Wednesday, June 23, 2004


it starts tonight. i'll give myself the injection in just a few hours. and i'm TERRIFIED.

see, it's like this...

right now, in this pre-medicated moment, at which point i am not yet undergoing treatment for multiple sclerosis, this medicine, essentially, is perfect. it can do nothing but good. it's all hypothetical, theoretical, ideal, pure.

as soon as that needle enters my leg, it is no longer perfect, it is real. it's either going to work or not work. and that ambiguity is absolutely terrifying.

so, here goes nothing... here goes the rest of my life...

Sunday, June 20, 2004

caitlin and me atop the light house on bald head island.  Posted by Hello

Tuesday, June 15, 2004

4:27 am...

i suppose if you take my regular sleep schedule and back it up a few hours, then i got a full night's sleep. still, there is something disturbing about being awake so early.

i sometimes feel really tired and dizzy and puny in the evenings. i'm truly not sure what is the cause of this--could be the drugs (i'm hoping it's the drugs), could be the onset of summertime, could be the disease. i really don't understand yet how this disease works.

so many things in life right now are riding standby to this MS. simple things--dishes, laundry, being in touch with friends; but bigger things, too--things that have to do with plans for school in a couple of months. so many things that need to get done. but when i'm at work all day until 7:00 or so, and then when i get home and i'm too exhausted to move, the time doesn't just present itself.

the dog is downstairs crying right now. ah, parenthood...

i am awake now. there is time now. it's way early. i forgot at least two meds last night because i slept through when i normally take them. ugh. too many pills. too many chemicals. i currently have active prescriptions for five drugs. what would i like most in the world right now? to see how i feel when i'm not on any drugs, to feel like myself.

i suppose it isn't so bad. it could be much worse. but i watch people in their normal interactions and i feel like i'm never going to have those again--it's like being drunk without the weird sick part, just the dizzy and out-of-it and a little bit of social insecurity. please let it be the drugs.

i'm on the verge of going to this family reunion/vacation thing and i'm very much looking forward to it, but i always get this mild freak-out in the couple of days before i know i'm going to be with family. it's not that i don't like my family or that things are weird around them, it's more that time spent with family is not a normal part of my day-to-day life. there's something a little jarring about being with those that you are most like. i'm very much looking forward to seeing family (it's my dad's family, the mcnallys). the occasion would have been for my cousin's wedding, had my cousin's fiancee not called things off about a week ago. but the rooms had been reserved and arrangements had been made, and so it has become an excuse to get together anyway.

dad and linda keep telling me that "there are a whole lot of people who want to see you". i have mixed feelings about that. first of all, well, i want to see them, too. but secondly, i don't want to spend the four days i'm away answering questions and feeling like some sort of special case. (and what if i get tired all the time and don't feel up to it, like i've been feeling in the past couple of days? ugh.) in all truthfulness, it will probably only be like that at first, and then in spurts in smaller conversations, which is okay. i guess i don't want to lose focus that the reason for the visit is my cousin, and even though he's not getting married anymore, this is/was still a pretty significant time in his life that deserves to be honored.

dr p would tell me if i shouldn't be going to school this fall, right? she would let me know, she would give me her professional, physician's opinion, right? because i feel really scared about it, that i'm not going to be able to make it, that i'm going to invest this time and energy and money, which is really borrowed money and what if i don't have the energy for what the experience will demand of me?

but i can't stay at my job now. i just can't. i suppose i have some sort of responsibility to myself to move forward with what i want to do. god, but i'm so scared. there are so many things that have presented themselves since march, so many unexpecteds and disappointments. i have no way at all of knowing what is to come.

i read this entire blog about a week ago. my initial motivation for keeping it was so that i could have a record of what i've been going through and so i could see how far i've come. i can't say that i've come very far at all. still the same fears, the same weaknesses, the same doubts. they may have taken different forms along the way, but i haven't yet grown past them. physically i don't feel much better, either. i don't want to die. i don't want to live in some sort of compromised way, either. it seems, though, that i have no choice. i haven't felt uncompromised in three months and what hope do i have or regaining that normalcy?

i should tell dr. p, i guess. i should tell her more of how i feel. but i don't want to be some sort of whiny baby patient who complains all the time. at the same time, i don't like having to sit here with my tiredness and my dizziness if maybe there's something that i can do about it.

i've been trying so hard not to ask this throughout all of this, but right now i'm feeling very much "why me?"

thoughts in the early morning. still not 5:00 a.m. yet. i think i'll fill out some student loan forms. maybe do some research on student health plans. stean is sleeping upstairs. i think i probably messed up his sleep, too, with my jerking myself awake every hour or so and being tangled up in the covers.

i wonder where he is with all of this. i know it's not easy for him. if the tables were turned, i'm not sure that i could stay with someone with a life-long, possibly debilitating disease. i don't know that i have the strength to watch that happen. why does he stay? why would he want to be with someone who takes things to heart so much and gets so upset and afraid and who turns a headache into a death sentence. i can be a terrible patient. i was a terrible patient this weekend with the IV. i get teary-eyed all the time. i'm most definitely going through some depression these days. but still, he's here.

maybe he sees me as his one-way ticket out of philadelphia. he's needed an opportunity to leave this city for years, and he's found that in me and my law school endeavors. or maybe he feels committed to me because we have all of these freeloading pets--a dog and two cats that half of the time i'm ready to just let wander out the door and fend for themselves in the world.

the obvious truth is that he's here with me because he loves me. there's something he sees in me that is more important than disease or disability or anxiety. holy crap that's a big deal!!! i mean, where do i put that? how do i process that in the midst of all the selfishness that i've been feeling lately? i love him, too, and if this were him and not me, i would undoubtedly stay by his side. i can't lose sight of how important it is that i have him with me. i need to get over my stupid illness-obsession so that i can be more mindful of the good things going on right now. stean is brilliant. i'm practically the luckiest girl ever.

(is this the balance? i get to be with someone like him but the trade-off is that i have a stupid disease?)

i can't write anymore right now. i'm not saying what i'm thinking and i'm not really thinking things that are worth being recorded.

new beastie boys album out today. i'll sneak out at lunch and pick that up. and tonight i'll get my laundry done and get packed and tomorrow i leave for NC and a few days' escape. good things. there are good things.

i'll go crawl back in bed with stean, just for a minute, while it's still quiet out and before the sun comes up. i need to put my arms around him and tell him that i love him. we'll see each other through this, i know it.

Monday, June 14, 2004

big words...

talked to dr. p. she said that the fact that i seem to be tolerating the steroids well "speaks well of [my] equanimity".


Sunday, June 13, 2004

my catheter, now that it's over Posted by Hello

dear weblog,

in reading over recent posts, it has come to my attention that you must take me for a total paranoid basketcase. to you i would like to first, apologize for not being more democratic with my ranting and raving, and second, let you know that it's only because i feel so safe in your arms that i am able to give you my lowest and most neurotic moments.

truly--take it as a compliment.

to the rest of the world i am a normal, healthy human being. but to you, i am my most fragile, my most vulnerable.

so, um, i promise to, um, tell you about more uplifting and goodtimes things very soon. just bear with me.

the one who can permanently shut you down if you complain


you know, i'm neither good at, nor qualified for, self-infusion of medications. i damn near screwed it up today, too. i got everything working, but i had to hold my arm (which is in some mighty hematomous pain right now) in just the right position to get the medicine to drip into it.

jill (my nurse) came out last night and switched the IV. she put it in my right arm. apparently i do have really crappy veins--people in the know keep telling me this. she was going to stick my left hand, so at least i wouldn't have a catheter stuck in my writing arm, but i didn't want it so visible since i had teacher training today. so in my right forearm it went, and out of my right forearm it came when the drip finally dripped today.

but now it's all done! i'm finished with the IV phase of my steroid medication!

my vision hasn't returned, though. i guess i was hoping that after dose #3, i might notice some change... maybe it takes a few days more.

today is sunday. this week i have to do a ton of silly work at the office in the span of not quite 3 full workdays, and then i leave wednesday at 5:30 for north carolina for four nights and four days with the family. i'm currently annoyed with my sis (hi caitlin) for dyeing her hair pink (copycat), but i'm sure i'll get over that. or else i'll burst into a steroid-induced rage at some inappropriate moment and start speaking in tongues and seizing.

it wouldn't be the first time.

well, it would be the first time with the steroids.

whatever. i've never in my life been more aware of how necessary vacation time is. never. i seriously think if i weren't on the verge of having this time away from doctors and work and philadelphia, i'd most certainly be on the verge of a nervous breakdown. i damn nearly killed both stean and me earlier trying to get the IV drip to work. damn near killed us both. let me just, for the record, state--i should not be given the responsibility ever again to administer my own IV drugs.

Saturday, June 12, 2004

saline flush...

i feel like such an idiot. i'm a bucket of nerves right now. i just tried to get things all set up for my medrol infusion, and as i was doing the saline flush before i hooked up the medicine, i freaked out because of a small air bubble in the syringe and pulled back the plunger and filled the tubing with my blood. (!!!) so i called the nursing service and the woman i spoke to said she would page the nurse on call, but i sat and waited and waited and cried a little and freaked out and waited, and knew my blood was clotting, and thirty minutes went by and i didn't get a call back. so i called the nursing service again, and was told that they were trying to get a hold of the nurse on call, and they would try another nurse.

so a few minutes passed and the phone rang and it was jill, the nurse who set things up yesterday. and she walked me through some steps and as it turned out, the IV line is clogged and now she's on her way here. i feel like the biggest moron ever because she wasn't the nurse on call, and now she has to come fix my blunder on her day off and she was audibly unexcited about this and god why do i have to be such a paranoid baby about tiny air bubbles?!

i can't even articulate how hypersensitive (or how much of a hypochondriac?) i am right now with this thing in my arm. i feel EVERYTHING, even things that don't exist. it's like this port into my vascular system has rendered me defenseless to all things bad, and the plastic safeguards built into the tubes couldn't possibly be working properly and i'm sure to suffer death by embolism any moment now.

ugh, it's like i can feel the air bubbles moving around. it makes me feel sick and dizzy and really really frightened. i'm looking at it now--this mess of tape and tubes and clamps, all stuck to my arm. who am i? what has happened to me? when will this stop?

me and iv Posted by Hello

Friday, June 11, 2004


i currently have some IV works installed into my left forearm. there's an IV pole in my living room, and a bag full of medical supplies and two bags of solumedrol on my bookshelf.

this is all too weird. why do they let regular people administer their own infusion therapy in their own home? it just doesn't seem like a good idea to me.

also, i'm a little keyed up from the steroids. i could run a marathon right now. i could re-organize my cds and books. i could clean my house. i could finish the perhaps permanently on-hold project of painting the ceilings. i will, of course, do none of these things.

Thursday, June 10, 2004

confirm the diagnosis...

here's the message dr. p left on my cell phone voice mail last night:

"hi miss mcnally, this is dr pruitt. i do have your brain and cervical spine MRI reports. the cervical spine is fine, that's good news. the brain MRI in fact shows a couple of areas different from the one that they were concerned about initially that take up the dye and essentially nearly virtually confirm the diagnosis, in which instance i think you should have a course of steroids because the appearance of these two small areas with the dye to me means we might as well just try to turn it off perhaps the easiest way to reach me this evening would be..."

so there it is. i had gone to see ESotSM last night with paula (it made me cry this time); dr. p had called at some point when i was in the movies. i listened to her message as i was turning my key in the lock to get into my house last night. i got inside, and fell apart. stean wasn't home, the house was dark. i think i kinda stared at my phone for a while and sobbed. two more spots. my spotted mind. i don't understand any of this, really. i suppose there are hundreds of potential spots that could happen in a brain, and i suppose it is good news that there was nothing on the cervical scans, but jesus christ. jesus christ! that's it, right? no more hope that this isn't going to turn into MS... and that hope disappeared so quickly. i got barely a month between the diagnosis of spot number one (may 7th) and the discovery of spots two and three.

i called dr p back. it was about 10 o'clock, so i paged her, thinking that if it was too late, paging her would be less disturbing than calling her home number. and i don't want to be an annoying, freaked out patient (even though "freaked out" is a mild way of putting how i feel right now). she called me back almost immediately, and we talked for fifteen minutes or so. i told her that i was scared, that i had burst into tears when i listened to her message, and i asked her if those two new spots meant that things were getting worse. she said no, it just meant that things were still active, and she wanted to put me on steroids to get rid of the inflammation. she asked me if i had felt okay and i told her i feel like i'm on anti-seizure meds, but other than that, no symptoms. she said i wouldn't be feeling symptoms--these are very small lesions on the right side of my brain. she told me that she's seen patients who have started off much worse than me who had a few things happen quickly, and then things settled down. she said this could very well settle down with me.

(what she didn't say, and i'm sure it is true, is that there are patients who start off with much better than me and for whom things do not settle down.)

so, i'll do an IV course of medrol for three days. a home health nurse will come to my house to set things up, and i'll give myself the drug for one hour three days in a row. then i'll take 10-12 days of oral prednisone. dr. p says the steroids will make me feel, in her words, "revved up". given that i get uncomfortably anxious if i have too much coffee, i'm expecting to need a new xanax prescription to get me through this. but it will clear up the inflammation. and i'm hoping my vision will return. and then i can ride my bike! and maybe even get taken off the carbamazepine!!!

i really like dr. p. she's brilliant, and while her version of compassion is what you would expect from one who is extremely intelligent, she's still been good with me. last night on the phone she told me she didn't want me to hang up the phone and start crying, because, while this isn't good news, it is still much better than what i was being told initially, and there is no reason why i can't continue with my life and my plans for school. she said this only further evinces that we're pursuing the right course of treatment and i am only days away from beginning the avonex treatment. but despite the doctor's orders, i cried when i got off the phone with her.

when stean got home i was still a mess. i had been on the phone with dad for about an hour, and dad said some wonderfully hopeful things, but i wasn't at that point ready to hear them. i'm still not ready to hear them. i said to stean, as we were all in the kitchen (all of us = stean, me, dog, and cats), "this moment, this is the best i will ever be--it's only going to get worse."

it's only going to get worse.

there will only be more spots on my brain. never less. those three that i have will never go away. even if there is a cure, the damage that will have been done up to that point will never be undone.

i've been thinking a lot about the MRI films from april of 2002. my poor brain--so clean and untainted at that point. god, that's such a stupid thing to say, but those two years have gone by quickly, and if i go 2 years with nothing, and then 3 months with 3 spots, what does that mean for the rest of my life?

i have got to figure out a way to stop feeling so fearful all the time. i'm a mess of neuroses--my brain is messy on all levels. i've become claustrophobic. i'm probably mildly depressed. i think about my own vulnerability and mortality all the time. i honestly want to run away from my life, my self. unfortunately that is just not possible.

right now i'm not sure that i can handle this. best case scenario--if things stay the same forever, i'm not sure that i can handle it. my brain. i have a brain disease!!! i mean, i know it could be so much worse--it could be ALS or alzheimer's or something, but knowing that things could be worse does not make me feel better. i feel resentful and jealous of all the people around me who are healthy. i feel angry that i'm now being forced to think about things like pre-existing conditions clauses in health insurance policies or what i'm going to do with my used needles on the avonex. that's fucked up and wrong.

spots in the ground look like lesions. people, especially women, in wheelchairs or using canes or walkers immediately look like me.

i'm getting rid of my pink hair on tuesday. it's not really pink anymore, except in a few places. i'll have boring brown hair again. the thing is, i don't want to look like everyone else anymore. i don't feel like everyone else anymore. i don't even feel like me.

Saturday, June 05, 2004


spent last night getting a brain and cervical spine MRI done at HUP. i had first gone to drop some materials off for work at our classroom site at penn and had some time to kill so i went to a used book store and purchased the following:

_illness as metaphor_ susan sontag
_the moviegoer_ walker percy (when dave passed through town last week he highly recommended this. it was $2. i couldn't pass it up)
_encyclopedia brown, book 1_

totally. encyclopedia brown. for $1.50. perhaps the cheapest good present for stean i've ever purchased.

so, got to the radiology dept at 9:00 for my 10:00 MRI time. read some of the sontag book and waited. and started to get nervous, so i took an ativan, which kicked in too soon and i wanted to fall asleep. then i got nervous that it would wear off before i actually needed it to keep me from being nervous.

i was the only person in the reception area waiting room. i suppose everyone else had cooler things to do with their friday night. finally my name was called and i was led down a hallway that was approximately 1/2 a mile in length to the area of the hospital where the MRI machines, or "magnets", as the nurse called them, were located. i had to do the usual--change into a gown, remove all metal, put my stuff in a locker, blah blah blah. the weird thing was that they made me wait in a waiting area in which two men were sitting. this shouldn't be a big deal, but i've only ever seen single sex waiting areas after the whole strip-to-your-skivs-and-don-this-gown step takes place. i guess i was just longing for the privacy of sisterhood, rather than hang out in a small waiting area where two fully clothed men were watching a baseball game as i'm sitting there in a knee-length hospital gown wearing nothing underneath but my skivs and my grey calf-high socks with the blue stripes and my sneakers. humility, thy name is emily.

as it turned out, the two fully clothed and unhumiliated men were waiting for their wives/girlfriends/womenpals, which prompted fight-the-power thoughts in my head about how the hospital should have a stricter policy protecting patients' privacy when wearing hospital gowns and that if stean had been there with me i wouldn't have needed him to wait with me DIRECTLY OUTSIDE OF THE MRI. geez, he could have waited in the main reception area.

mostly, i felt self-conscious because i hadn't shaved my legs. i always forget to do that before these things. mental note--don't forget next time.

and then the MRI... it was longer than usual, about the length of that research study MRI. it was a brain and cervical spine scan, dr p wanting to have more of the central nervous system checked for MS plaques. she also wanted me to have a thoracic scan, but my dipshit insurance company wouldn't cover it. she (dr p) said that if the cervical scan finds anything, she'll do what it takes to convince my insurance company to cover the thoracic, too.

maybe it was the ativan, or the pure oxygen that was being pumped through the MRI chamber, or the way the whole process is starting to feel routine, or some combination of all of the above, but the experience was much less scary, and almost enjoyable this time. i felt safe, whereas every other time i've felt like i was being buried alive.

the MRI process is loud, and the radiology tech gives you earplugs before you lie down on the table. the MRI sounds like a knocking or a buzzing or a chirping, depending on the scan. but there's a rhythm to each scan, sometimes steady, sometimes increasing in sound/intensity. the scans last from 45 seconds to four minutes per cycle, and each cycle has a unique noise. it doesn't sound nice, particularly when you think about how the noise means that a giant magnet is making pictures of your brain.

i spent my time in the MRI chamber thinking about two things. first, about how the process basically renders my skull and my skin and my hair and my blood vessels completely invisible. the MRI sees the brain ventricles and the grey matter and the sinuses and the eyeballs, but not the stuff that contains them. that is unbelievable. and it does so as a magnet! i'm a smart girl, but i have no idea how a magnet can see my brain, and in such detail that i can look at the films and see the weird mushy, wormy looking texture and follow my optic nerve from eyeball to occipital lobe. weirder still is that the magnet can see through my neck and shoulders to the cervical spine! and if i were having the thoracic spine scanned, too, the magnet would see past my ribs and lungs and heart to my spinal cord!

all of these mechanical miracles, and yet i have an incurable disease...

the other thing i was thinking about, and this is definitely a result of the ativan and the oxygen, was what words the scans sounded like. in a way, it was like being inside a kraftwerk song--robotic, evenly paced, nerdy, even a little scary. my sister used to do this thing, before she got too teenagery, where she would say the word "girl" over and over into her fist, so that her lips were covered entirely. the result was this weird see-and-say-esque noise that sounded like "doy". i think this was some kind of bizarro thing that girls do at camp late at night in the cabins, high on junk food and independence. but the MRI noises sounded a bit like that. sometimes they sounded bleepy, like an old-school hand-held video game. sometimes they sounded like someone was knocking from inside the machine.

but the words i was imagining, and at times i swear they were actually being spoken to me by the MRI (again, folks, i was under unusual chemical influence) were real words. the MRI was talking to me. now, in my normal and sober state, all i remember is that i was being spoken to. i can only remember one series of words that were said--"this is it this is it this is it". i figured this was what the machine was saying to me as it scanned the part of my brain that is swollen with my MS lesion.

am i losing my mind? the answer could be yes--both literally and figuratively. see earlier post--i don't feel much like myself. and this was 10:something on a friday night and i'm going through this magnetized ridiculousness as, now, a matter of course, a part of my life, this thing that i do.

i got my contrast injection, had about fifteen more minutes of scans, and that was that. i was awakened from my drug-induced near-euphoric slumber by a nurse telling me i did a great job (did a great job? i didn't _do_ anything). it was the equivalent to the house lights coming up after a concert performance--eyes readjusting to the light, stiffness from being still for so long--my philip glassian radiological procedure.

but that's not all, oh no. that's not all. i went to the dressing area to regain my pride and my clothing. and then...

...i swiped a hospital gown. yes, i know--this is wrong. it's stealing and whatnot. i'm not going to try to justify my actions. i stole a hospital gown. but i really liked the print on the material, it gave me some ideas for sewing projects. i mean, i've spent enough time in that hospital already and taking a gown off their hands isn't going to set them back too much. they have about a million of them. besides, i was high from breathing straight oxygen for 45 minutes. it seemed like the best thing to do at the time. your honor, i am guilty. take it up with my insurance company.

not only was i high enough to stuff a gown in my bag, but also i decided that the best way to get home at 11:00 at night would be to walk. i walked the 22 blocks, staggering like a drunk, talking on my cell phone. but i made it home safely, was greeted by the dog and cats. had some oreos for dinner. fell right asleep.

Thursday, June 03, 2004

delayed fallout...

sometimes i swear my brain moves. i can feel this quick, brief, electrical movement, like having a twitchy eyelid. i can usually feel it on the left side of my head, on the top, about three inches ahead and an inch over from where i had the biopsy. i don't know what it means, or if it means anything. i'm sure next i'll be waking up as a giant cockroach. maybe i'm just going nutso.

or maybe these little electrical impulses would be seizures if i weren't on the carbamazepine? ha. i hate the carbamazepine. it has made me an idiot and a clutz and i wake up in the morning with the speed of an iceberg. i always forget to take it on time, too. i take it evenly spaced because i'm constantly remembering about an hour or so after i'm supposed to take it. i guess it all works out somehow.

here's something i think about a lot:

i feel like i've lost my relative sense of time since the seizures. that feeling i had when i woke up and had no idea what day it was hasn't entirely left me. ugh, it was the worst feeling. and its memory is so vivid, unlike most of the events of that day--the nurse, a guy in his late 30s with really short grey hair and grey stubble on his nice, but no-nonsense face. he had a white t-shirt underneath the scrubs with sleeves that were long enough to peek out past the green. he seemed to just appear at my right side and he said, a little sternly because when i regained consciousness i immediately started panicking, "emily, do you know what day it is?" emily, do you know what day it is?

i would never have imagined... i never would have thought i couldn't answer that. it's such a stock are-you-okay-and-competent question and i couldn't answer. i've felt compromised ever since. i doubt my awareness of days and dates. i have to double check that i've written the month and the year properly. god, i hope this is a side effect of the carbamazepine, but i worry that it isn't. i worry that this is what it's like for people with brain diseases, this is what it's like for me.