Return to Part 1: February-April
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
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.
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.
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.
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.
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.
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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