Ampligen Diaries
by Mary Schweitzer
Copyright © Mary Schweitzer 1999

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May

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August

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MAY

Saturday, May 1
Got up around noon - again, had trouble waking up. Did internet, some website work - the printer is still not working, so I'm stuck for my presentation tomorrow. Sigh.
         Left for Phillies game at 5:30. It was boring, home by 9:30. Beautiful day, though. High 67°.
         Stayed up to 11:30 preparing for tomorrow - without a printer, I'll have to get up early so we can go by Bob's office and print things out there.
         That's okay. I feel life is good.

Sunday, May 2
Had to get up at 5:15 am to go give a talk in Virginia to the state NOW organization - tag team with my brilliant and compassionate ME/CFS specialist, Marsha Wallace. An honor to get to speak with her. Marsha is lively and charismatic, puts on a good show. I think we make a good combination.
         Everything goes well - get the handouts copied, make it down to Alexandria without any traffic problems - early on a Sunday morning, you can just fly down there in a little less than two hours. And a beautiful day, sunny with a high in the 70s.
         I think my talk went well, if only about 25 people showed up for it. It was wonderful seeing Marsha, and again the fun of somebody delighted to see me walking. Ended up having to walk the equivalent of three city blocks from the lobby to the conference building and back. Walking feels so good, physically. Like flying.
         But it took its toll. Bob had to stop at Camden Yards on the way home to exchange tickets for the Cuba game tomorrow, and waiting in the car was absolute hell. I was in and out of consciousness - the worst feeling in the world. Five minutes can feel like two hours when you drift out and in, out and in.
         Supposed to go to the Flyers' playoffs tonight; don't know how I'm going to do it. My muscles ache, my eyes hurt. (Call that feeling in my eyes the pliers one - somebody is trying to unscrew my eyeballs with a pair of pliers. An old friend during four and a half years with ME/CFS). Somehow made it through the game. Heartbreaker.

Monday, May 3 - 26th infusion
Up at 10:30 to get infusion, then rested a couple of hours. Going to Baltimore for the Orioles-Cuba game - looking forward to the game, looking forward to seeing it with Breck. I had to use the wheelchair because we couldn't get a parking spot close to the stadium - most handicapped parking at Baltimore is way out on the other side of the freeway entrance, and they don't run a bus or anything. Theoretically you can be dropped off at the front, but that requires a series of right turns through traffic and crowds and traffic cops and stoplights - by the time Bob would drop me off and return to the handicapped lot, it would be full. So this is about the only choice; I have to try to hobble in from the lot, and I can't. I'm not the only one. Sad to see people like myself hobbling slowly with a cane toward the entrance. And pass all those media trucks and high roller parking on the way ...
         It was very exciting when we came in. Bob bought a bunch of souvies, then took them back to the car, so I sat in the wheelchair on the Eutaw Street portion of the stadium, just watching people come and go. Sound of Spanish in the air. But the promise of the day was not fulfilled; it started to rain early on, and we eventually had to leave before the game had a chance to really get going. Ugly day - low 52°, high 55°.

Tuesday, May 4
Slept to 10:30, not very well (what a surprise). Nancy came, was understanding. I sat in the lounge chair and spaced out, sometimes did internet. Wild day on internet over whether the Journal of Chronic Fatigue Syndrome was going to change its name to the Journal of Myalgic Encephalomyelitis. I was very hopeful that it would. But, after some rapid exchanges back and forth, the word came that it would not. You have to say one thing about internet - rumors do fly fast, but if you are determined to squelch one, it can be squelched just as fast as it can be spread.
         Went back to bed around 4, came downstairs at 7:30 to help Bob with lax. In bed again at 11:30.
         Had a mildly spicy dinner - gave me the, uh, runs.

Wednesday, May 5
Big day today! I'm driving myself to get my hair done! First time I've driven in a very long time. For years I couldn't make my own appointments, because I can't drive. And it was nagging all the time - Bob, please make an appointment for me; please make an appointment for me. So it just didn't get done.
         I didn't drive after finishing out the fall semester, 1994. Then I got better in the fall of 1995, and did a bit of driving to stores and things - but I really wasn't well, and it was difficult; finally one day I found myself on a curb in front of the post office with no idea how I got there, and decided no driving until I was through with brainfog. My kids were very serious about this - Lord bless them - at their age, the proscription against driving in a state of altered cognition is serious; Eric, my eldest, lost a very close friend to a drunken driver at the age of 16 and he was aghast at the idea of me getting behind a wheel at all. But I do appear to be so much better, particularly my brain.
         I was a little nervous at first, a little slow on the clutch - but I did it! Went to Eileen's, had my hair done, then went to the Acme and got some stuff we needed, plus dinner fixings - fresh boned chicken breasts, Green Giant teriyaki mix, fresh fruit, and fresh corn on the cob. Home at 4.
         When I got home, Carolyn was waiting for me with her hands on her hips - "Does Dad know you were driving?" Well, going to the Acme was a bit further than I was supposed to, but yes, he knew I drove myself to my hairdressers. And it went fine! How about that.
         It's hard to explain, but the last semester that I drove to Villanova, driving was a high-anxiety experience. I lost my sense of space. I knew, technically, that I was in the right place in the road because I could see the right markers - but inside, I felt I could be anywhere. I could see, intellectually, that the other cars were in their own lane - but inside, I felt they were coming right at me. If I tried to change lanes, I would turn around to see if a car was there, and I had to turn my whole body because turning my neck hurt badly (still does). So it wasn't easy. Then when I looked straight ahead again, I couldn't remember - was something there? Or not? So I would have to repeat it. Finally I'd just do it - and sometimes there would be a honk and a swerve, but most of the time my guardian angel must have been watching out for me, because I made it into the other lane. The best strategy was to try to gauge when traffic was low and get in whatever lane I had to be in at the end of the trip. I would forget where I was going, forget the exit, make the wrong turn - drive round and round making up for mistakes - the whole experience was drenched with anxiety.
         But today, it was fun, like driving used to be. No problem at all. No anxiety. No fears over where I was in space. No fears that cars were in my lane. No trouble making turns, or checking the rear-view mirror. It was ... normal. Relaxing. Fun.
         Typical - having succeeded driving and getting my hair done, I went and did too much: I changed a lightbulb (yes, that's a big deal because it requires holding my arms over my head); made dinner for myself and cleaned up. I enjoyed my little dinner. But then pushed it one thing too many -- emptied the kitty litter because nobody had done it in a while, and it's too heavy, and I know it, but I did it anyway.
         Have a terrible headache this evening from what is probably sinuses - sent Bob out for Vancenase, which I have been out of for weeks and therefore not been using. Bob and Carolyn are aghast at all I did today and order me to rest. I don't protest. In bed at 7 pm.


WEEK 14

Thursday, May 6 - 27th infusion
Had trouble waking up today. Took my pills at 10:20, but fell right back asleep. Somehow managed to get out of bed at 11:20 when Bob walked in. Didn't get to Dr. B's until noon. Maureen is always understanding. Afterwards, we went to the Pit, and then to the Oriole's for a 3 pm game - they beat the Chicago White Sox 4-2. Overcast, with showers and sprinkles, but the game took place anyway. Nice to be able to see the whole game and not have to leave early. Came home, couldn't stay away from internet. Went to bed at midnight.

Friday, May 7
Kept trying to wake up this morning, and kept falling back asleep. Woke up for good at 1:30 but didn't feel much like getting out of bed, so I stayed in bed and watched a movie to 2:30, half-dozing. A phone call got me up. Took a bath and washed my hair, went on internet. Remembered at the last minute to order the speaker system for Sunday and price balloons. Wish I had somebody in the Washington area to get balloons, but I'm going to be lucky if anybody shows up this year, let alone with an assignment.
         Went out to dinner with the Gang for the first time - Breck and Janelle, Andy and Sandy - Bob often went out with them in the evening and brought me back something to eat. But it didn't work out so well. First we tried the Brewery on Main Street in Newark, but we had to wait, and they don't have any place to sit and wait that's not surrounded by smokers. I still can't be around smokers; gives me a headache and a cough and makes me nauseous. I said I would just sit out back and watch the evening - meant it too, but Bob got protective and said we had to leave. I was embarrassed, because they wanted to stay but they were good sports and left. Then we went to the Crab Trap, had an awful meal. Wished I had stayed home and had leftovers or a doggie bag. Not ready for prime time, I guess. In bed at midnight.

Saturday, May 8
Wanted to sleep, but had to deal with problems with the amplifier. Hope Bob doesn't get too grumpy about this because it is a serious hassle. Bob was going to pick the amp up, but it turned out that it didn't have batteries (when they had specifically promised me one with batteries - but this was somebody else now at the store and didn't remember the phone call). They call it a caddie or something, an amplifier system on wheels a built-in car battery. Last year Doc Judy donated a bullhorn, but it wasn't comfortable trying to speak into it; want an amp system like we had the year before. Again, the system isn't the problem, and it doesn't cost all that much - the problem is logistics. Still dependent on others for transportation.
         Left with Bob around 4:30 pm - got the amp and a mike at an amusingly mixed up music store in Newark. An older gentleman was waiting for a guitar amp for a gospel show that night; I felt deferential because he was clearly a professional musician. Reminded me of the old days, when I lived in San Francisco, and my best friend's husband played bass with Butterfield Blues. So long ago.
         We ate at Salsa's (which we should have done last night - good food, reasonable prices, no wait because it's located in a really difficult place to find). Aren't you going to place an extra take-out order? the waitress asked Bob. Bob pointed to me - "No - she's finally able to come out and eat it here!" Well, Congratulations! Said the waitress, meaning it and beaming at me. Suddenly I don't care how old I feel; I feel happy that I can be out in the real world again.
         We went back to Bob's office and copied the pamphlets for tomorrow (yes, my printer is still down) - bought some name tags and tape at Staples - then searched and searched for balloons, but we were too late: all the party stores were closed. Finally ended up at the Acme near home, where we could have started out in the first place. Yes, they can make a bouquet of blue and white balloons for us in the morning. I feel relieved - because I had told everyone to meet at the blue and white balloons!
         Lovely day with a high of 80° -- hope tomorrow is good. Last year was an unmitigated disaster in the pouring rain. Live and learn. This time I have a rain date scheduled, but I am hoping not to have to use it. I've faxed tons of press releases to Washington-area media; maybe this time somebody will wander by to look at our little rally.
         Home at 9, folded pamphlets and finished correspondence - got remembrance items and posters together from previous rallies; didn't even open the stuff that had floated in through the last month. In bed finally at 12:40 with the alarm set for 6:30.

Sunday, May 9
Today's the "May 12th" rally. No, it's not May 12th - but the CFIDS Association has planned Lobby Days this year for the 12th, so I don't want to conflict with that. Several people had said last year that they would have rather the rally been on a Sunday, but when I picked the date my head was not thinking clearly because today is also Mother's Day.
         Should be a beautiful day. Get my hair washed, have to iron a blouse to get dressed, need to pack the car - don't get gone until 8 am. The weather looks good; partly cloudy, calling for a high of 79° in Washington. Unfortunately, it appears it will be windy.
         We got to the Acme, but it took forever for them to find somebody to blow up the balloons, and I kept watching my clock anxiously. Finally I gave up and said OK with only 6 blue and white balloons blown up.
         When Bob and I got to the Capitol Building in Washington, a small group had already planted itself in the wrong spot. Turns out that I had permission for the opposite side from last year - last year it was at the House of Representatives site; this year it is at the Senate site. The small group is positioned nowhere near either site, but at a street corner - in retrospect, probably a better place than where we did end up. Bob honks the horn as we turn the corner, and they see us.
         The Capitol Police will not let us set up anywhere near the Capitol Building. We are ordered to set up shop a good 30 feet away from the chain link fence that serves as the boundary between the walkways and the large grassy area - where nobody can see what our signs say, or what we are doing, and it is virtually impossible to hand out pamphlets. I sent two young girls whose father has ME/CFS over to start handing out pamphlets, and they are soon chased away by the cops. Later an older woman, whose grown daughter has the disease, is successful and slipping in and out of the crowds and handing out pamphlets without the police catching her; she is very pleased with herself (and all of us with her!).
         The wind is blowing so hard the posters won't stay up no matter what we do. We try to tie them to a tree, but the police show up and say no dice. We try to tie them to folding chairs, but the folding chairs fold up in the wind and take the posters with them. Finally we sit some people down and make a link of posters behind them, with the people themselves keeping the posters up. It doesn't look very attractive, but at least some are up. Most of the posters never make it up at all. I am very frustrated.
         A group arrives from an online organization to set up a big contraption with a "banner" - squares of cloth with people's names on them sort of like the AIDS quilt, sewn together in long strips that they plan to tie to PCB pipes that Tom Hennessy has bought. Tom showed up long enough to drop them out, but he has pushed himself too far again and has to go home and lie down. I am frustrated for him, and frustrated for myself because he's a good speaker. It takes pretty much the entire afternoon to get the "banner" up, but once it is up it is pretty, and a bunch of Japanese tourists clamber over the chain link to come out to look at it close up; it really does look like a Japanese protest flag. They don't know quite what to make of the SuperDoc emblem for Judy. I feel a twinge of guilt - I had promised Judy I would hand out material for her, and I it had been one of the things that I had spent all night copying - but I was never able to get anything handed out. Wish she was here too, but she's embroiled with a losing lawsuit against her insurance company that has arbitrarily refused to cover her (so what else is new?). As an M.D., she is more frustrated than anybody else that the insurance company refuses to believe her diagnosis and situation. Another one like Tom who I worry about; she is pressing, and she will suffer the consequences soon enough with a bad crash and a lot of pain.
         I find that I am thinking more about people who aren't here than those who are. Shake myself out of it. Meet interesting new people, some I "knew" on internet. Find myself distressed at the state of Peter's physical health, but try to cover it up and not look as alarmed as I feel. A family has brought their father, a charming man, whose life seems to be draining out of him. Two women, one with Multiple Sclerosis and the other with CFS/M.E., somehow manage to stay cheerful through all of this, and I am grateful for them. Then Emilie shows up, a high school student with an unbreakable spirit who has been sick with this disease as long as I have. Emilie was doing better last year, but then this fall her high school in Annandale refused to let her out of gym class despite her doctor's requests; the result was that she deteriorated into a wheelchair and she is in one today. She could have accepted home schooling and would probably have been better off physically today, but she wants so badly to be in high school with her friends.
         Emilie has written a play about the disease, and her friends have come to perform it. It is the highlight of the day.
         I realize that I am not where they are any more. With the RnaseL and HHV-6 tests, and Ampligen starting to have an effect, I feel my mystery is pretty much solved. Theirs goes on and on. I remember that Tom had thought he had found a cure last fall when I had seen him at the CFSCC - now he was sicker than ever, and in such terrible pain. Ampligen won't help all of them, but I know it would help some - if they could afford it, if they could get into a study, if if if if. I feel guilty that I am getting well, and they are not.
         I can't say the rally was a failure - how can I say that the playlet was a failure, or the lovely people who did show up? But, I'm not sure we didn't do better last year in the rain. I had ended up walking a lot and carrying things, because there was no one else to do it. Adrenaline kept me going anyway. Bob was an unhappy camper about the whole thing; thought it was useless, and I have to wonder myself. None of my speakers showed up; mostly because of Mother's Day; partly because they don't think they can be there today and also do Lobby Days later in the week. I tell them I understand, but I am disappointed. I ended up handing the microphone to folks and saying - here, tell Washington what you want them to know. This is my third rally, and we still don't have any local support for it. I don't think there will be another one. I did my duty to Joan Irvine, whose suicide note in September 1996 asked for a rally at the Capitol Building the next May 12th. We had one; we had three. Enough is enough. Bob says I need to separate myself from this damn disease name that gets no respect - tell people I have a hereditary defect in my immune system (which, with the RnaseL abnormality, is accurate enough) and move on. But I can't. I know that for me, and for a good number of the people there, this immune defect may cut to the essence of what ME/CFS is. It is the same thing. How can I desert them because I have been fortunate enough to get tested, to get medicine, when they can't? Yet, how can I go through this again. Bob counsels me to find other ways.
         In retrospect, it might have been better to have had the rally on Lobby Day, and PWC's could have come and gone in between appointments with Congressmen. I don't know. I am discouraged.

Monday, May 10
Very hard to wake up for infusion. What else is new? Not in such bad shape as I expected, though. Last year I spent the day after the rally sleeping on a homemade bed at the back of the room where the CFIDS Association was holding their mandatory Lobby Days seminar, half-sleeping, half in a coma. Wouldn't have eaten if Mitch hadn't gone out and gotten something and then made me eat it. The year before I was so dehydrated from the rally that I was physically sick all night and well into the next day. Today, it was just a mild crash, nothing serious.
         I'm a bit sunburned and dehydrated, so I force fluids.
         Not looking forward to having to go back to Washington tomorrow, but a commitment is a commitment. Besides, I plan to meet Bob Patton for the first time; his wife Anita is on Ampligen, and both of them have been immensely helpful to me.
         I had been trying to go off zoloft (after all, I'm not really depressed about my life any more) - but I can't. Seratonin withdrawal is awful. Little electric zingers going off in my brain - zzzzzt, zzzzzt - chinga chinga - Bob has to go get some from an all-night pharmacy.

Tuesday, May 11
Helluva birthday. I am 49. I want to spend it at home, but ... committed to going to Washington.
         Caught the 8:36 am metroliner, ran into Senator Roth on the platform. Told him I'd be coming to see him tomorrow, left some pamphlets with his aide. Expressed my gratitude for the help I got from his office in trying to break through the Ampligen impasse. He was interested, and we talked about it a bit. Later I would see the CFIDS Association's lobbyist and tell him about the encounter - he said that Roth would be helpful one day if we ever needed a drug approved by the FDA. I said .. hello? What about Ampligen? Tom said - oh, that's not a real drug; it doesn't do anything. Tom, I said, do you remember what I looked like last year? He did. What do you think has made the difference? He didn't know. I told him I had been on Ampligen now for a little over three months. He blushed, and made a quick exit. I hate CFS politics.
         I must have been tired, or maybe I was just in a bad mood from my encounter with Tom, but I was hell on wheels at the meeting today. Didn't help that when I first came in, I had to use the restroom - there was only one, and it was off of the meeting room, and the stall was about six inches off the ground - I tripped coming out of it and sprained my ankle painfully, ripped my stockings. Great way to start. The rest of the day went about the same.
         A newbie lobbyist was put in charge of our group; she appeared very nice but hadn't a clue as to what this was all about. They had put a terribly outdated article in the packet to hand out to Congressmen - it had the old prevalency rates in it (6-8 per 1,000; rather than the current prevalency rates from the CDC of over 400 per 1,000). Dr. Reeves of the CDC had announced the new rates publicly (they had been a secret for a year while he waited to get an article on them publisehd) in October at a press conference - and Tom didn't know about it. A fellow Delawarean, Richard, whose lovely daughter Allison is trapped with the disease, had a xerox of Reeves' announcement from October and gave it to Tom - we asked him to copy it and substitute it for the awful article. Got terrible feedback. At first they didn't want to talk about it at all - so I finally stood up and made people look at what was in the article, and that took care of that. They were angry with me. Which made me even more disgusted with the whole endeavor. The point is information - if you have accidentally included outdated information, why get high and mighty about it?
         By this time I was in a pretty foul mood. I had expected to meet with Ampligen folks today, and except for Bob Patton, never met with anybody. Why did I bother to show up, I asked myself.
         "They never read what's in these packets," I was finally told. But this time they just might, I responded - after all, the Investigator General's report on Reeves' accusation of CDC misspending was due out soon, and then they would turn to the only information at their elbow, which would be our packet. I insisted that we had to be very careful what we gave people. I asked for a vote (at the quiet suggestion of a CFIDS board member) and was told it wasn't a voting matter, but that the different lobbying groups could choose for themselves what to do. Fortunately, as I learned later, everybody pitched the offending article. The episode was upsetting, however - I left the room and went for a walk, went to a Walgreen's about three blocks away to get a replacement for my stockings; it felt good to walk on such a lovely day, and cheered me up.
         I left early for the train, but missed the 5:35 local, which turned out to be an awful mistake. The 6:35 local was delayed - I should know better than to plan to catch a train coming up from the South, because they seem to always be delayed. I just sat there, a big black cloud hanging over my very frustrated self, having a bit of a pity party over my lousy 49th birthday.
         Then ... I started to write. I began describing everyone in the station, and soon we were talking to each other, and I confessed it was my birthday, and everybody wished me a happy birthday (in fact, the happy birthday's went on all night), and it turned into sort of a casual party. I was sitting next to an Irishman who wondered why we "put up with this;" heard some great stories from a long-time railroad man to my left; listened to a honeymooning couple talk about their trip so far; watched a very tired Iranian mother in full religious regalia try to deal with a screaming baby; chatted with college students about their courses; and had a long conversation with a Chinese-American scientist about the discovery of the defective RnaseL and what it might mean; he was on his way up to Columbia University for a job interview, and I wished him luck.
         The train pulled into the Wilmington station at 11 pm. Bob met me with a cake. Happy birthday after all.

Wednesday, May 12
Oh, I did not want to go back to Washington today, but as Bob said, I had made it this far, might as well finish it out. So I did.
         It was a lovely day, with a high of 81°. We had six appointments - 3 in Maryland and 3 in Delaware. I had a ball walking all over the place; looked like an 80's yuppie with my walking shoes on as I crossed the Hill back and forth with my heels in my briefcase. But I blew it - Kim Kenny came along and suggested we all walk through the tunnel under the Capitol Building, but another PWC and I wanted to see the flowers and walked outdoors instead - we missed running into Joe Biden, who had a fresh-off-the-presses copy of the Investigator General's report on the CDC! We knew it might come out today - Kim had been a bundle of nerves - but it was a surprise nevertheless. More of a surprise: the IG found the CDC guilty! 12 million dollars allocated for CFS had been spent on unrelated diseases instead, and then Mahy had publicly lied about it to Congress and, worst of all, in his role as chair of the CFSCC (the Chronic Fatigue Syndrome Coordinating Committee of Health and Human Services - the meeting I went to back in April).
         Don't know what was accomplished, but I was glad I went, and even more glad to be home at 5:35.


WEEK 15

Thursday, May 13 - 29th infusion
Legs ached, feet felt like I had run on gravel - but I was basically okay. After my infusion, I spent way too much time on internet. Didn't go to bed until 2:15 am.

Friday, May 14
Payback time! Had the squirts, stayed in bed until 4, came downstairs to tape a movie. My legs are very sore. The guy who goes after my eyes with pliers has switched to hot pokers today. Didn't feel so bad in bed, but every time I tried to get up and move around I was very sorry. In bed for good at 11 pm.
         Up at 12:12 in the morning with my gut screaming. Couldn't sit still, legs jumping around, cold and hot at the same time. Jumpy and exhausted. I know this feeling from previous ME/CFS crashes; it's awful. Just can't describe how it feels, like electrical wires up and down my arms and legs, zinging muscles alternately like a row of blinking Christmas lights. Took some more pills, more Klonopin, more Doxepin, anything to stop this feeling. I think I ended up with double my usual Klonopin dose of 1 mg; treble my Doxepin dose of 30 mg. Felt like I took more, but a count the next morning confirmed it wasn't all that bad.

Saturday, May 15
My gut is fine today, but I am totally messed up from all the pills I took last night. Boy was it hard to wake up. I don't think I was fully awake until 4 pm.
         Have to take a bath and wash my hair - going to the Phillies tonight. How am I going to do that?
         Turned out not so bad. The wind got kind of nippy; a high of 71° in the day turned into a low of 49°, a bit chilly for the Vet. But I had a good time, went to bed in a good mood. I think payback is over for now.

Sunday, May 16
A lovely day. High 70°. Got up at 10:30 am, determined to drive myself to mass - who knows when I went last.
         Wrote a bit for myself, checked internet, went to bed at 4:45 pm and slept until 8, when Bob brought in a good dinner. Deliberately stayed in bed upstairs so I wouldn't be tempted by internet.
         My left foot really hurts - I wonder if I did more than sprain it when I fell in that bathroom in Washington. What a choice of a place for people who are somewhat crippled. I wonder how many others fell in that bathroom.
         Back to brushing and flossing my teeth again - had gotten to the point last year when my dentist had asked my family to do it for me, but they wouldn't. My gp then ordered a nursing service out to see me, but most of what they wanted to do they couldn't because there was so much family stuff in the way. Still, they had gotten me a shower chair and handrails for the toilets, which helped a lot. For a while they had come and washed my hair. Nobody would do my teeth. In one year they deteriorated so bad - especially with the low levels of saliva that go with this disease - I now have calcium deposits on them. Made myself start brushing and flossing at night again; have to make it a routine again.
         Spent two more hours writing for myself, by hand, upstairs. Lights out at 11:30 pm.

Monday, May 17 - 30th infusion
Today is a big day - I will drive myself the 25 minutes to my infusion. Bob is going with me in case I have trouble, but neither of us expects me to. I feel bittersweet about this - the freedom will be wonderful, but I will miss my drives and lunches with Bob twice a week. It's been a treat.
         Everything went find, even stopped off for one more lunch together at the Charcoal Pit. Then did some internet and rested. In bed at 11:30 pm. No repercussions from driving.
         Try to go off zoloft again - start by cutting the dose in half.

Tuesday, May 18
Smells like rain today; overcast. High 75°.
         I took the shower bench out of the bathroom, and put away the rails at the toilet seats. Don't need them any more. But I still don't feel comfortable standing for showers; it's just that now I can sit and use a hand-held shower head in the bath.
         Got up at 10:30, did some laundry, washed some pots, but went up and downstairs too much too quickly. Then laid down on the lounge chair and Internetted, watched TV; more ugly CFS politics mar my visit to internet. Ugh.
         By 6 I have a bad headache and my eyes are getting unscrewed again; try to go upstairs to sleep but can't. Come back downstairs to watch TV; eyes hurt too badly to use computer. Eventually make it to bed, but not a pleasant night.

Wednesday, May 19
Poured all day - low 62°, high 66°. Ucky.
         Nothing much happened today. Got up at noon. Went on Internet. Did a load of laundry, but that meant having to go up and downstairs again, because both the washer and the dryer were full, and full with very heavy loads.
         Stayed on internet too long, eyes were hurting again. Went back to bed. Pooey day.


WEEK 16

Thursday, May 20 - 31st infusion
Have to get up at 8:30 so I can leave the house at 10 am - big day today; after my infusion, drove from Concord, PA, down to the Christiana exit at I-95, where I parked at Borders to meet a carload coming down from New York to go to Washington today for some informal lobbying. Very excited; it's a Grand Adventure. Enjoyed myself immensely, felt things went well. New friends, I thought. Ate in Baltimore, then drove home from Borders after dark - how about that! I thought. Felt very ... normal.
         But, got the zinging stuff going in my head again. Have to go back to normal dose of zoloft.

Friday, May 21
Woke up around 11 am. Really wanted to sleep more, but I'm wide awake. Now that's an interesting feeling. Did some internet and watched tv, thought I should take a nap but never got around to it.
         Tonight is the Senior Prom - Carolyn looked so beautiful. It's a gorgeous day, high 80°, couldn't be better for Prom night. The limo was late, though, so we never did get pictures; they went over to meet at Seth's instead.
         Then I had to get ready myself for a restaurant dinner at Tuscana's for Rudy's retirement. It's been a long time since I've been there. Had a great time - sat between Ken and Don while Bob alternated tables, glotching as usual. Got the usual ooh's and aah's over being able to walk and talk like a pretty normal person - six months ago I would have had to skip this dinner. It was nice, but I don't know how to talk to normal people any more. My whole life has been CFS/M.E. for so long.
         Got home at 10:30, very wide awake, watched TV. In bed around 1:30 am.

Saturday, May 22
Had trouble sleeping last night, don't know why. Woke up again at 11:30, wanted to sleep more but couldn't. Hung around in bed to about 2:30 when Bob came home, got dressed and came downstairs for internet ant TV. Got to bed around 1:30 am.

Sunday, May 23
Bob is off to Louisiana State for a week to teach at the Banking School of the South - I hate it when he's gone like that, but he's got to earn those $$$s for this Ampligen. Got up early to see him off and let the dog out - in the pouring rain, which meant I had to stand on the porch to make sure she went on the wet grass.
         Back to sleep (except for two phone calls for youth lacrosse); slept pretty much to 11:30, stayed in bed sleeping and resting until 2:30. Got dressed, drove to drug store in a drizzle to get my Rx filled. Carolyn made dinner - and I cleaned up! (Lots and lots of pots and pans) - and took the garbage out too. And did a load of laundry. In bed at midnight.

Monday, May 24 - 32nd infusion
Poured this morning, major thunderstorms. Three sets of storms blew through -- trees down everywhere, quite a mess. Got up at 8:30, went to infusion at 11. Afterwards, went to Eagle Run Shopping Center and bought two blouses at Banana Republic, though still too big for regular women's clothes. Drove down 202 to Concord Mall and bought two more blouses at Straubridge's. Freedom! Then had eggs at Howard Johnson's, and drove home. Rested, then picked up sandwiches at Caprioti's at Lantana Square, changed, drove Carolyn to the honors assembly at A.I. She got an aware for straight A's in 6 classes (later when she made up an assignment missed when she was ill, it turned out she had A's in 7 classes) - and they gave her an award for best student in statistics, one of two math awards given out. Then we drove home. Eyes hurt from the assembly, but feel fine. So happy I was able to see that. In bed at 11, lights out 11:30.

Tuesday, May 25
Drove to Philadelphia, Independence Mall area, for a two-day meeting. Negotiated tourists and tourist buses and tourists in carriage rides (mostly schoolchildren) on narrow crowded streets, some with cobblestones, to make it to the Holiday Inn at 4th and Arch. I used to go up there all the time to do research; nervous that it would be difficult, but it was easy - as if I had last been up yesterday. Felt a pain when I drove past the Philosophical Society, saw a bunch of suits outside, wondered if I knew any of them, wondered if I would ever go back to my career as a historian.
         We had a long meeting, 2:30-10:30. There was an earlier meeting, but they slammed the door in my face; Sara's too. These people were there to talk about Ampligen, refuse to let some of us Ampligen patients in. Who do they think they are? Politicos, that's who. I wish they would go away. They won't. Hard to maintain composure, but I did. By the end of the meeting, some of us beginning to come together; maybe this will work out okay after all.
         Lights out at 11:30; much to hope for.

Wednesday, May 26
Woke up at 9:30 am from a dead sleep - went downstairs and had breakfast, then meeting was to start at 10:30, but it was delayed, so I went upstairs and packed up. The meeting lasted until 3 pm - very hopeful, exciting, but I had my doubts - the ones who keep inserting themselves into our lives had mostly left, or hadn't shown up in the first place. I knew they would start up with it all again soon enough. Maybe we could hang together through it, maybe not. Just wait and see.
         Talked with folks and didn't actually leave until 3:30 - home by 4:30, not difficult at all. How many years I commuted from Philadelphia, I thought, driving home along a familiar route. Strange. Who am I? Why am I going to a meeting about Ampligen? I want to go to meetings on history. I want to go back to my life. But I don't want to lose this; I don't want to go back to how it was in January, with no hope. So I guess I have to do this stupid political stuff. Don't want to. But would I be welcome back in history? Have I been gone too long? Old news? Oh my, what do I want to be when I grow up, eh? This was not the way I had planned it!
         Carolyn seems to have a sinus infection and feels awful - I'm well enough to be able to help, instead of immediately crashing in bed. That's nice. It was so hard not to be able to help.


WEEK 17

Thursday, May 27 - 33rd infusion
Once again awakened early with lacrosse crap (and I thought the @#$%! season was over) - there seems to be a crisis of some sort, and Bob's in New Orleans. After taking one set of pills to wake up at 9:30, falling asleep again, and taking another set at 10, I'm finally coherent enough by 10:44 to go downstairs and call other lax people and ask them to handle the situation. I'm very sore - not just my muscles, but the back of my neck hurts - a sign, I always believe, that the part of my disease that is meningitis or encephalitis is active. But brain functioning quite well anyway.
         Drive myself to my infusion, even managing a cell phone call while driving (!), then picked up lunch at the Perfect Cup on the way home. After I ate the sandwich, however, I had to come upstairs and collapse. Fell asleep, woke up long enough to order pizza, made myself go downstairs to eat it and get some things done on internet. Couldn't bring myself to go back to bed until Bob came home from the airport; his plane was delayed, made it into BWI at 11:40 - he walked in the door at 1:20 am. Nothing to worry about any more. I can relax. Off to bed. Lights out at 2.

Friday, May 28
Sort of wake up at 10:30, trying to stay in bed today, think I need rest - the sore neck alarms me. Went downstairs about noon, had coffee, Internetted, did two loads of laundry. Beautiful day, high 83°. Went to Phillies tonight, feel tired and CFS-y. Need to rest.
         Back hurts - there's a spot at the right of my spine, about one inch below the waist, I think it's a pulled muscle that's hitting a fibromyalgia pressure point, because boy does it hurt. Lights out at 1 am.

Saturday, May 29
Woken up at 10 am by phone calls, then cat had to go out and was hungry, then Maggie had to go out - so it's 10:45 and I'm back in bed but wide awake. Oh well. I think I really need to rest. Fortunately, my back feels fine.
         Went back to sleep, dozed on and off to 1:30 pm. I think I could fall over and sleep some more, but I should get up.
         Got dressed, went downstairs. Beautiful day but hot - high 87°. Wanted to sit outside for a while, but nothing to sit on. Did a little Internet, mostly tired. Then went out to get Chinese take-out for dinner. Came home, tired, watched TV. In bed around 10 pm.

Sunday, May 30
Took dog out at 7 am, took pills, went back in bed to sleep. Woke up feeling good at 11:30. Got out of bed at 12:15. Washed hair. Very tired today - went up to bed about 4 pm and wanted to stay there, but came downstairs for dinner, then back upstairs and bed at 11:15. It was a gorgeous day, high 89°. I wanted to hang outside some, but I was too tired to take myself to the store to buy a lounge chair, and everybody else was busy. Not quite independent yet. Sigh.

Monday, May 31
No infusion today; Memorial Day.
         Woke up at 1:30 pm. Still feel like sleeping, but no water for pills, so went downstairs. Can't bring myself to do that until 2 pm, though.
         I bet I have Carol's cold.
         End up downstairs Internetting forever - starts out positive, looks like CFS politics may actually be productive this time, maybe the squabbling and backbiting won't halt everything in its place. By the end of the day, have lost that hope. Did have a nice talk with Pat in Wisconsin for about an hour. In bed at 2 am. Didn't sleep well; worried about the infighting with CFS politics. Not good to worry like this. Tell myself to quit; frustrated that the infighting is going to chase me out - but I know eventually it will. Caught between should's and ought's and want's.

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February

March

April

May

June

July

August

JUNE

Tuesday, June 1 - 34th infusion
Had a terrible time sleeping last night. Not in any shape to drive myself to my infusion, so Bob took me. Rested and did some Internet at home, recovered enough to go to the Phllies. It was a good game, though they lost, on a lovely night. We left the game at 10:45 after the 8th inning; it was still going on when we got home - 12 innings and 4 and a half hours. Went to bed at midnight again after watching the game finish. Back on magnesium - had been out of it for some time - and slept much better.

Wednesday, June 2
Overcast, high 89°, very humid. Feel much better - maybe it's the magnesium. Got up at 10:30 determined to get some work done on Jack's paper - the editor has written saying that the page proofs should show up soon, and he would like me to cut it down from 12,000 words to 9,000. Can't seem to bring myself to edit, though.
         Went to the Blue Rocks with Bob and Breck and Jenelle - sat right behind the home dugout with our feet propped up. Walked around looking for interesting food (none) - walking was easy, but the steps were still a problem.
         Thunderstorms in the night; woke up 3 am, sweating and coughing. Sat up for a while, then all was fine. Do I have a cold? We joke that getting a cold (meaning getting the symptoms of a cold) would be a sign my immune system was starting to work again, a mixed blessing. Or do I have chlamydia pneumonae, or that lung disease that comes from house mold? After all, I had chronic bronchitis for four years before the collapse (then no bronchitis afterwards). I remember black ooze that developed when the waterbed sprung a leak - twice; it dried into brown dust that I had the job of cleaning up; perhaps some got in my lungs. Would it still be a problem? What about the basement with all the mold down there? What about the plumbing leaks in the walls? Would Ampligen kill that stuff in my system, or would I need to try a different protocol eventually? How would I know?
         This disease sure makes you paranoid, I thought.


WEEK 18

Thursday, June 3
Woke up around 10:30 with a sinus headache. Came down at noon for coffee. Very humid. Did some internet. Very tired. Struggling. Didn't get upstairs until midnight, and had trouble sleeping because of the headache. At one point I had to use a cold washcloth on my eyes and forehead.

Friday, June 4 - 35th infusion
Woke up at 8:30 feeling surprisingly well. Drove myself at Dr. B's - had to be there at 10 am for an exam. I've lost 5 pounds! (Not a lot, I know; I'm still quite fat - but at least it's turned around and is heading in the right direction!) After the infusion, I stopped on the way home to get a sandwich. Saw the activity monitor had arrived; it was set to begin at 8 this morning, so I went ahead and put it on and wrote 2 pm in the diary. Napped briefly, then got dressed to go to Baltimore.
         We returned the wheelchair today! For all it's cost to rent one, we could have bought two. But it feels like a major victory to have it gone.
         Sat in the front row behind the Phillies dugout for the Oriole's-Phillies game. Curt Schilling recognized me - he has always been so kind to me in the wheelchair; has so much heart - came right up and said, "WOW! You can walk!" Yep, I can walk. And it feels great, I told him.
         The Phillies won; stayed a bit late watching kids get autographs (we don't need to do that ourselves, but I leant some kids pens). Got home at 1 am. Thank goodness it was cooler, less humid, or I wouldn't have been able to stay out that long.

Saturday, June 5
Slept, really slept. Woke up a few times briefly, but then heavily back to sleep very quickly. Finally got up at 1 pm to take my morning pills, but went right back to sleep. Dozed, watched TV to 4. Mom called; I talked to 4:15, took a bath and got dressed. Head still hurts, just feels like a water balloon. Rats, a political phone call; they need me to go downstairs and turn on the computer and read something, and I do not feel like it but of course I do it. Send an email. Feel better sitting up - of course, because this is probably sinuses - paradox, because I'm tired and want to lie down. Finally get the day over with at about 11:30.

Sunday, June 6
Woke uyp many times in the morning, kept falling back asleep. Stayed in bed until 1:30, then took a bath and got dressed. Feel good now, feel rested (finally). Loaded the dishwasher, cleaned the kitchen a bit. Now time to rest. Felt a little shaky loading dishes but otherwise okay. Stayed up late internetting - forgot to take sleeping pills - DOH! Finally took them at 12:30 and went to bed.

Monday, June 7 - 36th infusion
Perhaps because I took my meds so late last night, I had a lot of trouble getting up this morning. Drove myself to my infusion, did fine. Took a three hour nap from 4:30-7:30. In bed at 12:30 am. Hot and sunny today - high 94°.

Tuesday, June 8
Back up to Dr. B.'s today for a treadmill test; Bob has to drive because we don't know how it will affect me. I was supposed to do this before the Ampligen trial started, but I could barely walk - both Bob and Dr. B. had laughed at the thought of putting me on a treadmill and turning it on - I would end up slammed into the wall, Bob said. But now, it shouldn't be that difficult.
         The test lasted 8 minutes - I didn't realize there would be hills. The inclines were hard. Went home to bed, slept all evening. Able to walk downstairs and get my pills pretty easily, though. Thought how ironic it is that I have to get up from sleeping to take pills to sleep, but I know if I don't I'll wake up again in a couple of hours and not be able to return to sleep - like most PWC's, my diurnal rhythms are all backwards!
         Sat up for a while in bed watching the Phillies pull ahead of the Yankees in the 7th in interleague play - ah, always satisfactory to see the Phils win, even sweeter when it's the Yankees losing. Don't like Interleague play at all, but I guess we're stuck with it.
         Another record high, 95°.

Wednesday, June 9
Woke up feeling surprisingly well today - I guess being careful after the treadmill test yesterday has spared me the usual payback the day after. Went downstairs around 1:30, did some internet until 5, then got dressed and went with Bob and Carolyn to the Blue Rocks, then Kahuna's deck where we were going to have dinner but thankfully decided against it. Bob wanted to go back to the Blue Rocks, but I had to veto it - I was already feeling the negative effects of the weather on my NMH (feeling lightheaded, weak, and that vague thing they call "malaise"). Went to a camera store in the mall for Carolyn's photography course at UD this summer; then the Iron Hill Brewery for dinner, and finally Service Merchandise to look at their cameras. Carolyn and I went home about 9:30 - Bob went back to watch the end of the Blue Rocks game. I had no discernible effects from yesterday. Temperature only 89°, but still a problem for me today.


WEEK 19

Thursday, June 10 - 37th infusion
Rained during my drive to my infusion - a new experience for me. Everything is a new experience, it seems. Sometimes I feel like a kid, giggling at playing grownup. After my infusion I ran a few errands, then went home. Rest of the day alternated some internet and some sleep. Fell asleep around 6:30 pm, then woke up at 11:30 and went downstairs to check email messages - didn't go back upstairs until 2 am. I'm supposed to go to Washington with the same group to lobby tomorrow, but they haven't called to say where we will meet. That's why I keep checking the computer, the voicemail. Try to phone, nobody answers.

Friday, June 11
Overcast, then clear and pleasant, high 78°. A good day to go to Washington, but it never materialized. No one called either. Bummer. Oh well, this weekend is going to be whacko enough; better I should rest up. Still, feel hurt that they wouldn't even call and tell me not to wait for them. I can't keep emotions out of my relationships with people; I can't be cold and detached; I make a lousy politician.
         Everyone is showing up today! Mom and Dad, Eric and Traci. They arrived around 5 pm, then Carol was late and hassled, couldn't find the right graduation dress, cried. Traci went upstairs and talked to her and everything turned out okay. It's nice for Carol to have a big sister - sorry that they can't live closer. We had Traci's birthday dinner at the Steak and Ale, then afterwards Eric, Traci, Carolyn and Seth went to a movie. Bob is busy with Stonier Banking School at UD, so I drove Mom and Dad back to the motel, and myself back home. HA! It wasn't even difficult.

Saturday, June 12
Carolyn officially graduates from high school today; the ceremony is tonight at the BOB (the Bob Carpenter Athletic Center at the UD campus). Everybody met at Newark for lunch, then Carol, Traci, and Eric went off to find Carolyn a dress, and I drove Mom and Dad home - stopping at a jewelry store to buy Carolyn a beautiful necklace for graduation.
         I tried to nap at home, but there were too many phone calls. After two hours, I got dressed and we left; we're meeting Bob there. Vest (who runs the facility; also a friend who kept an eye out for our son when he was at UD) gave me a big bear hug when I walked into the BOB - he hadn't seen me since basketball season, when I was confined to the dang wheelchair.
         I had no trouble walking up to a seat, walking around the building. Looked over to the other side, on the floor, where the wheelchair guests were lined up - marveled that if I hadn't started Ampligen, that's where I would be. I only cried once, when they announced the first of Carolyn's friends and I suddenly thought of all of them breaking up and going in separate directions. Bob had a lot of friends to greet - while Carolyn was in high school, and I was an invalid, he spent a lot of time helping out with the band - he and Carolyn went to Ireland when the band played for St. Patrick's Day, and this year they had all gone out to L.A. for the Rose Bowl Parade. The A.I. Band is quite an experience; when I had to stay home while they went traveling, I would get the blues badly. But I'm glad Bob was able to share this with Carolyn.
         Drove my parents to dinner at Applebee's, then home and in bed by midnight.

Sunday, June 13
Set alarm for 10:15, awoke with some difficulty, went downstairs to get coffee, heat up a bagel, bring it all upstairs and put on a movie. Will pick up Eric and Traci at their motel at noon.
         Every muscle in my body hurts! I feel like I've been skiing, but it's a good feeling. This has been a good weekend. Picked up the kids, came home, later went to Seth's graduation party. Then drove down to Newark, where Bob took over the car; drove to Baltimore and met Traci's parents at a McDonald's in White Marsh. They drove the kids on to the airport, and we came home. I drove back from Newark myself because Bob still had to be at Stonier. Used to do this all the time, before my illness, but it's a surprise to me that I can do it now.
         Came home and changed to go to bed - had one of those weird attacks where I'm hot and cold at the same time, neither awake nor asleep, just weird. CFS? Perimenopause? Who knows? Lasted over three hours, but by the time Bob got home at 11:30, whatever the attack was, it was over.

Monday, June 14 - 38th infusion
Woke up at 6, stayed up a bit while everyone else got ready to go off to work, fell back asleep and got up when the alarm went off at 9:45. Drove myself to my infusion, then had eggs at HoJo's and worked on my history paper. Ah, the old days - I used to do that all the time. When I had writer's block, I would go to HoJo's and order breakfast, then sip coffee and write on long legal pads. The computer sort of broke that pattern up - felt silly taking all that time handwriting when I could type so fast. But still, sitting someplace comfortable and handwriting is the best way to break up writer's block.
         Picked up stuff at Jensen's, the home, back out to leave Rx's at drugstore and go to pet store - looking for a gate to keep Maggie from getting into the room where the cat lives in bad weather, but still let the cat have the freedom of the house - no good, can't find anything that will work.
         Back home dealing with the cat and the dog, slept from roughly 4:30 to 6 pm, went out to dinner with Bob and friends, came home, avoided internet so I could be in bed at 10. Lights out 10:30.
         Very humid today, though high only 83°. Thunderstorms.

Tuesday, June 15
Lovely day. High 83°, but not so humid. I'm tired, and my chest kinda hurts. Got up around 11:30; Nancy is here to clean.
         Bad day on internet. CFS politics has reached a low point; there are threats flying about. Someone has threatened to go to the FDA and try to get them to stop my Ampligen unless I quit writing favorably about it. I don't think they can pull it off, but I am surprised at the depth of my fear. It makes me physically sick, nauseous.
         Drove myself to get Rx's at Happy Harry's. Carol locked her keys in the Subaru, and called looking for her Dad - but I could go bail her out myself, and so I did. Made me feel competent. Forget internet, forget CFS politics. I should live my life.
         In bed at 11:30.

Wednesday, June 16
Terrible day. Awoke with a scratchy throat around 6 am, went back to sleep and throat okay when I wake up again at noon. Have to decide whether to bail out completely from CFS politics - I don't want to act from fear, but I can't continue like this. No one to stand up for me; all busy with their own things. Too small a group for this much trouble. One phone call at 12:45 and I'm crying again. Cry too much, too long. Took a nap at 3:30; wake up with a splitting headache but feeling better. Watched TV with Carolyn until bedtime at 11. When I'm with Carolyn, I am not afraid.
        


WEEK 20

Thursday, June 17 - 39th infusion
Chilly, Humid, wet day. My mild fever has returned - 99.9°. I don't feel so good. Drive to the infusion, buy a couple of things, come home and have a sandwich, go on internet. Still making my decision. Go upstairs at 6:45 and fall asleep. Wake up at 9:30 and make myself some eggs and ham. Stayed up on internet again, in bed at 2 am.

Friday, June 18
A Godawful day. Started out okay; I washed my hair, got dressed, felt better about life. But then I went on Internet. There was a vicious post from a person who was supposed to be my friend, forwarded verbatim to a discussion list by someone who was also supposed to have been my friend. This is too much. Great gasping sobs. I am crying like a broken-hearted teenager. When will I learn? You can't trust these people. They play games. I have been a pawn all along; a bargaining chip. I guess I'm still too sick for this stuff. But it's also like high school, which I never did very well when I was in high school. I do not understand deliberately cruelty; never will. I do not understand putting up with it either. I formally resign. Go to bed at 6:30. If I sleep, maybe I can put it all behind me.

Saturday, June 19
Got up around 11:30, took coffee outside on the back deck and read the newspaper, as I used to spend my summer mornings before I fell ill, throwing the ball from time to time for the dog. She is so happy; she's missed anybody playing with her. Irish setters are playbabies - we have always had one because we used to be playbabies too, I guess.
         Turned on internet; a few people wrote me very nice messages, but somehow it just reminded me how depressed I was over all this.
         Carolyn and I got Chinese takeout and watched "An Officer and a Gentleman," then "West Side Story." That helped a lot. But then it was bedtime again.
         I need to get out of here! I am so tired of being trapped - trapped for so long in a body that wouldn't cooperate; it's better, but not enough better that I can just take off for a while. I feel trapped in internet, too. Discussion lists that depend on me to keep them running, and I should really leave. Thank God for Phyllis, who runs Sasyfras most of the time, and Pat, who runs Disinissues all of the time. But Phyllis will crash, and Pat will crash, and I have to go back and run them again. Sick people shouldn't have to be doing this - but no one who is well is willing to. So we try anyway. How do I move on from this? I don't know.

Sunday, June 20
Got up around noon, washed my hair, went out to brunch with Bob and Carolyn. Slept a bit, worked on going through boxes and books to find enough for a bibliography for the Greene and Pole essay. Also worked on Carolyn's schedule for next year; ended up staying up until 2 finishing the bibliography; took some books back upstairs and put the library books in a box for Bob to take back to school. The paper is done! No more changes now.

Monday, June 21 - 40th infusion
A cool and rainy first day of summer. I find I can fit into some khakis that I haven't been able to wear in two summers!
         Drove myself to infusion, went by Einstein Bagels on my way home. Slept in the afternoon, then went on internet and stayed up until 1:30 again.

Tuesday, June 22
25 years since my first date with Bob. I would like to celebrate it big time, but we have tickets to the Phillies; that will have to do. Lovely day, high 84°.
         I get yelled at by the politicos for an email I never wrote. Lovely. Somebody's forging my email. Just what I need. UGH! I quit, what else do they want? Will these nuts never go away and leave me alone? Thank goodness for the Phillies tickets; Internet gets turned off.
         Phillies game fun tonight; saw a bunch of old friends. Carolyn came with her camera and took some pictures of the stadium and fans for her photography class.

Wednesday, June 23
Lovely day, High 88°.
         I make a decision today: no more skiing with Mr. Fear. When I was a new intermediate-level skier, and needed a lot of space for crisscrossing the slopes and turning, I was always afraid of the fast, somewhat out of control skiers, who would slam into you if you didn't watch out for them. It's not supposed to be that way, but nobody enforced the rules any more and the new skiers didn't care; they blamed you when they smacked into you. So I took to trying to ski with my head turned backwards, looking at who might be coming down the hill and waiting if somebody was coming down fast - which meant it took me forever to get down the slope. Drove Bob and Eric crazy. Finally I learned to make shorter and quicker turns, so I could point my skis down the fall line, ski a bit faster, and yet remain in control. I had to break the habit of looking behind me, and I did it by chanting to myself, "don't ski with Mr. Fear." Sounds silly, but it worked. So now I decide to forget about the politicos and their threats and games. No skiing with Mr. Fear. Move on.
         Enjoyed internetting in the afternoon, then stopped at 4:15 to get ready to go to the Orioles-Red Sox game. I was grumpy at first about the long drive, but ended up truly enjoying myself. We sat where we felt like, even scrambling over seatbacks when someone showed up with the tickets to the seats we were in - again, like the old days with Bob, when he and I moved around stadiums as if we owned them. Been a long time since I've been able to do that. Made me feel spontaneous again, fun. Back home at midnight, lights out 12:15.


WEEK 21

Thursday, June 24 -- 41st infusion
Drive to infusion; have a tough time - it takes 5 sticks and at least a half hour to find a good vein. Ouch. Tracy glances at me sideways as she comes in for her infusion.
         Pick up bagels on the way home, then in bed by 1:30 - dozed, slept, watched TV. Bob went out to dinner, brought me home a meal; ate upstairs, dozed and watched TV into the night.

Friday, June 25
Continued through the night as I had yesterday afternoon - slept through movies, awoke when they ended. Had a devil of a time waking up this morning, but I think I'm awake at noon. That's okay. I'm going to be active in L.A. next week, so I must rest now. Salsa's for dinner, bed at 11.

Saturday, June 26
Ran outside like a bat out of hell at 8:30 am because I heard the cat in a fight - dang black and white cat from across the development is back. Chased it away, gave Skid some more food (maybe not the best idea; maybe the big cat will come back for the food) - but Skid refuses to come inside and it's the only thing I can think of to let him know I care. I let Maggie out (and in) and came up to bed. Up at 11:30, a little sleepy, but probably should get started with L.A. plans. Eyes scratchy.
         Bob and I go to the Blue Rocks; I stop at the Clearwater Creek outlet next door, buy a bunch of clothes on sale, then end up going up and down stairs at the Blue Rocks in the high heat and humidity - suddenly have a major NMH moment; almost pass out; have to bend over, then sit in the nearest seat. Ask if they have a place to lie down, no they don't (and Bob is aghast at the question). So I have to come home. Have the runs - seems to be the usual outcome when I have been overactive outdoors. Discouraging.
         Hot and humid today, high of 89° deceptive. Feels much worse.

Sunday, June 27
What a mystery this disease is. I am very confused. Now, even a week from quitting all the CAB meeting politics, I wonder at myself for doing so. How can I be so upset by these people, when I've known for years how they behave and the things they do? Why do I feel a need to write - why does an order not to write anything more about my experiences with Ampligen upset me so? But then, why should they care what I write? Why does it upset them so? I have no answers; I just know that I get upset far too easily over these things, and getting upset hurts my health, and my health right now is what I should be focusing on. I have been assured by many people that they can't take my Ampligen away. I should trust, and relax. Talked with Trudy for a while; wish everyone was like her. Trudy, Pat J., Pat F., Phyllis, Sue C. - why can't everyone be like these people? Focus on getting things done, not maneuvering around and elbowing everyone else out of the way? How can they be so patient through all of this? I just can't. But, Trudy is right, it is time for me to focus on getting better, not on gutting out unpleasant politics! Must trust, must relax. Don't ski with Mr. Fear.
         Can't seem to get off any meds. Couldn't get off Zoloft, don't know when I'm going to get off Doxepin and Klonopin. Will I be on them forever? I imagine the thyroid and florinef probably are forever.
         I think I'm frustrated because I can be so well, yet I am still so sick. I'm so tired of being sick. But there has been a change. I was an invalid before - sickness overwhelmed every moment of my existence, stole my life away from me. Now, I'm a normal person who is recovering from a devastating illness. That is different, hard to explain, but very different. I'm too impatient. Must take time to recuperate, must wait. Must trust.

Sunday, June 27
Hot and humid - high 90°. Got up at 11 and went to brunch with Bob and Carolyn, then spent most of day on internet. Went to bed around midnight.

Monday, June 28 - 42nd infusion
Today I get my wish from last week - I get out of here!! We fly to L.A. today. I have to get up at 9:30 to go to the infusion. Could not find a new vein; I am so bruised on my hands and forearms I look like a battered child! Maureen had to accept defeat and return to the one good vein in my left elbow. Infusion took an hour because the filter kept clogging up. Came home, took a bath, washed my hair, packed, got it all done on time in spite of the earlier delays. There are some advantages to not having much of a wardrobe!
         We left for Baltimore at 3:20 for a 6:30 flight - now, that's cutting it a bit short, especially with errands to run in Newark. But the flight didn't get out of the gate until 8:45, then we sat on the damn tarmac until 10 pm. This was the flight from hell, for sure. There was no room at all; we were squished against a back bulkhead, with our knees pressing into the seats in front of us. At least Carolyn slept a little. Got into L.A. at midnight Pacific time, 3 am our time. Then we had to rent a car - they lost the reservation, then they sent Bob to a space just in time for him to see someone else driving the car away. Ooops. Back to stand in the line again. Two cars and one hour later, we finally drove out of the Alamo. Oddly enough, I'm so used to that 3 am feeling in my head from CFS/M.E. that I'm the most awake of anybody. Carolyn sleeps in the back of the car as we drive to USC. She was supposed to spend the night in a dorm, but we just go ahead to our hotel room with her. Lights out at 2 am Pacific time - that's 5 am Eastern time. Just a bit behind schedule.

Tuesday, June 29
Surprisingly warm and humid for L.A., with a high of 85°. I got up early with Carolyn and walked over to campus to register her, then walked back to the hotel to change into something cooler and get her bags together so Bob can take them to her dorm. Walked all over the place all day. It felt wonderful to walk. I was very conscious of being there last year for her interview. The paths were not particularly wheelchair friendly, so even though they gave me my own little tour in a golf cart, I ended up spending most of the time sitting under a tree in my chair. I enjoyed myself okay last year, but this year, to be able to be with everyone else, like everyone else - unreal. I don't know which was more unreal - that I wasn't able to walk, or that I am.
         Walked back to the hotel in the afternoon for a two-hour nap, then met everyone for dinner. Got to see the floor where Carolyn will be next year; even met some kids who will be there with her. Everyone here seems nice, friendly, smart - much like Carolyn. I can't believe how lovely this seems. Here are the fruits of the quick turnaround on the housing request - she is exactly where she wants to be, and it looks like she will be with the right group of kids, too. Stayed through most of the evening's events, then finally pooped out around 9 pm and came back to the hotel room to join Bob, who was already fast asleep in bed. Carolyn stayed in the dorm. I feel fine, except for my feet - the soles hurt terribly.

Wednesday, June 30
Not so humid today, thank goodness - a pleasant high of 83°. Had to wear khakis and sneakers to spare my sore feet, so I was very grateful for a break in the humidity. Walked everywhere once again. The feeling of freedom is indescribable. Carolyn's registration went very well; she got exactly what she wanted, got her I.D. card - I guess she is now a USC student.
         I sat on a bench and watched people pass while Carol was registering. A little girl was pretending to pick the beautiful flowers, then she picked up old eucalyptus leaves and put them together to look like a flower and gave it to her mother. There was a pleasant, dry breeze. I suddenly yearned to go back to campus - to a campus like this one. But I don't know if I can; right now it's doubtful I'll ever have the strength to teach again. I had forgotten how much I loved it. I gave directions (accurately!) when people came by and asked, and fantasized about being at a research university.
         Went to the Dive for dinner, only to find out to our disappointment that it had closed over the winter. Ended up at a mediocre and overpriced Chinese restaurant - did get a celeb sighting (James Spader with his a couple of kids - apparently they didn't know the Dive was closed, either). Left LAX at 10:30 pm on the red-eye. Got no - zero, zippo, nada, zilch - no sleep at all. If you don't have a window seat, you're screwed for getting any sleep because there's no place to lean. And once again, I hate having to be fat. They don't make seats for fat people. So, I read newspapers most of the time, tried not to think about how I felt physically. Lord knows I should be used to being uncomfortable by now!
         We arrived in BWI at 6:15 in the morning Eastern Time.

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February

March

April

May

June

July

August

JULY

WEEK 22

Thursday, July 1 - 43rd infusion
Bizarro world today. So sleepy, but somehow I can function. In that world of drifting in and out of consciousness, where two seconds in lala land can feel like two hours. After touching down at BWI at 6:15, we got to the car and made it out of the parking lot at 8 am. Bob drove us back home; Carolyn showered and dressed and he took her back to campus so she wouldn't miss any more summer school classes. I napped for two hours, then he arrived to take me to my infusion. Had a different nurse, but she did okay. I've gotten rather dependent on Maureen and her air of quiet competence. Back home at 1 pm, brought two glasses of water upstairs and went back to bed. Wrote five days of diary entries. Spend rest of day in bed, dozing or watching videos. Thinking again of how much I miss college students, how much I miss universities, how much I miss being a professor. But happy for Carolyn; it was a fruitful trip.

Friday, July 2
Hot and humid, high way in the 90s. Slept until 12:30, then did some internetting and watched a movie with Carolyn. Took a bath and went to the Phillies for fireworks night. Our seats were upstairs - Bob always gets a block of seats in the 700 level and invites friends from UD to join us for fireworks night; they look better from up there. But it was threatening rain, so we started out downstairs instead. Bob and Carolyn went upstairs and left me downstairs; never came back, so I finally took the elevator up. Hadn't been up there ten minutes before it started to rain, so I walked back down. Got tired of being by myself, took the elevator back up. Rained again, walked back down again. The fireworks were good, but I was in pretty bad shape by then. Walked back to the car. Don't feel so good.

Saturday, July 3
Carolyn woke me up at 2 pm - it felt like 8 am. I couldn't bring myself to go downstairs. Given all the walking around at USC, then my misbehavior last night at the Vet, I'm not surprised that I'm paying the piper. Feel rather stupid. But also very confused. Who am I? Nothing heavy, calm really - but I feel confused about my goals, my future, what's going on with my life and my body. I'm not who I was in 1994. I'm not who I was in January, either. I don't know who I am.
         Bad pain in hips, but otherwise glad to stay in bed all day. Temp up to 98° outside and the humidity is still high; best to stay in the air conditioning.

Sunday, July 4
I had hoped to be well enough to have a traditional July 4th dinner outside on the back porch, but I wasn't - Carolyn had already made plans to go over to Seth's big family outing anyway. They have a good view of the fireworks from their back porch; we're invited, but feel too shy to come.
         By mid-afternoon I have a nasty sinus headache. Take Sudafed and Tylenol, get the Vansenase renewed and start it back up again; patched up enough to go sit in the heat and watch the Hockessin Fourth of July Parade. I ask Bob why Carolyn isn't marching with the A.I. Band - he says - You've forgotten; she's graduated; she isn't in the band any more. Went home and slept, then we drove to Wilmington for the fireworks, only to find out that they had been delayed to the next night. We drove around until we found a spot to watch the Hockessin fireworks (and not get too blocked in by the traffic) - they were okay. Feels funny - the last couple of years we've watched the Fourth of July fireworks from a different city, because we're usually already at the AllStar city getting ready for FanFest. My headache is back; I go to bed at 10 pm and try to sleep.

Monday, July 5
No infusion today; it's the formal July 4th holiday and Dr. B's office is closed. Kind of throws a monkey wrench in my plans, though, because I want to go to Boston at the end of the week. Oh well.
         I get up at 11 when Nancy arrives to do the house; try to do some internet, then collapse at 5 - couldn't go to the Phillies game; stayed in bed and slept to 8, watched Gone With The Wind on TV until midnight, then back to sleep.
         Very hot and humid - tops out at 100°. Just as well that I stayed indoors. But I feel crummy anyway.

Tuesday, July 6 - 44th infusion
Awoke with difficulty at 11 to drive to infusion; feel terrible. I think I'm having NMH problems from going to the fireworks Friday night and being out in the heat, bouncing around, standing around. It's still hot and humid; high 98°, another record set. The car was an oven until the air conditioning kicked in. Staying in bed for the rest of the day and evening.

Wednesday, July 7
Lots of phone calls - wanted to sleep late, but ended up getting dressed, got coffee, turned on Internet. We went to dinner in New Jersey with my brother George and his wife Marie; their daughter Jeannie is home from San Francisco briefly. Nice to see everyone; wonder how we ever used to find time to visit. Come home and pack a suitcase, collapse early. Out of Klonopin - go to sleep without Klonopin or Doxepin. Amazing - no restless leg syndrome! I've never been able to go without Klonopin, even for a night, without restless leg syndrome keeping me awake. Has that part of my brain repaired itself?


WEEK 23

Thursday, July 8
Bob left for Boston today; I would have gone too, but I have to stay for my infusion tomorrow. He took the big suitcase I packed. Spent time on internet today. Ate a late dinner of eggs, had a lot of trouble sleeping. Can't quite tell whether it's the late meal or the absence of Klonopin and Doxepin. The heat and humidity has finally broken, at least - high about 88°.

Friday, July 9 - 45th infusion
Up at 8, take pills, fall back asleep for another hour - get dressed in a hurry, go for infusion. Picked up bagels on the way home, then packed a small bag. Carolyn is supposed to come get me on her lunch hour and take me down to the Amtrak station, but there is a glitch - she won't be able to pick me up on Monday because she has a commitment at work. So, I drive the big old Subaru - no air conditioning, 190,000 miles. Stop to pick up water, money, and some newspapers to read; the heat and humidity is beginning to get to me. Drive 20 minutes in this oven of a car down to the long-term parking across the street. Can tell I'm already overheated when I lock the car, but I have to keep going. Get downstairs, cross the street, and there is a long line at the ticket counter. I have reservations, but I have to pick up my tix. After standing in that line for fifteen minutes, I finally get some sense and go over to the machines, curious to see if it will work like it's supposed to. Indeed it did - very quickly, much quicker than the lady at the window. Ticket in hand, I struggle over to the other side of the station; pick up a sandwich and finally sit down. I need to prop my feet up, but there's no place comfortable to do it. I feel pretty awful; definitely having NMH problems, but this is hardly the place to lie down on the floor. Oh well, I figure, I can stretch out a bit when I get in the train.
         NOT. The train was all reserved seating, and every seat was taken all the way to New York City. It was almost as hellacious a ride as the flight to L.A. - the only saving grace is that at least the seat space on the train is more spacious. They kept having to stop the train because they were working construction on the high-speed rail, so we were alternating trains on the one track that was available. The conductors tried to make us feel better by noting how much shorter the trip would be once the high-speed was in - small comfort, since I won't be able to afford the ticket price! As it is, this ticket was awfully expensive for sitting on the track this long. My pleasant train ride up the New England coast with a nice view of the water was gone; by the time we passed New York City, it was dark. At least everybody left, and I did get to spread out, but they never turned the lights out, and they were like daggers in my eyes.
         More stops, more waits. Final insult: Back Bay Station, which is where my hotel is, is closed for ... the high speed rail construction. We have to go partway around the city and come in through alternate tracks to South St. Station, then I have to walk around with my bags looking for the taxi stand, which of course has been moved by ... the construction. It's pretty humid up here in Boston, too. Finally got to the hotel at 12:30 am - about 3 hours late - Bob was already asleep. Didn't get to bed until 2 am. Not in the world's best mood - why did I bother to come, for only a couple of days? Not looking forward to the ride back on Monday. What was I thinking? I want to be normal, to go places with Bob like I used to - but this is ridiculous. I should have just admitted to myself I couldn't do it yet.

Saturday, July 10
Awful night trying to sleep. The Doxepin experiment is over. I will take some tonight. Still off Klonopin though.
         Bob had signed me up to work FanFest in the morning - but he was able to change it to the afternoon after I told him there was no way I could make it there after getting in so late. So I stayed in bed, sort of dozing, until 11 am - took a bath and got dressed, went out to get a sandwich, made it to FanFest in time for my 1 pm shift. Once again, I got the ooh's and aah's over being able to walk - no cane, no wheelchair. Everyone was so nice. I was sort of frustrated that I was not at my best, but it was such an improvement from last year that it didn't matter to them.
         I had a great time at FanFest after all; walked everywhere. Came home and rested, then we went out to Legal Seafood - sat at a table next to one of the baseball Legends (Bob works the room where the Legends sign; I usually work the information booth), Bob Gibson. Nodded and smiled that we recognized him, but also that we would leave him alone to eat his dinner.

Sunday, July 11
Thanks to Doxepin, I did sleep - then didn't want to get up when I got the wakeup call at 11 am. I have a horrendous sinus headache - my ears are plugged up, my head feels like a water balloon. Sat up for a half hour, the made myself get up. Wished I had ordered in breakfast. Decide to go buy sinus meds; Bob told me there was a Walgreen's around the corner - but had not mentioned that I would have to walk up a pretty significant grade. Doesn't matter to him; matters greatly to me. So I've done it again - I'm outside in the heat and humidity, and I'm walking up a hill for a full city block, then turn the corner and walk another block on straight ground. I pick up the wrong Sinus meds by mistake - these have Guaifenesin in them as well as Sudafed and Tylenol (generic, though) - I figure it should help me drain, but it also drains my strength. It does the trick on my headache, but by 3:30 pm I'm too woozy to work at the information booth any more. I sit down on the floor, leaning against the wall, drinking some water, then space out for I don't know how long. The other volunteers order me to leave and call for Bob on the intercom. Nobody can find him, so I go off to Legends to get him myself. On the way I encounter Mary Pratt, one of the original Rockford Peaches, a lovely and interesting lady. That kind of perks me up, but she remarks that I look pale, and I realize I need to move on. It's always strange when an older lady looks healthier than I do.
         On the way back, I rode up on the elevator with a cranky baseball Legend, who had just found out he had not one but two black tie dinners to go to and was not a happy camper about it, and didn't care who knew. That made me laugh, got me out of the blues a bit.
         Rested in bed from 4:30 to 6 pm, by which time the sinus meds had worn off and I wasn't so dizzy any more. Bob had volunteered both of us with the Red Sox, and they called and asked if we could be stand-ins for the ESPN cameras getting set up for the AllStar home run derby tomorrow. I got a new volunteer's outfit, got an ID, and off we went to Fenway. Pretty neat. I got to sit in the dugout, run around a bit on the infield. I'll have to leave before the home run derby (my favorite part of AllStar week) and the game, because I have to go back for my infusion - but getting to be in Fenway, and on the infield, with all the AllStar decorations everywhere, made up for it. This was fun. Again, I think, I could not have done this last year. We go back to Legal Seafood (why go anywhere else?) - Bob has made friends with the maitre d', and we are seated right away. In bed at 10:30, more sinus meds, more Doxepin, conked out.

Monday, July 12
Boy did I make a mess of things. Somehow I misread the ticket that I bought in Wilmington and thought there was an 11:20 out of Boston - but they had cancelled it; there was only a 10:20 and a 12:20. I missed the 10:20, then struggled to make the 12:20. Finally, totally frazzled and not looking forward to another nine-hour train ride, I walk over to FanFest and ask Bob to leave. Drive me home, I said. Take me home.
         He took me over to a bench and we sat and talked. "Take the plane home; you don't have to ride that stupid train." But the plane may sit on the tarmac two hours, too, I wailed! I said - look, at least go get me something to eat and meet me in the hotel room while I pack.
         Once I started to pack, I decided I could do this. I told Bob to pack the rest and take it home; put the sandwich in my bag, and headed downstairs to the taxi stand. What a mess! The taxis could not get through because of all the private cars unloading people. By the time I get into a taxi, it looks too late to make the train. But the cab driver is an old hand - he says he'll get me there. Along the way, we have a great conversation about Boston, his family, and my disease. I give him a big tip; he's gotten me there just in time.
         But I hadn't counted on the construction. The entrance that I had to go in from the taxi stand had no information at all about where to find any trains. I had to go back into the station, turn around, and look up at the gates to see which train was where. None of the signs was working. The big sign was way over on the other side of the station, and not visible from where I was - I knew I didn't have time to go over there. So I ran back out, and asked where the train to New York was. A redcab pointed at a car about twenty feet away, moving out of the station. I had just missed it.
         In a very bad mood, I returned to the station. A nice looking man in a suit was sitting there, seemed to be used to the station, so I asked him how a person found out what train left when? He said he had just finished a job for the day, and had time to kill before his train, so he was happy to help me out. He carried my bag for me (thankfully) while we trudged over to the big sign - the next train wouldn't leave until 1:40!
         The hell with that.
         I turned to my new friend and asked how you get to the airport by the "T". He took me down to the platform, explained I needed to switch trains twice and then take a bus, and then I was on my own again. But I felt happy now, strangely competent, having solved a problem instead of being stuck with it. It was fun to be waiting on a subway platform again with all the other people in city life, each with their own plans, their own reasons for being there. Took the train one stop, got off and took another one stop, got off and took yet another for about fifteen minutes, and there I was, at the right station. There was a bus to the airport, which left without any problems (and was air conditioned, thank heavens).
         I walked into the airport. There was a very long line at the tourist class window, but nobody at all at the first class window. So I walked up to the first class window - I knew I didn't have the strength to stand in that line! -- and they were kind enough to take care of me. It was now 1:15 - there was a plane leaving for Philadelphia at 1:30, at the first gate down the next corridor. Turned out not that much more cxpensive than the stupid train. In fifteen minutes I was sitting by a window, eating the sandwich Bob had bought me, taxiing out to the runway to take off. There were no delays. I was in Philadelphia Airport at 3! I walked to the SEPTA airport station, took the commuter train into the city, then the R2 back out to Wilmington as I had done so many times before, so many years before. Got back to the Wilmington Amtrak station by 4:15, walked over to the long-term parking garage, had a little difficulty starting the old Subaru, but she turned over and we were in business. Thankfully, the heat has broken here and the temp is only around 80°. Got home by 5 pm, called Carolyn and let her know I was okay, ordered a pizza ... and everything was fine. Even did a load of laundry so I'd have some clothes to sleep in and wear tomorrow. So here I am in bed at 8 pm, taping the AllStar home run derby for Bob - and it all turned out okay!
         Bob called at 1 am; yes, he managed to get a ticket at face value for the home run contest at the last minute, then after that he joined some other volunteers and spent some time working the gala. He sounded so happy; I was glad I hadn't made him leave. But I was also glad I had gone.

Tuesday, July 13 - 46th infusion
Had a little trouble getting to sleep last night, then had to get up several times to let the dog out. Dr. Ablashi needed my blood drawn to run an HHV-6 test on it, and there was no convenient way to get it down there, so I had decided to do it myself. Maureen drew three 10 liter green-topped tubes, and put them in a plastic bag for me. After my infusion, I stopped and got a sandwich and ate it in the shade, next to the Brandywine. Then I drove down to Columbia, MD, where his office is. I made it home at 5:15, tired at the end, but I did it! Whew. The last of my Big Adventure was over. Carolyn made dinner.
         Taped (and snoozed through) the AllStar game. I'm cool about not being there. Doubted Bob could get tickets anyway - but he called at 1 am, saying that he was able to go in as a volunteer! He got in - no one else would have, but he did. I'm happy for him; I feel content with life.

Wednesday, July 14
Paying the piper today. Took the dog out at 5:30 am, then with great difficulty awoke at 1:30 pm and made myself get up. Finished putting together the invitation list for the wedding - Judy had called with an urgent message that she needed them yesterday. Worked on internet a little bit, then back in bed at 7 pm. Pleasant day, low humidity, high 80°, but I didn't get outside to enjoy it.
         Bob arrived home late and very wound up from his adventures - didn't go to bed until 1 am.


WEEK 24

Thursday, July 15
Off Ritalin for my annual two week holiday.
         My neck hurts badly today; perhaps a virus is kicking up again. Got worse as the day went on. Feel very weak and woozy; wonder if it is related to sinuses. Beginning to worry that the NMH may be caused by something unrelated to whatever the Ampligen is kicking - perhaps I have a chiari malformation in my neck (having had three ski accidents the year my health first turned downhill); perhaps it has to do with EDS, Ehlers-Danlos Syndrome, a connective tissue disease my sister and her daughter have. Will have to deal with that separately.
         No dinner; Bob and Carol both had places to go, and I was too tired to drive myself to get something to eat. Ate bagels and cheese. In bed at 7:30 watching movies.
         Just remembered I had no magnesium today - maybe that was a reason for the neck pain.
         Another nice day spent indoors.

Friday, July 16 - 47th infusion
Slept poorly, ears kept clogging up, neck hurt. Took Sudafed/Guia combo from Walgreen's in Boston - slept better; Ultram also helped. Up at 9:30 for my infusion. Hot and humid today, in the 90s again. In bed at 12:45, have to get up at 4:15 to go to Baltimore for Orioles game. Didn't particularly want to, but I enjoyed it once I got there.

Saturday, July 17
Record-breaking heat wave continues. Woke up late, at 1:30 pm. Was doing internet, when learned of JFK, Jr.'s death. Stayed up to 2 am watching the news and making a website for Karen and co. Have tentatively gone back, now that the ones with the worst tempers have left. Still don't feel part of the group, but maybe I can be of help with the website. Learning how to make a clean-looking site using tables; also learning how to do frames. Want this to look nice.
         Did a quickie test for Chiari malformation - tried to stare at the ceiling with my head back, but it hurt like hell and I quickly stopped. Not quickly enough; it made me stoopid for a while, unable to do anything except stare at the tube. Guess I have to see more doctors. Ugh. This close to six months in, it's clear that Ampligen has cleaned up so many problems in my brain, but I still have significant NMH problems.

Sunday, July 18
Ugh - no sleep at all last night. Slept some during the day, then internetted and watched West Side Story, in bed at 2 am. Did not go to dinner with Bob and Carol. Concerned about the heat - high today was 97°.

Monday, July 19 - 48th infusion
I feel much like I did just before the collapse back on October 24, 1994. I could probably push myself to do more, but then I might collapse again. Bob forgot about my infusion and left me that old Subaru wagon without air conditioning - a bad move with the temperature so hot and muggy - set a Wilmington record today at 100°. Nevertheless, Maureen was able to get an infusion into my right arm!
         Came home, did about an hour of internet, had a bagle with cheese, read newspapers. Headed up to nap at 3 pm, just stayed in bed after that. Weak from the heat.

Tuesday, July 20
Woke up around 10, dozed, came down at non and Internetted to 5 pm. Back upstairs, washed hair, sat in bed talking to Bob. He's leaving for another week of banking school, this time in Connecticut (gotta earn those $$$s for Ampligen costs). It poured last night and this morning, but then it was very clear. The heat has broken, thank heavens - the high is only 81° today. I did some internet for three hours tonight, watched the news. Odd to think about; 30 years ago today I watched the lunar landing from a temporary TV set up in Newark Airport, waiting to meet my sister so we could fly together to West Virginia for my grandfather's funeral. 30 years.

Wednesday, July 21
Woke up around 11, got up at noon - had a bath, got dressed, typed out a list of the meds I currently take. Have my first appointment with my gynecologist since I collapsed in '94! Dr. Anderson pronounced everything okay, and we talked a little bit about how Carolyn was doing - he delivered her 18 and a half years ago. Then I drove to get my EKG for my 24th week on Ampligen - won't Dr. B be surprised tomorrow! I always put this off because I needed someone else to drive me - but now that I can do it myself, I just went and did it myself. Right on time! While there, made an appointment for a mammogram, since the place I went to back in 1990 is in that building. On the way home, went to the store and picked up some groceries.
         On the way back home in Carolyn's car, I thought of her having to drive the blasted Subaru for a whole week, and decided this was ridiculous. After work, she came with me down to Bayshore Rentals in Bear (near the Canal); we picked up a new Escort wagon for $180 for the week, then ate at Salsa's on the way home.
         Felt very proud of myself for getting so much done. Instead of having to whine and nag someone else to do things, or sit there for a week peeved at Bob for taking the good car to Connecticut - I did something about it! I fixed it myself. Independence.
         It also seems that I will be spending the next six months patching things up that fell apart for so long while I was ill. One thing at a time, one step at a time. Getting better.
         Pleasant outdoors; high 87° but low humidity. All in all, a very good day for the end of my first 24 weeks on Ampligen.


WEEK 25

Thursday, July 22 - 49th infusion
My biggest fear - that I would not be able to roll over to a second 24 weeks of Ampligen - proved completely unfounded; the FDA approved it without any problems at all.
         It's getting hotter again - high in the 90's.
         Almost overslept! The alarm was set for 10:30, not 9:30, by mistake - but at least it was set. I have my 24 week exam today as well as an infusion. The rental car works great, and I feel rather proud of myself for taking control of the situation.
         The exam went well. I've lost 10 pounds, and I seem to be in pretty good shape. Filling out those forms is hard - it's phrased, "do you need help with," when what I need is more "how many days a week do you find it difficult to do ..." or "impossible to ...." No, even that would be difficult - it can vary within a single day. I don't know how you explain it quantitatively.
         On the way home I bought stuff for dinner at Jensen's and picked up more bagels - this is a deliberate change in habit from when I was sick and had Entemenn's coffee rolls in the morning. Also treated myself to lunch at Buckley's, but it wasn't all that much fun without Bob.
         Did a little internet, but made myself quit so I could go upstairs and nap. I remember my grandmother always took her "beauty sleep" - heaven knows how she managed it with all she did (she ran a farm and taught in a one-room schoolhouse), but my father says she never missed it. She was almost 100 when she died; taught at a community college into her 90s.
         It was a luxury today to be able to let Carolyn just sit and rest and watch TV after working today, while I fixed dinner: salad, ham, corn on the cob, fresh cooked carrots and green beans. I cleaned up myself, did the dishes, took the garbage out - it made me feel like I had gained a bit of control over my life again.
         Pleasantness of day broken up by another stupid conference call; wound up afterwards and didn't go to sleep until 1 am. Went back to 20 mg. Doxepin. I think I am going to have to give in and begin taking Klonopin again - I don't have full-blown restless leg syndrome, but my knees seem to buzz when I try to sleep, and at any rate, I'm not sleeping well. I don't want to take this much Doxepin every night.

Friday, July 23
Up around 11, out of bed around noon when the truck came with bottled water. Without even thinking, I ran down the stairs - no adverse effects from it at all! The piano tuner came later. Went on internet, never took my nap; consequently tired at dinner time. This time Carolyn made dinner from ingredients I had bought yesterday and I cleaned up. Upstairs in bed by 8 to watch TV. It's hot again, high 94°.

Saturday, July 24
Got up (with difficulty) at 10 am, washed my hair, drove down to Owings Mills outside of Baltimore to pick up Carolyn's bridesmaid's dress for Eric and Traci's wedding. I drove; wasn't very difficult. Spent almost an hour stuck in traffic on I-95 near White Marsh, but okay because we had air conditioning and I enjoyed the time with Carolyn. (Put the miles on the rental car ...) Picked up her dress, and then we went over to Lord and Taylor's to see if there was anything for me - the first dress we saw we both liked. I wish I was svelte like I was before I collapsed with this stupid disease; harsh to go from a size 8 to a size 20. But this dress is beautiful. Picked up a couple of other things on sale. I usually hate shopping because it involves standing so much, but I enjoyed it today.
         We ate at Ikea's in White Marsh, made it home about 5 pm after an uneventful drive up Route 40 to avoid the I-95 traffic - pretty views of the Chesapeake. I thought of all the times I drove that route when Carolyn was a baby and I would bring chapters of my dissertation down to Hopkins for my advisors to read. Home by 5 pm, went straight to bed with a lot of water to drink.
         Slept from 5:30 to 8, made myself get up and have something to eat, brought more water back upstairs and stayed in bed from 8:45 through the evening. Still quite hot and humid; high 92°.
         This was rather a normal person's type of day, I think.

Sunday, July 25
Awake several times during the night - almost every two hours - I think I must go back on Klonopin. Get up aound 11:30. I am tired from yesterday; pretty much spend the whole day reformatting the website that was to be a present for my political friends, but is turning into more of a headache. Carolyn made a lovely dinner - she likes to watch the food channel and experiment with cooking and does quite well with it. During long periods while I was sick, her boyfriend's family were the beneficiaries of her cooking because she would go over there regularly, fix meals, and then one of them would clean up - she and they liked the deal, and she got a semblance of a normal family life with things in such disarray here at home. It was nice to have her here cooking now. I cleaned up afterwards, even took the garbage out. I can remember how frustrating it was to get someone to do that as the trash spilled over onto the floor. Now I can do it myself, and the house is staying cleaner (and smelling nicer ...) In bed at midnight, lights out.
         Record-breaking temperature again, high 96°.

Monday, July 26 - 50th infusion
A Laurel and Hardy day - started with the electricity out so that my alarm clock didn't go off, went downhill from there. I wanted to go to Washington to the CFSCC conference, but I got my dates mixed up - by the time I realized when it was, last Friday, Dr. B.'s office was already closed, and Bob was up in Hartford with Maureen's number. He kept leaving the number in the car, and promising to get it the next day. Next day came, no number. Sigh. It's much too late to postpone the infusion; I guess I won't go.
         Underestimated my own stubbornness. Went to the Perfect Cup for breakfast; very pleasant. Wish they had lounge chairs ... still prefer to have my feet up in the morning with the NMH. There was a man in the corner of the cafĂ© typing intently into a laptop; I thought to myself, this is the place I should come and write. Then I thought again ... if only they had lounge chairs ...
         Got to Dr. B.'s at 11 - but the Ampligen was late! It turned out that if I had called when I woke up, I could have postponed it, because they had a new pharmacist at Olsten Nursing and had totally forgotten us. A rather irate Sandy (who has to drive up from Washington with her daughter to get her the infusions) had called at 10:30 to see how long it would be, which prompted them into actually starting to mix it. By then it would take two hours before they could get it to our office. The Ampligen finally showed up at 12:15; Tracy started first because she had so long to go (she has slowed her infusions down because she's started to have reactions again); mine didn't start until 12:30. Left Dr. B's an hour after the usual time, at 1 pm. Forgot to get the Klonopin prescription renewed, rats.
         Then I was seized with the impulse to try to go to Washington anyway. I came home, washed my hair, put on one of the new outfits I had gotten over the weekend, and left the house at 1:55 for Washington - for a 1 pm meeting? This was insane, but I was determined to at least get to some of it. (The CDC was supposedly going to apologize for misallocating CFS research funding.) Had to stop for gas, but otherwise made pretty good time. Made it to South Capitol St. in Washington at 4 pm, but couldn't remember where the Hubert Humphrey Building was. DOH! Wandered around the House office buildings until I remembered it was closer to L'Enfant Plaza than that. (Bob worked at the Comptroller of the Currency in the Plaza from 1977-1980; I remember when they began building all the new office buildings around there.)
         Found the building and parked right across the street after feeding $1 to the meter - by this time it was 4:30. The meeting was over, and I felt pretty silly. But, why waste the visit? Spent some time talking with Nancy Klimas, whose work in immunology I hold in great respect. Stopped at Ikea for dinner on the way home and picked up some things for the house; later stopped again at Acme and TCBY, then when I got home I did a load of laundry! I guess it's fair to say I have more strength. Lights out at 1 am.

Tuesday, July 27
Woke up at 12:30 - went downstairs at 1:30. A bit slow, but otherwise okay. Went on internet cleaning up messages most of the day, also got two loads of laundry done. Caroln fixed a good dinner and I cleaned up, including sweeping the kitchen floor and taking out the garbage. This is getting to be a regular routine - how about that! Feel fine. Lights out at 1:30 am. One more night and Bobby will finally be home again. Still hot; high 94°.

Wednesday, July 28
Had a mammogram today at 3 pm - they repeated it once, and all I could think about was the internet jokes about preparing for a mammogram by lying on the cold garage floor and having somebody drive over your tit ... The radiologist thought he saw a lump, so we then had two sonograms. I saw the second one - there seemed to be something there about 3 cm. in diameter. By that time I was convinced that there must be something pretty nasty or we woudn't be going through all this. I sat and cried. How could I go through cancer just when I was finally getting better from ME/CFS? But after all that, the radiologist decided it probably wasn't malignant and that we should wait and do another mammogram in six months. Not so sure that's a good idea. Will have to ask other doctors about it. (When I ask Dr. B., he thinks I should have it checked into sooner, but with a specialist, so I probably will.)
         Afterwards, run errands at K-Mart, post office, Sav-a-Cent and Happy Harry's (our pharmacy). Took car back to rental place in Bear, ate at the Saigon Restaurant with Carolyn on the way home.
         Took a bath and washed my hair so I would look nice when Bob came home; did some laundry, in bed at midnight.
         Hot and humid again - high 96°. The weather is very strange - 7 days in the 90s here - but it snowed just north of Mexico City today!!


WEEK 26

Thursday, July 29 - 51st infusion
After infusion, went to Jensen's to pick up chicken for grilling. Spent some time on internet, some time fixing dinner and cleaning up. Had a nice dinner at the kitchen table, the whole family. I can't remember when we last did that - it has to have been at least a couple of years. Cleaned everything up, including the grill - just took my time and laid flat on the lounge chair for a few minutes whenever I started to feel tired. It wasn't difficult as long as I didn't push.
         Skipped the conference call tonight; I know it will just put me in a bad mood again. I don't want to do this. I'm not really contributing; I can still finish their website without having to go through more of this yityatting.
         Stayed up too late watching a dumb movie. In bed at 12 am; 20 mg. Doxepin again. Not asleep until 1 am.

Friday, July 30
The heat wave continues - high 94° today and once again very humid.
         Woke up at 12:30 - 20 mg. Doxepin definitely worked, but I fear it leaves me too groggy. Did some internet, then came back upstairs at 4:30 and napped. Carolyn woke me up at 5:30 and we all went out to dinner with Breck and Jenelle. Had a fantastic time - went to a rib place and played "triviaoke," an interactive trivia game where our table was pitted against other tables at that restaurant and others around the nation. I ironed my off-white linen outfit - then went and ate ribs - usually a bad move because I can't eat without spilling things. But ... what's this? I didn't spill anything! Nothing! No barbecue sauce on the dress! Wow.
         We had such a good time playing triviaoke that Bob had to drag us all out of there because he was tired - this time I wasn't the party pooper. A lovely evening.

Saturday, July 31
Heat wave continues - high 99 today! My parents arrived from Charlottesville on their way up to visit George and Marie, whose daughters and grandson were in from San Francisco. I bet the West Coasters were really struggling in that high heat and humidity, but George said that rather enjoyed the heat after such an unusually cold summer in northern California.
         Carolyn and I modeled our wedding togs, then we all went to Buckley's for a nice dinner. Then I became kind of cranky, probably a bit of a monthly mood because there wasn't a good reason for it. In a weird place in my head, I went up to bed and sort of sat there trying to decide what to do next. Then Carolyn did the loveliest thing - she came upstairs and insisted I read a book she had just finished, "Memoirs of a Geisha." I protested that I hadn't been able to read an entire book - and certainly not for leisure! - for five years, but she insisted I try because she had enjoyed it so much. And she made me promise to go to a movie and lunch with her tomorrow, girls' day out. Just the perfect thing; my foul mood completely dissipates.
         Much to my surprise, I fall into the book the way I used to before the illness - reading is not the difficult task it's always been. I keep reading, and reading ... until it is 3 am and I have to put the lights out and go to sleep.


Almost eight years have passed since I wrote these pages. 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


Return to the top of the page.
Return to Part 1: Ampligen Diaries, February-April, 1999
Coda: My life on Ampligen 1999-2007


Other Websites

The CFIDS/M.E. Information Page
Essays on CFS/M.E.
R.E.D.D. (RnaseL Enzyme Dysfunction Disease) Information Center
The HHV-6 Foundation