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.