
Dr. B. and Maureen thought I had a strong reaction to the full dose, so I stuck to one hour for the infusion rate. Able to internet a little this afternoon, in bed all evening.

Tuesday, February 23
Very cold today. Low about 10°. Worked on Greene paper in bed for a few hours, returned to it later for an hour at 9 pm.
         I had the sudden realization that I can read! I was going through Higgenbotham's account of the Revolutionary war effort, and suddenly realized I really was reading. I haven't been able to do that in over four years. Only for a short time; I got tired and had to quit. But ... I was reading a book! I can read again.

Wednesday, February 24
Cold outside, some flurries. Watched news on TV while everyone getting ready to go off to school and work; turned it off at 7 am and slept until 12:15 pm. (Woke up briefly for pills, but fell back sound asleep again). Worked on Greene paper on and off all afternoon and evening. Dozed some.
         Carolyn came in late, sat on my bed at 9 pm and we talked about her research paper on the studio system - I can communicate! It was fun. I finally chased her off to bed at 11 pm.


WEEK 4

Thursday, February 25 - 7th infusion
Flurries again today. Did not sleep well; kept trying to remember to wake Bob up for something. Washed and dried hair. Tried a new vein in my right arm, but it blew immediately. Back to the good one in my left inside elbow. Dr. B. seems a little worried about my condition. I'm not. He was not my doctor before Ampligen, and I don't think he really was aware of how sick I was. Except for dozing so much (which I rather like), no symptoms or crashes so far are new for me.
         Had lunch with Bob at Buckley's - but I'm tired and losing my balance again. I left the cane in the car; wish I had brought it in with me. We get a booth so I can put my feet up. On the way out, I have to balance on chairs and tables to get to the door - Bob sprung up to his feet quickly and bolted for the car to get it started, didn't see me struggling behind him. Life as it used to be.
         When we got home, Carolyn was already there with a 101° fever. Her high school didn't have Dr. B's phone number, so they had made one of Bob's secretaries come get her! Carol and I were both in bed by 3 pm; lights out for me at 3:20.
         Feel woozy still. Lying in bed in a place between awake and asleep, I would feel sudden fear, feel alone, fearful, want Bob to be there. This is a new experience. A feeling of sudden terror. I wonder what is going on with my brain.
         The mail comes - Great news! Carolyn was accepted at University of Southern California, her first choice because she wants to study film. I'm so very sleepy, but she's so excited that I can't miss this moment. We sit in my king-sized bed together going through the housing options to rank her choices so we can get the request out as soon as possible.

Friday, February 26
I woke up at 5:30 am and helped Bob get ready for his bus trip (with his finance undergrads) to New York City. Legs heavy but feel okay, fall back asleep as soon as he leaves. Tried hard to get up at 10:30, then 11 - so hard to get up.
         By noon I'm fully awake. Carolyn is here in bed with me watching the Food Channel. I'm in very good spirits, sitting cross-legged, filling out her acceptance form for USC. This is the sort of thing Bob had to do before.
         At 1:15 we both went to Dr. Jaffe's (for her) and then the drugstore. I brought a book to read (Beyond the Covenant Chain, for my Greene paper) - and I read it instead of just spacing out as usual. Got home at 3:30 pm, helped Carolyn fill out applications and wrote the checks. She had to write little essays for the housing requests, and we both got it done without Bob. She drove us to the Yorklyn Post Office and went in the post office with Carolyn instead of waiting in car. Then home and in bed at 5 pm.
         My legs feel so heavy -- but otherwise I feel pretty good. Did stutter and stammer a bit when the doctors asked me questions at Jaffe's office. It interrupted my brief feeling of normalcy. Legs feel uncooperative.
         Cut back to 10 mg. Doxepin; no trouble falling asleep.

Saturday, February 27
Up at 9:45 am, have to wash hair so we can go to AmericaEast basketball tournament at Delaware this afternoon. My body rebels at the thought of getting up, but after some resistance it finally obeys the command to get out of bed.
         Got to Carpenter Center at 11 am - had rolls and coffee with friends - watched half of Maine/Hartford game, then got too cocky and walked (with cane for balance) to a table to chat with some friends -- afraid to move wheelchair or I'd lose my place at the window. Hobbled back to wheelchair, legs very uncooperative now, full Parkinson's shuffle. Stayed through UD-Towson State game, a blowout. Had a good time but headed straight home to bed; in bed by 4 pm, spent rest of afternoon and evening dozing and sleeping. Bob stayed home so I wouldn't have to leave the bedroom and would get plenty of rest.

Sunday, February 28
Poured today. I guess we're lucky it wasn't a blizzard. Got up at 9:30 again to go back to the basketball games. UD won convincingly; nothing now but the finals. Very tired when I got home, but had to go on computer to finish typing Carol's application for a scholarship; took some Ultram and felt better. So I went online - a big mistake because I was so backed up on messages. Didn't get to bed until 2 am.

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February

March

April

May

June

July

August

March 1999

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.


WEEK 5

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 the infusion.
         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 22°.
         Decided to go off Doxepin completely.


WEEK 6

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.


WEEK 7

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 January.

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 night.

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 8 am.
         By 3:30 pm I emailed the dang thing out to the UK. 36 double-spaced pages with no footnotes. Whew!
         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.


WEEK 8

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 50.

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.

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APRIL

WEEK 9

Thursday, April 1
Had to get up early for 9 am appointment with Dr. B. Despite all the time in bed yesterday, getting up is excruciating. Woke up at 7, fell back asleep; ate and took Ritalin at 7:45, fell back asleep; finally got up at 8:10, showered and washed hair, and left. Feel okay now, but still so sleepy. Came back, downloaded files from about 11 to 2 pm, back in bed to sleep, just wanted to sleep. Slept until about 5 pm, felt better. Stayed in bed through rest of night. My hip pointers hurt. I took a muscle relaxant, it helped. Laid in bed, feel like I'm recuperating. Not a permanent invalid, but recuperating. Not so bad, I guess. Dinner not until 10 pm when they brought some stuff home for me to eat; lights out at 11:30 pm. Rained all day, high 57° low 46°.

Friday, April 2 - 17th infusion
Carolyn is taking me to get my infusion today. Up at 8:30 (got my times confused), but feel good - think I finally got enough sleep and bedrest for a while. Now the problem is how to integrate movement of some sort, and improve my diet, I think. Carolyn and I ate at the Charcoal Pit (not a good step toward improving my diet, but what the heck.) Back home at 1:30 pm. I have to sit and wait for Bob to get home to take Kelly, the 10-year-old golden retriever, to the Vet's, probably for the last time. The bone cancer in Kelly's face has spread to her left eye socket; it's just is too awful; we have an appointment at the Vet's at 4:15, and I know when they see her they are going to want to put her to sleep. Bob is really struggling with it - how can we call her cheerfully to get in the car, knowing we're going to go kill her? Fortunately, the vet had a talk with him and explained how much pain she must be in. Kelly went softly. She was the perkiest I had seen her in a while, and it was hard, but the Vet was convincing that it was cruel to wait any longer. I sat on the floor, and she lay with her head in my lap. I told her about the Rainbow Bridge and her old friend Rosie, our first Irish setter, waiting there for her. They gave her the shot; she let out a sigh and her head fell - totally relaxed for the first time in I don't know how long. It felt like she was relieved, that we had given her permission to go. She had left us. My poor, dear, big-hearted golden Kelly.

Saturday, April 3
Woke at 9:30 or 10; not out of bed until 11. Bummer: Carolyn did not get into the film production major at USC. But that doesn't mean she still can't study film, and transfer in when she's a junior. Still, she's very disappointed, and so are we (for her). Over Carolyn's protests, I walked down to the bottom of the cul-de-sac (about a half block, but a fairly steep grade) and then back up the hill to our house. Boy was that a bad idea. I was wheezing by the time I got home. I guess I can walk a bit where it's flat, but no hills.

Sunday, April 4 - Easter
Woke up at 11, saw what the Bunny left, and went back upstairs to bed. Carolyn was going to take me to church, but I had blown it yesterday by trying to take a walk on the hill and I couldn't get out of bed. Finally went downstairs at 1:15 pm. Feel bad because I can't go to Easter Brunch with Bob and Carolyn. Watched TV, did some Internet, came back upstairs to sleep some more at 4:30 while Bob went to Newark to buy a paper. Went downstairs at 8 to eat dinner, then stayed too long. Not back to bed until 1:30 am. Have to get more disciplined. Lovely day, though some rain - high 79°. But didn't feel much like a holiday.

Monday, April 5 - 18th infusion
Opening Day! Woke up at 8:45, ate and took pills, great difficulty getting out of bed at 10 am; hips hurt badly.
         Got infusion and made it to Camden Yards for opening day of the season without any problems. We sat two rows behind the visitors' dugout - great view. This seat would have been impossible for me last summer, but now I can walk down the rows and back up again. We had to park way out in the second handicapped parking lot - no way I could have walked it, so Bob wheeled me in with the wheelchair, and all I had to do was make it down to the seats.
         It was cold when the wind blew, but the sun was warm. Carolyn sat with me - Janelle had come with us, too, and she and Bob ended up sitting all over the park. We ate at an Italian place on the way home. I didn't feel good, but it wasn't a Code Red at least. (Code Red was the family name for Emergency! Mom has to get in bed ASAP.) All I wanted to do was to go to bed. But when we got home, there was Carol's acceptance letter from Berkeley. My adrenaline was up, so I went online and looked up info on Berkeley to show Bob. Went to bed at 1 am; had forgotten Nancy comes on Tuesday to clean the house and I'll have to get up early.
         I was doing real well when I was careful to get as much sleep as I wanted; now I've been trying to do too much, not getting enough sleep, and I feel a bit messed up again.

Tuesday, April 6
Sort of wake up at 9:30, made myself get up and get dressed at 10:30. Tired from yesterday, but I'll sleep l ater. Had to go with Carolyn take Skidmore the Cat to the Vet's (he got in a fight again); so much for expected afternoon nap. Feel so very tired and sleepy. I feel like the disease has thwacked me for my insolence in thinking I was better - like the foot of God in Monty Python had come down and squashed me.

Wednesday, April 7
I was doing better today, but then I had to clean out the cat box and dump the heavy kitty litter out, carry it all downstairs, then I was up and downstairs with the cat or the dog, and now I'm exhausted. This is frustrating. Carolyn is on break, but she says she has to work at Teleduction. Bob of course has lacrosse, and he refuses to deal with the cat anyway (it was Eric's but we inherited it when Eric and Traci moved to Florida). I am so tired. I want to rest. Have to admit the day was lovely - at least from the inside looking out. High 72°.


WEEK 10

Thursday, April 8 - 19th infusion
Woke up at 10:30, have to go for infusion - got myself coffee, but came back upstairs. My back hurts. 11:15. Bob will be here soon, I must get dressed.
         Got infusion, ate at the Charcoal Pit. Okay, just really really tired.
         Realize that I haven't had Vitamin E in a while - maybe that's it. Come home and try to work on Bob's lax schedule, but just too tired. Lie down and doze from 3:30 to 6 pm; feel much better; get dressed to go to Flyers in my wheelchair. They are winning in the 2nd period, and I feel crummy, so we come home. Gave Skid his medicine. 10:30 I am in bed. Grab my pills - then realized I took the wrong batch; I took tomorrow morning's pills instead of my night pills - which means I took Ritalin! Oh no. I can sleep on Ritalin during the day (in fact I frequently do) - but at night my body shifts, and then any Ritalin at all will keep me up all night. Same with caffeine.

Friday, April 9
Should I be surprised? It was very difficult sleeping last night. Then at 8 am, I took my evening pills from last night to make them up - plus accidentally took a second dose of Klonopin and Doxepin again. We'll see how it all turns out. I feel fine right now.
         It is raining, raining, and cold, then pouring later, twister warnings. The temperature drops 40 points. High was 80° yesterday; high today only 67°, and that was at 1 am in the morning; temperature continues to fall all day until it hits 44°.
         We were going to see the O's tonight, but not with all this rain and cold. I was too tired anyway! Did get my hair washed and some lax stuff done, did not go to Buckley's with Bob and Breck and Janelle, but let them bring me home quesadillas instead. My hips hurt; I have some sciatica; I just want to stay in bed. A muscle relaxant helps.

Saturday, April 10
6 am. The Magster wakes me up to take her outside. Bob can't seem to wake up. Lax phone calls start at 7:15 am.
         It's a beautiful day, but cold - high only 59°, low 42°. Spent the entire day in bed. Bob left early to ref a game at Gettysburg, will be back late - in the meantime, one phone call after another, or so it feels. Boy do I hate phone calls.
         Debut of Titanic on HBO tonight - I've already got the video and seen it a lot, but somehow having it scheduled makes it more fun. Back on vitamin E. My neck at my voice box feels tight - used to feel that way when I first collapsed with this stupid disease, as if I had a collar on too tight. Front glands swollen again; back of neck hurts - that guy's been here with the baseball bat. Tired and sleepy.

Sunday, April 11
Pouring rain today. Miserable and cold. High 48°, low 43°. Woke up at 10 am, took pills, fell right back asleep. Woke up again at 11 am to go downstairs and help Bob with the lax schedule. But he stayed too long at the office, so I worked on webpages instead. At 3 pm ironed a shirt for Carolyn (couldn't do that before!) and then we drove an hour into the Pennsylvania suburbs for her interview with a group of alumni from Berkeley. Ate at Iron Hill in West Chester, got home at 6:30 and all I want to do now is sleep. Phone calls are kind of a bummer; the wedding plans seem to be falling apart again. Kids want to get married in Florida; her mom wants them to have the wedding in Baltimore where the whole family lives. Try to tell them it will turn out okay wherever they end up.

Monday, April 12 - 20th infusion
Now it's the Phillies' home opener (they always start the season on the road). We'll go to the Vet as soon as my infusion is over.
         Cool today - high only reached about 54°. Rain stopped earlier, so we will get some sun, but our seats are just under an overhang (convenient for rain, but not for a cool day like today). I have wanted so long to walk into the Vet. George and Alex, the gentlemen who take tickets at the lower gate that I've used for years, couldn't believe I was walking in without a cane or anything. They gave me a big friendly welcome the minute I stepped out of the car. My kind usher, Wydee, has watched me deteriorate over the years, and every year at the end of the season he holds my hand and tells me he will be praying for my health to return - I can't wait to see him! He's so excited to see me walk - gives me a big hug.
         Phillies lost 10-8, but we had a good time anyway. Worked on Bob's lax until midnight; went to bed at 1:30 am.

Tuesday, April 13
Woke up at 11 - Nancy was here to do the house; I don't feel well, so she lets me stay upstairs while she cleans downstairs. Took pills, had breakfast and coffee. Later got up, found printer won't work at all. Did some internet; backed up on messages again. Didn't go to bed until 12:30.

Wednesday, April 14
Up at 5 am with Bob before he flies to Miami - I wish I could go with him, but it would be too hard to work it around my second infusion this week. He won't be back until Saturday, sniff. Then went back to sleep, plan to spend rest of day in bed. I am tired from going to the game on Monday, and then spending so much time on Internet yesterday. I need to rest.
         I woke up again at 11:30, took some pills, brought coffee back upstairs. Gave Cat his medicine and put him outdoors. Went through USC admissions packet and called to make sure all i's are dotted and t's crossed. They are.
         Read the newspaper. Used to do that all the time.
         By 5 pm, I have what feels like a right-side migraine. Turn out the lights, lie down, listen to "Titanic" on TV. Come back and internet some in the evening. Once again get trapped by so many messages, don't get to bed until 1 am.


WEEK 11

Thursday, April 15 - 21st infusion
Stayed up too late last night - hard to get up this morning. Carolyn cut school and took me to my infusion since Bob is in Miami. I want to start driving! We went to the Pit for lunch, came home, and I went straight to bed. I thought Carolyn had silks until late, so I cleaned out the kitty litter (very hard), and carried it downstairs, ate dinner, felt good - then Carolyn comes home tired. She wants to collapse, but I can't help her. Bummer. I wish I was normal. More phone calls! One at 11, another at 11:30 pm. Difficult sleeping after the last one. Finally fall asleep around 1:30 am.

Friday, April 16
Awake at 11:30 am, Carolyn forgot to bring me water before she left, so I had to go downstairs. It was a struggle, but I let Maggie out and in, get water (and coffee while I'm at it), and get back to bed. I am sore all over. In fact, come to think of it, lately it seems to be pain that sometimes prevents my getting up and moving around. Mr. Arthur Itis, it feels like. This disease makes you feel so danged old.
         Dr. Ablashi called. My 37kDa from February came back - the count was down a bit. They say that's a sign that I was losing my window where Ampligen could have the most effect on me, so it was good I started it when I did. I'm not sure what it means.
         Saw "When a Man Loves a Woman" about an alcoholic and her husband, heart-breaking. Bob is in Miami, and I miss him. I am depressed; wallow a bit in self-pity over being so fat and awful looking with this disease. Why couldn't I at least look gaunt, if I'm going to be this sick? Then at least I could wear stylish clothes, I thought. I wish I could look pretty.

Saturday, April 17
Slept terribly last night with nightmares, but my head is in a much better place today, thank God. Up at 11 to wash hair, going to help Carolyn pick out a prom dress. Hard to pick one out; she's built just perfectly for these dresses and looks good in several. But she finally is happy with her decision. Had a good time at the mall with Carolyn, walked a bit and rolled wheelchair by myself a bit. Back in bed for a nap at 4 pm. Slept some.
         Went back downstairs around 8; Carolyn is planning a big dinner party. I helped her put a menu together, ran a load of dishes, cleaned out the refrigerator to give her space for the lasagna. We couldn't find the challah recipe, so I had to do it from memory and we mixed signals - so she had to redo it twice (once to get the yeast in, once to get the butter in) - but it turned out lovely.
         Bob's home.

Sunday, April 18
Took pills at 8:15, back to sleep, finally sitting up at 9:30. So far no repercussions from yesterday's excesses at the mall. Going to Baltimore today to meet Traci's family. I was proud that I could walk, but perhaps should have let them understand better how sick I still was. Hard for outsiders to understand. Very weird to be thinking about a real wedding and in-laws and everything. I feel like something out of "Father of the Bride."
         Lunch, then took Eric and Traci to airport, then home again by 5:15 to help Carolyn with her appetizers, tried to get printer to work again but it wouldn't. In bed at 8:20. Tired, but happy about getting to do stuff for Carolyn. Glad to see Eric and Traci. Clear but windy and cold - high 60, low 43.

Monday, April 19 - 22nd infusion
Awake at 10:30, up at 11:30 to go for infusion. Carolyn's diner party last night went very well. I helped (she let me) and I did something productive. That makes me feel good. Cloudy day, with showers on and off, high 57°.
         After my infusion, I help Bob a little on lacrosse, then sleep from 3-7, stayed in bed to 7:50, then downstairs to eat some of Carolyn's lasagna and do more lax. I want to be back in bed at a reasonable hour - let's see if I succeed. Ah, not so good, in bed at 1 am.

Tuesday, April 20
Several times tried to wake up, finally up at 10:30. Sleepy. Nancy was here to clean, but decided she had to straighten up the dining room, went through all of Bob's piles of tickets and things - oh, he will be upset when he comes home. How can I explain where it's okay to clean, and where she's got to just leave the mess where it is? But what can she do? There isn't a single room in the house that she could clean, and then turn around and say, now this room looks nice. Piles of stuff are everywhere - on the furniture, on top of the bookcases, on the floors. There's an six by ten foot area in the family room that looks like a storage room-boxes on top of boxes. The living room still has the Christmas garden in it - a train set on a large platform that is supposed to come down after New Year's. Best not to even discuss the dining room. I try to get her to clean around the mess - just try to get rid of the dust and the dirt, and particularly the grime in the kitchen and bathrooms. But it gets to her; she wants the house to look nice - it's not going to. Finished as much lax as I could, did some email - not sure when I fell asleep, just remember being very tired. I think I watched Nightline. 25 high school students were murdered in a Colorado suburban high school. I am frightened for Carolyn, for all young people. I have an irrational desire to keep Carolyn home from school tomorrow.

Wednesday, April 21
Get up at 12:30 with difficulty; put togeher packets for CFSCC meeting tomorrow - didn't eat or drink nearly enough today; had an NMH problem (low blood pressure at the wrong time).
         Had to go to UD tonight to print out stuff for tomorrow because the printer still isn't working. I can't do anything about it; I can't drive. In bed at 11:30. Muscles hurt. Didn't take any Ultram today, getting a "chinka chinka" sound in my. I recognize it because I went through it once before, a couple of years ago, when we tried to substitute Wellbutrin for Zoloft. The chinka chinka stuff plagued me for weeks, and the Wellbutrin just made me cranky, so I went back on Zoloft. A pharmacist explained that it is called seratonin withdrawal. I know that Ultram also works on seratonin, so going without Ultram had triggered it. Heaven knows what will happen if I try to go off Zoloft. But, I figure I'll worry about that some day when I'm well.


WEEK 12

Thursday, April 22 - 23rd infusion
Started out raining, became sunny. High 74°, low 46°. Took the 6:45 Metroliner to Washington, probably close to 80° there today. Used their wheelchair to get to the taxi stand, but from that point on, no wheelchair for me. No cane, either. Taxi left me off about a half-block from the entrance; I took a deep breath and walked the whole way without problems. The CFSCC meeting was ... weird. Everyone was stunned when I waltzed in like a normal person; conversation stopped. Dr. Levine was kind enough to ask me about it. Went through the cafeteria line like everybody else, and ended up walking all the way through Union Station! Mitch thought my cognitive improvement was more noticeable than the walking. Jill said that it shows there is hope. Yes, there is hope.
         Home around 8, Mickey D's for dinner, bed at 12:30 - couldn't stay away from internet or Nightline.

Friday, April 23
Had my infusion today because I missed it yesterday; went to Charcoal Pit, then plan to spend rest of day in bed. Thunderstorm came through around 4:30, pretty startling. Red newspapers in bed, slept all afternoon and evening, lights out at 11:30.

Saturday, April 24
It felt like 1,000 phone calls this morning. Started at 8:15, lasted to noon - everybody wanting to know whether this or that game is going to be played in the muck. Lounged zround with Carolyn to 2, then went downstairs and did stuff, some internet. Feel fine. Only one day recuperating from Washington - not bad. Carolyn made a good, healthy dinner tonight. In bed at midnight. Temperature is falling; low down to 42°

Sunday, April 25
Woke up around 10:30 - watched a movie, had breakfast upstairs - the family is home today so I can avoid the stairs. Feel pretty good, but very sleepy. Decide to stay upstairs all day and read newspapers and snooze.
         Stupid political conference call got me out of bed and downstairs. Not a happy camper. Conference call didn't make after all, somebody is sick. Go back to bed at 6 pm. High today 61°, low down to 37°. I remember when I used to be thinking about planting things about this time of year. I miss that. Miss my flower garden more than my vegetable garden, but miss both.

Monday, April 26 - 24th infusion
Bob woke me up at 9:30 am to get ready to go for my infusion. Too early to get up. Afterwards, went to the Pit. Came home and slept. Slept hard, from about 2:30 to 6 pm - except, of course, for the phone calls. Went to the Flyers game - used the wheelchair because I don't feel so good. I had a good time, but I want to sell our tickets for Wednesday; I don't think I can do this again so soon. Besides, the Flyers are playing like .... I feel. In bed at midnight.

Tuesday, April 27
Up at 10:30 for Nancy, but so sleepy. Got a lot of internetting done, major politics. More conference calls. Hate them, but can't quite let go; fear what will happen to Ampligen if it gets turned into yet another CFS political football.
         Nancy did the bed - feels good to have clean sheets! There's something she can do! Can't remember the last time I had clean sheets. Lights out at midnight.

Wednesday, April 28
Awake at 10:30, coffee, meds. Trying to be awake for a scheduled conference call - which ends up not happening. More political bs on internet. Ugh. Why can't I just be sick and be trying to get well? These people are trying to take away the one thing that is making me better. I hate them. I hate the FDA. Why are they making my life so hard? Ah me. I guess that's just another variant of "why me?" - a bad question to ask. I should feel fortunate. At least I can get the drug. I wish I could just tell them all to go away and leave me alone. Can't. Fear what they might do. Fear they will succeed. Take this away from me.
         I sense I should not be thinking about this stuff; worrying about whether I will lose my hope. Not healthy. Stress and worrying are not healthy. Fear is definitely not healthy. But what is there to do? They invade my space, the peace of my recuperation, with threats and politics.


WEEK 13

Thursday, April 29 - 25th infusion
Had a lot of trouble getting up this morning for my infusion. Went to the Charcoal Pit again - enjoy my lunches with Bob twice a week after infusions; it's nice to spend time with him again. Came home and worked on the USC orientation information. It got very stressful, but I did not fall apart. Proud of myself for handling it.
         Lots of phone calls, but everything turned out okay. Then I was tired, and I couldn't see how I could possibly go to the Orioles, but Bob came home and persuaded me to take a bath, and we went. I had a ball (even though they lost) - laughed with Shakey doing his thing with the lemonade; walked, really walked, almost at Bob's pace. Wonderful to see Don and Linda again, the warm couple with the seats next to mine at Camden Yards. They were happy to see me walking. This is the fun part. Seeing people happy, instead of the worried faces as each year I showed up worse than the year before. Back to the car.
         The drive home was very difficult - my knees and legs hurt. But I was okay when I got home and got some Ultram in me; finished Carolyn's forms for orientation and wrote the check. I feel good about life. In bed about midnight.

Friday, April 30
Took my pills at 10:30, was going back to sleep but Mitch woke me up. 11:45, lying down again. Came down around 2, had coffee, did internet. Conference call got off the ground this time. Nothing much happens. Lovely day, high 68°.

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Go on to Part 2: May-August, 1999