disability

I got a new abortive migraine med from the doctor- zomig. I haven't tried it yet (since I've been at my grandparents and the medicine is at my house). I decided to check it out and went to the zomig website- clicked on the part for healthcare providers (you get better information that way), and found some Migraine Disability Assessment (MIDAS). Now, I'm pretty sure I got my score correctly- just add up all the number answers from questions 1-5, right?- so, according to this system, I am severely disabled by my migraines. Let's put this in perspective: according to the MIDAS, one is classified as being severely disabled by migraines if one gets a score of 21 or above. My score, on the somewhat conservative side even, was about 130.
Is there an über severely disabled?

And really, do I actually fit in that category? I can still function, for the most part- sure, I miss a lot of activities and junk, but there are people with severe disabilities that do a lot more than I do. Therefore, I don't think the level of disability can be measured by how much it causes one to miss out on activities, or any of the other things that MIDAS, in just five questions, measures.

Sure, it's quite nice- validating, I suppose, to have some measurement created by some scientist/doctor person (read:pharmaceutical company) which says my migraines really do interfere with life a good deal (I'm off the charts, even. ooh-hoo.). It's nice to know I can pull out things such as MIDAS and doctors' notes that say I'm "severely disabled" or have "severe migraines". It's nice to have those things to back me up when others, or even myself, doubt the level that migraines and such junk interfere with my life.

But do I truly identify myself as being severely disabled?

Of course not! I have met severely disabled people and it would seem, to me, an affront to them to put myself in the same class as them. It would be unseemly, presumptious, arrogant, and self-centered of me to think that my migraines are as debilitating as severe disabilities such as low-end-spectrum autism, cerebral palsy, down's, cancer, renal failure, heart disease, epilepsy, the worser-end mental disorders, crohn's, and so on. I would never presume myself to be in the same situation as people suffering from these diseases. All I can reasonably say is that I have enough experience with illness to have an at-least-somewhat-solid glimpse into what severe disability is like.

Pennsylvania

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These are the PA colleges (and institutes) that I'm looking into. Cool stuff.

like two little old ladies

"Are ya hungry?"
"No."
"Oh well, you're not gonna get dinner, d'you want us to bring you back a burger?"
"No thanks. I'm fine."
"Y'sure?"
"Yeah."
"Well, okay... In case you get hungry, there's some Kibbles in the dog bowl, and treats in that basket over there," he points to the basket filled with pupperoni and pigs' ears. "And there's mashed potatoes in the fridge. They're a week old, but still good." Of course he would offer up the mashed potatoes- he's had them four times this week and is thoroughly sick of them!
"OK, I'll keep that in mind."
Enters Grandma.
"Are you cold?"
"No, I'm fine."
"Well, sometimes the house doesn't heat up very well. Especially at night, we always turn the fireplace on then."
"Grandma," Grandpa interrupts, "She's not cold."
"Well she might be." Granma turns to me, "Do you want me to turn the fireplace on?"
"I'm alright," I respond, smiling.
"Well, I'll go turn it on..."
"She's not cold, Sonya," Grandpa interjects.
"She might get cold."
"She's wearing a short-sleeved shirt and said she's not." He turns to me and says knowingly, "You don't get to decide when you get cold. Grandma decides."
Grandma turns back to me, "Do you want me to turn it on?"
I grin and tell her the truth, again- "I don't care."
"Just leave it off, Sonya."
"Well... alright," she concedes. Grandma walks to the pantry. "Are you hungry?" And she begins to list off the things I could eat.
"I'm fine. I'll find something. I'm really not very hungry."
"Well, this," She pulls out some concoction in a bag, "is really easy to cook, so you can have that if you get hungry."
I start laughing.
"She's not hungry, Sonya. Just leave her alone and let's go."
"Alright, Roger," she says and rolls her eyes. Before she leaves the room, a red stick pops in front of my face. "Do you like twizzlers?" I think, kind of, but not really, but don't say anything and opt for just shrugging while I laugh some more.
"She doesn't want it, Grandma. Leave the girl alone."
"Oh, alright." She rolls her eyes at Grandpa again, but the red thing disappears. "Well, I'm going to have one."
"Alright. Let's go." He turns to me. "Don't break the laptop. You break it you buy it. And if I find any viruses or porn on there, you're in trouble. Unless it's good porn, then I'll just copy it over to my favorites."
Grandma rolls her eyes again, but manages to give him a good deal of patience. "Come on, Roger, we've got to go."
It takes me a few minutes to stop laughing. I can't help but think that they are just like two little old ladies.

I love my grandparents.

Who'da thunk it?

Is it possible that, when it comes to relationships with guys, I err strongly on the side of caution? I have always told myself that I would be really careful when I started to date someone. I wouldn't get seriously involved in a really short amount of time. I wouldn't commit myself to someone without careful consideration, discussion, prayer, and most likely even fasting. I would be sure to know a guy really well and that he really was "Mr. Right" before marrying him. All of this because of how prevalant divorce is in the world, and especially because of how prevalant it is in my family.
I guess what I need to recognize is that not everyone thinks like that. And they may not even be wrong.

How to recognize love in my world/What love does to me

Love can do funny things to us.
Love causes me to think; but distracts me terribly.
Love causes me to focus; but can also make me forget.
Love can make me feel almost healthy; or it can make me throw up.
Love can make me laugh; and then it can make me weep.
Love causes me to learn- and wish I never had.
Love can make me feel like shrinking, but still cause me to grow.
Love makes me want to dance, but then it makes me want to stay home.
Love can make me stay up late, even though it makes me tired.
Love can be there when I do something for you, and even when I don't.
Love is when, after forgetting, you suddenly cross my mind.
Love is the reason I give you a hug and mean it; even while I'm mad at you.
Love is why I change for you, but try to always be the same.
Love is like the sunshine that can make me love the rain.
Love is everywhere; but still so hard to find.
Love makes me perfect- while it reminds me that I'm not.

All of the above

from: 23 Dec. 2007 Sunday~ late @ night

What is this funny feeling in my chest? It feels like anxiety? OK, but why?
Well, there could be several reasons, I suppose. Like- it's late. I'm getting tired. I could be getting a migraine. Christmas Eve is tomorrow, which means the start of several crrrazy days in a row. I miss a few friends of mine. I am sick and tired of being sick and tired. Oh, it could be the nausea. And my youngest sister was driving me nuts not too long ago. Or maybe I'm just restless.
Erm... All of the above?

Christmas
Hmm... Well, first thought: It's not that I don't like Christmas. I really quite love it. "It's the most wonderful time of the year." But when it comes to the actual Day and days surrounding, it's somewhat stressful. This, I think, is largely due to the many demands made on me by family. That's not the best way to phrase it... Better would be- the familial obligations demanding appeasement. That sounds more close to how I mean it. I don't know what a non-busy Christmas is like. I kind of envy my friend who stays home and just hangs with her family on Christmas Eve and Day. Or even just the people who go to visit a grandparent on Christmas Eve or Day and don't have much else going on.
I love being with my family-- all of them, but having to go here and there and spend a certain amount of time with people (partly 'cuz that's the tradition, and partly 'cuz I don't want to hurt anyone's feelings)... that's rough. It doesn't make for a very relaxing Christmas. I'm used to it- that's just how my Christmases go. This year, however, I think I'm more sensitive to it. I think it's just a combination of "growing up" and my being sick.
health (and christmas/business)
It's quite easy to blame a lot of the unease on my health: I've been worried enough about wearing myself down as it and I can count on feeling the effects of a single "full" day on my body for at least a day or two afterwards-- these two things make me concerned about going going going Today, Monday, Tuesday, Wednesday, and Thursday. (Thus why I will probably seek respite for awhile at a prime location.) There will be down time- as in sitting down, but even that requires interacting with people and at least some mental acuity- all of which can be quite tiring, especially when combined with noise and a lack of chances to nap. There will also be the worrying- will I get a migraine? What possible triggers for a migraine are around? Which ones can I avoid? Which ones can I not avoid? How nauseous am I? How much is wise to eat? What is wise to eat? Should I eat? What's the best way to succinctly explain my nutrition drink while also avoiding the attention of "poor you"? How should I handle myself if I need to go vomit? How do I do it the most inconspicously? How do I avoid lots of attention over it? What happens if I get a migraine- do I try and leave the whole group, or tough it out? Should I take some ketorolac/excedrin/acetaminophen/dr. pepper to try and hold it off until I have the time and oppurtunity to deal with it-- and the rebound headache that would most likely ensue? That's really not the best thing for me in the long run- especially since I did such for the ACT (which resulted in the expected consequences) and would be doing such for more than just one day. It's quite a good solution-- short term; but long term it's just digging myself more into a hole of difficulty-ness to treat my migraines. It's a very tricky and annoying balancing act.
The smartest thing to do would probably be to avoid NSAIDs and caffeine. Limit my food indulgences- keeping nutrition drinks as my staple. Giving the Relpax another try. Perhaps finding some Sprite. Remembering to read my scriptures (something I haven't been doing well on) and say my prayers. Maybe give the Fenergen another try. And set aside time to rest- especially when my body is telling me it needs to. This would mean going into a seperate room for half an hour or so just for quiet, dark, and alone time- even when at family gatherings and whatnot. Trying to not operate on too wacky of a sleep schedule. And allowing myself time to talk to my Dear People who help when I don't feel well.
This really should be my day-to-day operating rules. (replacing relpax and fenergan for whatever the doctor is having me try as time and the process of elimination progress.) I think, then, that I will change the color or something of the above just to emphasize its importance then. OK well then, that will be my plan. Perhaps I should write it down and stick in my purse/wallet/scrips or something so that I remember to follow it...
Perhaps that will help me to lessen the stress of Christmas and enjoy it more. Indeed, I think it will-- I feel much better now having this course of action set.

It makes me think of Bella from Twilight, who, when in a difficult situation, suffers most while trying to decide what course of action to pursue, but once that course of action is decided- she sticks to it, doesn't deviate, and the u"ber-suffering part of the situation is past. I think I am becoming more and more like that. I like it.

Hmm... I feel better. Anxiety decently abated. It seems that Christmas+stress+health is what was bothering me most.


some thoughts on love
Elder Groberg gave a talk in 2004 (I believe that's the right year and 'twas Oct) and he talked about God's love and how great it is when we experience something reflective of that love here on Earth. Such love is what we are all born with an innate longing for. Finding it fills us and brings a sense of joy, purpose, and completeness that cannot be otherwise found. Our Father in Heaven and our Saviour- Their love is, of course, the greatest. Love that reflects that, though, is still very great, powerful, and beautiful.
I would like to note that there are many friends for whom I feel an affinity towards. There is an easy love which, with work, time and diligence, could bloom into something quite lovely. This easy love seems reflective of our Father's love. It is, I think, how He wants us to feel and care for the rest of His children. It is what promotes that feeling of unity and well-being.
What a wonderful thing is Love!

Okay, it's late/early and I should do some dishes, laundry, and get to sleep. I will post (parts) of this onto blogger later- when the parental control isn't blocking internet access (heh).
Merry Christmas... Eve.
And ah!- I love babbling in type! It's so nice to flesh out- at least somewhat- the many ideas that roam around inside my brain! Hrmm... perhaps that's why they say it's good to keep a journal. :-o

sleepless... in seattle?

Okay, so it's really late/early?--early, and, you guessed it, I woke up and can't sleep! So... some unstractured babbling is in order, just for the heck of it. (that is my warning to anyone to whom whether or not the babbling is structured or not matters)
I like sleeping- I wish my schedule weren't getting all wonky. I hope it doesn't mess up Christmas for me too much- I mean, as in spending time with my family and friends and whatnot.
Ha.... a friend of mine made me laugh today when Friend called to ask about Mutual Buddy. It's kinda weird that I know Mutual Buddy better than Friend does, tho as to why that is weird I'm sorry, but I won't say.
My step-dad's watch alarm just went off 'cuz it's hit the hour.
I fixed my alarm clock back to the normal time (I messed it up when I was setting the alarm the other day- suffice it to say that the alarm didn't do me any good in that instance).

I'm wondering at my mental state this past week. The week, overall, is somewhat of a big Blur. Maybe it's just because I have been home almost the entire time with nothing terribly eventful occurring... or maybe it's because of near back-to-back migraines which leave me in a mental Fog.
Honestly, I'm prone to think it's a little of both.
The first half or so of the week I could really quite easily tell that my mental condition was, well, not quite up to par. That was fairly interesting. It reminded me somewhat of when I was on the Topadope- thinking not so clear and whatnot. I also didn't talk much many of the days. That was either due to me being home alone, or with migraine. A few times I babbled pretty normally, but that was mostly on the phone- which phoning was usually made when I had to do dishes or something and needed someone to talk to in order to distract me enough from my body so I could perform said chore.
My family isn't so good at that task. Brother will sometimes babble well for me, Sister- when not otherwise occupied- is actually rather good at it, Second Sister.... erm, I don't ask her, Stepdad ... haven't asked him either, Mom is usually too tired.... So I often resort to friends for said task. I'm grateful for their willingness to oblige.
I went shopping with a Friend yesterday and that was interesting- thinking/conversationing-wise- because she would be talking about something and I'd find that any reply I could think of really didn't add or mean anything, so I was just silent and listened and people-watched as we walked along. This may be somewhat strange for me- to sort of filter what I say like that, I suppose, and/or to have nothing to say (in response)- and so Friend at some point stopped and looked at me. "Are you okay" Erm, yeah, why? "'cuz you haven't been saying anything." Oh. Whoops. I guess I need to work more on my 'uhms' and 'yeahs'- I think I'm starting to loose them. And then later, "Are you alright?" ....Yeah, why? "You look sad." Oh, really? Huh that's funny....
The last was actually pretty interesting to me. It's happened a few times to me, where someone looks at me and says "you look (insert emotion here)" and I say, really? 'Cuz that's not how I feel- not in the slightest. Weird. Perhaps when I'm thinking about stuff and being more internal about it whatever I'm thinking or feeling doesn't make it out to my face. I think that might be it- the internal part of it all.

SlEeP lIsT
Okay, for fun, I'll give a little list of things that my mind often wanders towards while I try to go to sleep:
-this or this
-these
-this/this, these, and wishing for one of these that worked
-impendingness of this, unless it's already come, then I would be thinking about about one or more interesting things.
-my people
-things relating to this

OK, I'll go pick one or more of those now.
Good night/morning.

Note: Sorry if the grammar, punctuation, wording, etc. are a bit unorthodox/strange/ambiguous-- it's late/early and my thought-to-normal speech translator isn't at its normal capacity. Of course, as you've noticed above, I'm sure, said translator hasn't been functioning at its best most of the week. :)

grrr aargh

I feel somewhat zombie-esque. This comes to mind, tho I think that it may not be an accurate depiction of my current state. For one thing, I don't feel like putting forth the effort to make that zombie noise. Does that mean that I am beyond zombie?
Interesting thought.
But really. I have a few times in the past couple of days had something said to me that I couldn't even formulate a response to. I thought about it, and thought, and tried to figure out what I thought, but eventually just decided to stop trying and not respond. What was almost equally as interesting was that whoever said it to me didn't even press much for a response, and if they did- and i continued not to respond, they just let me alone.
Maybe it's some weird migraine-brain thing.

wuss-ification

I think we're all becoming wusses.
I was reading this and its accompanying comments, and it reminded me of my youngest sister who has been known to moan, groan, holler, and drop to floor... when she stubs her toe. (Honest. And I'm only slightly exaggerating.) She does have the excuse of being still in the "single digits", but still- was I that much of a wimp at that age? I'd like to hope not. I don't think so. I know for certain of other kids that weren't such wimps at that age.
I fell off my bike at age 8 or so onto a gravel hill once. I cried, but tried not to too loud- I didn't want anyone aside from my cousin to notice. I tried to hide the bruise on my knee from my mom until it went away (I don't know why)- and it was a decent sized bruise too. I think my cousin might have gone and gotten me some ice for it. But not too long after having fallen, I got back up and (a bit stiffly) resumed riding around on my bike.
If the same thing happened to my youngest sister, what would her reaction be? Knowing her (not to condemn her or anything, I'm just giving my honest opinion in a matter-of-fact sort of way) she would almost certainly cry, clutch her knee, and possibly lie on the ground making sounds of pain for a few moments, and perhaps repeat again when she *tried* to get get up and walk.
Maybe she just has a low pain tolerance.
Maybe our society contributes to that low pain tolerance.
Headache? --get a tylenol.
Cold? --nyquil
Tired? --caffeine
Can't sleep? --sleep aide
sneezing out the whazoo? --benadryl
etc etc
Not to condemn these practices either, I have been guilty of each (well, okay, not the "can't sleep" one, but I have been known to be more religious about taking one of my meds because it has the side effect of drowsiness). I will go so far as to say that I have been guilty of these on a consistant and reliable basis. And I see nothing wrong with it.
If your head hurts, and you can take away, or at least abate, the pain, then why suffer?
Now, I do try very hard to not be a wimp about pain-- it has to be really bad before the temptation to cry and curse becomes very real indeed. I try to take a step back and look at my pain objectively.
OK, I have a headache. How bad is it? Well, the fact that it falls under the category of "existent" as opposed to "nonexistent" really doesn't mean anything to me anymore- it used to, back in the days when I could take two tylenol for it and 20-30 min. later forget about the darn thing. Now I can't even do that except a couple times a week, and if I do, no toradol/excedrin/other pain killer for me for another week. So, I have become selective about which headaches to "treat". Basically it goes like this- is this "just" a headache (with varying level of pain), or is it a possibly-pre-migraine-headache. The first warrants ignoring. The second, toradol or whatever triptan my neuro. has me trying at the time + other stave-off-migraine activities as warranted considering the loominess of possible impending migraine.
What I mean to say is- despite my "drugs are good for you" and "why suffer unnecessarily" philosophies, I don't think I have a low pain tolerance... At the very least, I'm pretty sure I'm not a wuss about it. (I think back to judo... asthma's another thing entirely, dear, and I may very well be a wuss about running+ my exercise induced asthma. I admit to such a possibility.) I may not be like that "90-something y/o LOL" who is tough as nails when it comes to pain- and I must say I admire the heck out of her- if offered pain meds by a physician (who knows me and my "history" as it were), I will most likely accept.
Oh, but there was that one time Dr. PCP offered a prescription for narcotics- and I say nay. I just went w/ mucho excedrin+acetaminophen w/ caffiene as needed daily (and monitored my doses pretty carefully). I didn't want to take pain meds that would make me sleepy. I will say, tho, that I have since had a few moments when I wished I had accepted that narcotics-- mostly when migraine was really, really bad and I couldn't sleep.
But I digress...
my point is (do I actually have a point, or just a few thoughts centered around something point-like) that I think today's kids are at risk of becoming wusses.
Kids should be allowed to fall down and get scraped up. Experience some pain and discomfort. It's good for them! They learn to tolerate the pain and it will come in handy when it really is something bad.
Those are my thoughts.
Sorry if they're a bit rambling and unfocused (as in- more so than normal lol). It's late, what can I say? :)

impact

I just read my Roo essay for the first time since finishing it.
There's a very real possibility that I might cry.
I am usually able to be at the very least, somewhat, objective about my essays. Step back and view them as someone who doesn't know me might view them.
I really couldn't do that with this essay. I could occasionally step back, but it wouldn't last very long. I was caught up in memories... thinking of what other details I could have included- wanted to include. What I could explain better. What wasn't explained perfectly, but I couldn't have done a better job at and still held true to myself.
I think that writing such as this is a whole other monster from "normal" essay writing. It is not just about relaying the needed information, nor is it about relaying that information well and interestingly. It becomes more than that. It transforms and its sole purpose comes to be serving the subject.
My English book on writing says that good writing serves for the writing, not for the subject, and in this way, the writing comes to best serve the subject in a way that could not otherwise occur if one did not step back and think solely on the writing.
If I worked more on my essay, I think I could find myself able to do that. However, I'm sure that I would want to. The essay would still continue to be- at its core- about the subject, and not about the writing.
The two are inextricably combined.

What an interesting experience it has been writing this essay! I think it has changed me. It certainly affected me in many, many ways while I was writing it. My thoughts were constantly on it. The disorders. Roo. My memories. My thoughts about each. Hypotheses. It seemed to permeate my mind throughout the entire day- everything reminding more strongly of Roo than it had before I began (for the second time) the intense work on my essay. I had two labels for my activities- working on my Essay, and not working on my Essay. (This is possibly a bit of an exaggeration, but I state it as such because doing so best gets my idea across.)
What am I going to do now?
Decompress, I suppose. Let all of the emotional intensity involved with that writing subside; abate; become somewhat more dull.
What am I to do, now that I no longer have that looming over me?
Return to normal, I suppose. Well, perhaps not it won't quite be a return, because I have been changed just a little bit.
Interesting what writing can do, isn't it?

falling asleep

Thank you.
I love you.
Hope you slept well.
Have a nice day.
~Cass

Sometimes I can't sleep. It happens more often than I'd like to admit. Some days I spend the majority of my day putting around, wishing I was sleeping. Then, when sleep-time rolls around, I find my body feeling too weird to sleep. I may be completely "out of it" mentally, and still unable to fall asleep.
This is when late night telephone calls are helpful.
And this is another moment when I find myself missing Roo. She knows what it's like- and more. And she was up at odd hours of the night so I could call her whenever and it would be alright to talk to her. The more time passes since she passed, the more I realize what she was to me. And what I'm missing from her now.
So I find myself very grateful for those friends of mine who step up and are willing to take on some of the roles that she was to me- even if they don't realize that's what they're doing.
I look at myself and how I miss those roles, and I see myself wandering around, trying to find someone or something to fill that spot- nay, those spots- which was before filled by Roo.
Perhaps that's where the blog-reading came from. I can't pick Roo's brain about health problems, nor for a cornucopia of medical information, insight, thoughts, etc. Maybe I use the blog reading to fill in for that.
Or maybe it's just a new hobby. I don't know.
Maybe that's why I found myself calling a certain friend when I can't sleep. I did it one day last week during the afternoon, and I did it last night around the time that most normal people are sleeping.
I started to ask what my friend was doing (I wanted to make sure I hadn't interrupted anything) and Friend reminded me that I was in no place to be asking such questions since I was the one who had called at the funny hour.
Oh right. Well, that makes sense.
I feel like crap, I said. That didn't really describe how I felt in all minutae (I'd felt worse- as in, more pain- before; this seemed to be more of a different brand of feelings of unwell-ness), but it did get the very general, unspecific idea across.
And I was hoping you wouldn't mind just talking to, or at, me. Really. Just talk for awhile, please. Even if I don't follow what you're saying, sometimes just having someone there for me- in whatever way they fill that capacity- is enough to distract me.
So, my friend talked. Friend was a bit surprised at discovering that I really, in all actuality, didn't intend to do much talking myself, but being the good friend, didn't mind.
And curses if Friend didn't eventually get me to talk! No matter that I was totally out of it (my mental state was somewhat reminiscent of how I was after being drugged up for endo/colonoscopy)- I ended up speaking whole paragraphs at a time! (or at least it felt like such)
Friend is able to get my mind off me and how sick I feel, or how confused I am at my body. Friend is able to get me to think of other things. Friend soothes me so I can stop fretting, and fall asleep.
And, curses, but my friend fell asleep on the phone. That was my job!
So just in case Friend was awake enough to hear me, I said goodnight.
I love you. alot. ... Very much so.
Thank you. Sleep well. 'night.

I hung up.
And fell asleep.

she gets it

Part two of the gratitude dose for today--

I had to cancel. I felt awful- not just because of my body, but also because of my guilt. It was last minute. I'm the president for heaven's sake! My friend says, "how can we have a presidency meeting without the president." I tell her I don't (did I sound distraught?). Figure it out. I call the lady in charge (the president's president, if you will) and apologize.
"I'm not gonna make it," I confess. I can tell I sound perfectly normal. "I'm just..." I purse my lips togethor and try not to cry, "really not feeling well today." My voice cracked. A chink in my facade. I expect her to sound disappointed; maybe even doubtful.
She doesn't.
"Oh, okay," she sounds unaffected- still perky, just with a bit of sympathy. "I'm so sorry to hear that. I hope you feel better!" Holy cow- she really, really means it- not just in the typical convention of speech way, but in the sincere, genuine, and warm sense. Wow. I may just cry now. She continues, "Thank you so much for organizing it [the meeting]."
Thank you? I called to cancel on her, feeling incredibly guilty and like I'm letting everyone down. And she tells me thank you. She tells me that she appreciates my efforts.
That is so wonderful. She may not understand what's wrong with me- I haven't talked to her in much detail about any of it. Nonetheless, she says what I so need to hear (and often don't know I need so badly). She says it with feeling- I can't disbelieve her. She offers support-- "If you ever need to get out of the house..." I could go on about that, in itself! (I may just do so later.) She thanks me. And means it. Allowing me to feel like I didn't completely let everyone down. Knowing that she doesn't think that helps a lot.
That's how it's done. Understanding at its finest.
Thank you, to you too.

distraction

Today's gratitude dose (aka- cool things I wouldn't experience if I weren't sick)--

Awful headache. Nausea is taking over. I'm huddled in two blankets on the couch. Head halfway under a pillow- maybe that will keep the light out. Knees scrunched up to my chest- for some reason I have this urge to tense up and grasp things when I'm feeling especially not good. Breathing a bit heavy and shallow. Muscles are sore- why?- I haven't excercised recently. (It couldn't just be being out of the house for a few hours that wears me down, could it??) All I want to do is loose myself, my body, my mind, in sleep. I breath as deeply as I can. I pretend I can feel warmth from the lights on the Christmas tree spreading over me. I remind my body to relax.
But sleep won't come.
That sucks.
At the risk of making my headache worse, I decide to call my friend. I hope he'll be able to talk for a little bit. I'm not feeling particularly communicative, but I hope he'll forgive that and just talk to me. I don't care what about. Just as long as it distracts me enough that I can fall asleep when I get off the phone. I reach out and drag the phone inside my dark and secluded blanket cave. I talk some. He talks some. I huddle up like a turtle inside my shell. It gets worse for a few minutes and I just concentrate on breathing and enduring the pain in my head. He hums quietly to himself, distracted by something, and I listen- concentrating intently on the different sounds. Following along and finding myself relaxing. He talks some. I can breath a bit easier. My headache isn't so much to bear. He has to go. I toss the phone out my shell. Snuggle in tight. Position my head under my pillow. Then I breath, relax, and fall asleep.
Thank you for distracting me.

scary and annoying- please understand

Being sick is frustrating. I woke up at 5:20 only to push the snooze button again. I pushed it a few times and finally texted my friend asking if she could give me a ride after seminary to the college. I realized I wouldn't be able to make it to my 6:15 church class, but knew I still had to go to the college (dang them). I found myself praying- I had no idea how I would get out of bed. I finally found myself sitting upright. Can I say- postural changes have recently become more of a problem for me? I sit up from laying down- wait a moment for head to stop hurting and my sight to get clear again. Stand up from sitting- wait a moment; again. Stand up from laying?- don't even think about it. Stand up quick and run to grab the phone- hey! come back vision! come back!
I don't mean to be complaining here, and I'm aware that I am somewhat. Normally, however, I keep my complaining to myself (or at least try to). In this instance, I figured I'd indulge a bit. You see, I'm bothered by how my body is doing (or not doing, for that matter) and kind of scared about it. There. That's out.
I'm scared.
And it feels danged good to admit it.
Ah, I can breath now. Lovely.
The neurologist said last Friday that she thinks my nausea/vomiting problem is seperate from my migraines. Obviously, the migraines and nausea feed each other- having one problem certainly doesn't help another problem- exacerbates it, actually. Okay, so I guess that's alright- I have migraines. Severe, chronic, hard-to-treat migraines. And my nausea problem (aka stomach problem) is something aside from that.
I find it hard to buy. Considering that the nausea started only a couple months after the migraines did... but then, it does make sense. I guess the scared part of me just sits there and thinks that they must be a part some bigger, scarier thing that I can't even concieve of. Big scary monster in the middle of the room; and we're all blind.
Nay, that's not really the case, tho. Well, perhaps it may be- but the monster surely isn't that scary.
Maybe the migraines and nausea are related- we'll let the GI doctor worry about that. The neuro's job is to worry about my migraines. There's something to figure out with my stomach nonetheless, and maybe it is related to my migraines. Maybe it isn't. Does it matter?
Not really. What really matters is just figuring it out. I will do the best I can, trust that the doctor is doing so, and leave the rest to God.
At the risk of abandoning the peace that previous statement gives, I continue on to my next concern...
Illness getting in the way of life. It sucks. I feel bad enough when I have to cancel something, or when I miss out on something- I have this terrible feeling of guilt and anxiety and sometimes it even makes my nausea and headache worse! (I am not going to deny that stress affects my stomach and head- but I will say that it isn't the cause of my problems... more on that another time.) The point being- I don't want to cancel things. I don't want to miss out on things. I don't even want to skip cleaning (despite its undesirableness). I don't want to have to put assignments aside and turn them in late. I don't want my health problems to get in the way of anything.
The frustrating part is when people don't understand that I'm not doing or getting things done because I'm sick. When after explaining what's going on and why I can't ______ (fill in the blank), they look at me with that doubt and just say, hesitantly, "well... okay" ("...but you don't look sick...") as if they're trying to convince a child that they believe the teacher really didn't assign any homework- even though they're pretty sure the teacher actually did.
So, for anyone who doesn't understand, let me clarify:
I'm sick. That's why I don't get things done. That's why I can't get them done sometimes. You may think I'm rationalizing (sometimes I think I'm rationalizing!), but I'll tell you that my health problems are very real and very annoying. I'm doing all I can to get healthy and to, in the meantime, maintain any health that I happen to be in possession of. That's why I'll say "I can't do this"- maybe I physically am capable of doing it, but sometimes (much much more often than I'd prefer) I have to step back and put taking care of my body as top priority. That sometimes means putting aside things that are really really important. That beats me up. I hate it. I wish it weren't so. But such is life; -at least for me.

But- I have friends. And I have my faith. I feel sorry for those who lack either and especially for those who lack both. I have people to talk to. I have people who will listen and understand- sympathize; some even to empathize. I have a computer to babble out all the stuff in my head that I would stumble to say out loud. I have a telephone. I have doctors. Church leaders. I have my God- my Heavenly Father- who listens to me when I pray. Who watches me and watches out for me. Who answers my prayers- I know this to be true. (What's that song from the Children's Hymnbook?- "He hears and answers me when I pray in faith.") I have a gospel perspective on trials that allows me to see the silver lining in very un-fun situations. I have a family that loves me and makes sacrifices for me. O wonderful blessings! My health problems are something that can be diagnosed and dealt with. My situation will change- in what way, I don't know. I have a pretty darn good grasp on my mental health (if I do say so myself), and am able to find peace when I feel hopeless. I am able to love people and to be loved. Isn't life wonderful?

So, to any of you who don't understand what it's like to have being sick as your default, please cut me some slack. I am doing all I can. I would love to explain it to you if you asked. Just please try to understand and don't label me as lacking, lazy, unmotivated, etc. because of something I can't control.
And I'll try to remember to not get to offended or upset when you aren't very understanding. I'll try to remember to smile, shake my head, and let it go.
Besides- getting upset about it doesn't help my health.

friendship skills up for review

I'm starting to realize...

That I have a tendency, or weakness, rather, for trying to teach and change people, when what I should be concerning myself with the most is loving them.
There's a great power in loving someone. Love has the ability to change and teach. When we are loved, we are more open to being taught and sculpted. And we do it with less push and force, and more of our own free will. That is the most effective way to learn and grow.
To anyone whom I have ever lectured, pushed, prodded, whatever... I'm sorry. I may be right (obviously I think so), but I am not being the best friend I could be. From now on I'm going to try and have my focus to be to love and to listen. I may still have things I want to tell- to impart, teach... I will most definately still have the urge to try and change you- not because I don't love you as you are, but because I want to see you grow, be happy, succesful, wise, peaceful. But don't worry- I won't indulge in this urge too often any more. I'll remember to focus on my job as a friend-- my responsibility is not to teach or shape, but to love and listen, and trust that doing so will help you to learn and grow on your own.

I would LOVE that -- moments to treasure

Things people have done that I'm grateful for (that I wouldn't have had the opportunity to experience if it weren't for being sick)~


After a hard week physically and emotionally, I needed to get away from home. I needed to be somewhere and not worry. Somewhere somewhat withdrawn from my everyday. Comfortable and relaxing. Where I know what to expect and can completely trust in the actions of those around me. I thought of my Grandma B. Her home is so peaceful. She is peaceful. I have many people who love me, but not everyone reacts or behaves around me in a way that induces me to relaxe and not worry about what or how I'm going to say something. The closest of my best friends are this way. It's just hard to stay anxious around them. It's hard to be anything but myself around them. My grandma is one of these people. For that in itself I am entirely grateful.
I remember that Friday morning. I was exhausted. I had been sick all week. It seemed as if none of my food liked me. Life was complicated and difficult. I was trying my hardest to keep my perspective. I was fighting to feel peaceful. Or at least, to not fall into some black hole surely looming nearby. I was wearing down- my body felt drained, as if I were literally missing some substance inside. My emotional reserves were diminishing and thusly my ability to cope well with illness was compromised. I had a feeling that if I didn't do something to take care of myself, it would only get worse and put me even more out of commission than I already was.
Such was my state of mind when I started to call my grandmother and ask- last minute- if I could come up and stay with her for the weekend. I knew that she would say yes, no matter what inconvenience it might be to her. (Another wonderful trait so prevalent in my family.) I hoped it wouldn't cause her too much stress and worried about that a little- it would mean an hour of driving to come get me, and an hour back. And then again at the end of the weekend. It would take time out of her day... etc. etc.
I called her up and chatted with her. She asked me how I was and I struggled not to cry (I don't recall if I succeeded or not) as I explained that I just felt run down. I then asked her if I could possibly come up for the weekend last minute. As I predicted, she said yes. But she said so in the most genuine, warm, and loving way possibly. There was no hint of strain, stress, or uncertainty. She simply said-
"I would love that."


One of my best friends hates taking notes. She is forever teasing me at my almost obsessive note taking in classes, as opposed to her lack of doing so. The closest she gets on a regular base is a phrase or two with a bunch of doodles- cows, ducks, indecipherable shapes...- you name it. Talking to her about what I had missed in physics one week (before I dropped the class, of course), I was surprised when she said- "you'd better come back soon. I'm tired of taking notes for you!" I had no idea that she was taking notes for me! She certainly wasn't doing it for herself- she would barely have any notes at all normally. But for me she went out of her way to take notes for me.
She does so much else aside from that. I couldn't even begin to describe it all and how grateful I am to her.


Another friend I talked to on the phone about how I was doing. It was one of those days that I was feeling particularly at risk for isolation. That happens when you're sick a lot. The increase in time that you begin to spend at home sick is directly and inversely proportional to the decrease in time that you spend with your friends and the rest of socialization. Don't get me wrong- I love peace and quiet and having the house to myself for a few hours, but the first time I got sick, I began to loose touch with people. I was home more and more and missing out on more and more activities, and started to get out of touch with everything and everyone. That was awful. It was depressing. Discouraging. And lonely. The afternoon I was talking to this friend was one where I was trying not to fret about the possibility of that happening again. Actually, I over-compliment myself. I wasn't trying not to fret- I was fretting. I was anxious and begin to feel a bit depressed. I will say I was trying to stem the tide of anxiety and whatnot, or at least to deal with it, but it was frightening. I like people. I really find them quite an essential to my existence. (I've no idea how Moroni held up so long... perhaps because writing back then was such an involved task?) As I mentioned, I was put up to the task of relating the level of my well-being. It went something like "not too bad. I've been sick a lot and am starting to get somewhat discourage and afraid of the possibility of being isolated again because of it..." and explained the situation. She said she was sorry. I believe she asked what she could do. I told her that what really meant a lot to me was when people stayed in touch. There was only so much I could do, so much effort I could put in, to keep caught up with everyone. I may not be able to hang out as much or go out and do things, but I appreciate being invited. I appreciate the thought of, "we know you're sick and probably can't come, but we're inviting you because we want to come if you can". I appreciate someone's willingness to just come over to my house and hang out instead of going out because they know that will wear me out less. I appreciate phone calls, messages- no matter the length. Things that say- hey! we miss having you around as much but we're not gonna let you be isolated! (What a wonderful blessing we have in technology! The ability to communicate! I am so grateful for the connections it allows to be sustained, maintained.) I told this friend that if she could try to do that- try to help me keep from being isolated, I would really appreciate it. Looking back, I think I may have felt somewhat desperate. She had a genuine smile in her voice as she said "I'll do that" and I believed her.
Within the next few days, I found myself doing dishes- still feeling quite worn out- when my friend stopped by without warning. (She's one of those people that has a standing invite to our home- come whenever you please. Don't bother to knock.) Hugs. Smiles. How's it going? Teasing with the siblings. So, what's up? "I have to run some errands at the store. Wanna come with?"
Absolutely amazing. Going out of her way to spend time with me- even just on a simple and short shopping trip. Absolutely amazing.
Things like this are a major part of the reason why I'm not worrying about becoming isolated anymore. I'm sure that fear will strike me again- more than once- but now I have evidence to help convince me to "be not afraid".


"If you're not better by the end of the year, I'm gonna fly you down to Mayo Clinic in Arizona and make them get you better myself!"
She'd do it, too.
'Nuff said.


On the way to our local pharmacy, Mom reminded me "we're having a family fast tomorrow, remember?"
"yep."
"grandma s. has your aunts, uncles and cousins all fasting for us to get a new house. and there was something else, too, but i can't remember it..."
pause. "it was me mom."
"oh, right! whoops!"
"i can't believe you forget me! you're own daughter!" (gosh!)
I felt the prayers offered that fast Sunday on my behalf. It made me want to cry. How I love my family!


I walked out of the little bathroom feeling weak, winded, tired, and dismayed. I did, however, feel less nauseous and less pain in my head. Nonetheless, I needed to be out of that noisy, bright room where I was forced to smile and pretend I was doing well. I just couldn't fake it at that moment. I could smile sure enough, and I did as I listened to a friend make small talk. I nodded faintly and walked off to another friend. I knew I had to go outside and get some fresh air- if only I'd remembered my inhaler!- but I didn't want to leave my people completely unaware as to my location. I caught him by himself and he gave me that look that said, you don't look so good, i'm really sorry. I appreciate that look and the sentiments behind it. This friend is especially good at it, too, which makes it all the better. I looked at him for a brief moment, put my hand on his arm (ah! something solid to hold onto!), and said briskly "I need some fresh air. I'm gonna be outside" then let go and walked out without waiting for a response and without looking back to see if he followed me. I had an image in my head of him standing there looking somewhat confused, feeling a bit sorry for me, and then getting distracted by someone else and continuing on. Inside. I hoped that he might follow me. It would be nice. It's always nice when someone goes out of their way for you- especially when you, quite honestly, feel like crap. I sat down on the second to bottom step outside the little building. It had been raining and the steps were wet. I didn't mind. There was still some drizzle as I leaned my head against the cement railing-like thing and gloried in the crisp, fresh, damp night air. I closed my eyes and breathed it in slowly, trying to convince my lungs to work correctly again, my body to stop shaking, the rest of my nausea and headache to go away...
Splash!
What was that? I lifted my head and turned it a little to the left. Nothing noteworthy. Leaned my head again.
Splash! Splash!
What on Earth?! That one very nearly hit me! I turned around this time. That imp of a friend was standing at the top of the stairs behind me with my water bottle in his hands. He pointed it towards me and squeezed. Water flew over my head.
Splash!
I rolled my eyes at him. Smiled, and said "you are not nice!"
"I know." He came down the stairs and sat to my right one step behind me. Gave me that look once more. I leaned my head back as I repositioned myself so he was in view. He talked. I don't remember about what. I sighed internally as I thought about how his shoulder would probably be a lot more comfortable than cold cement.
"You're sitting too far away."
"Yeah... but what?! I'm not above to move and get my bum wet all over again..." more talking. I reacquainted myself with the cement. It wasn't too bad. Not exactly temperpedic, but much better than keep my head up own my own. "... and hmm.... So... I've been eyeing that nice little dry patch yonder by you." I looked around myself. There it was- to my left and a step below, right between me and my cement, shadowed by the bush that kept it dry. That's nice. I thought. You just admire that little dry patch while your bum stays wet. I don't mind nearly as much as you seem to. I'll just close my eyes and zone out again, 'cuz really, it's hard not... And he was up in front of me eyeing said dry patch as he moved to sit on it. Oh! I moved to make room, "hey, your bum's wet enough. stay there". Err, okay. I guess you're skinnier than me so it won't be soo uncomfortable... Once he was seated quite nicely I decided to take advantage of his shoulder. Much better than cement. Comparable to temperpedic. He gave me a hug, and then kept his arm around my shoulder. This is a new... I've never had a guy put his arm around me before... He talked for another 10, 15 minutes or so, keeping his arm there until our people came out and I stood up, a bit embarrassed. It was a gesture that meant a lot to me, boy-girl interactions aside. Leaning on someone with their arm around you is really quite comforting when you don't feel good. I highly recommend it. Take as needed. Large doses are not discouraged.


Our people who came out checked on me and asked if I wanted to leave early. Oh no- I wasn't about to make them all leave early because I didn't feel well! I knew full well when I decided to come that I might end up feeling awful- chances favored that outcome. I considered it, weighed it, and decided to come anyhow. That was my choice. I didn't want to get in their way of having fun because of it. I also didn't want a gaggle of people around me while I sat on the stairs feeling unwell. One or two, okay. More? All the attention is almost embarrassing, at the very least uncomfortable (not that I'm not grateful for the sentiments behind it). I told them all to go back in and have fun and to not worry about me. After a couple more checks that I really would be okay, and a couple more assurances that yes- I'll be fine, this is just something that happens sometimes- they went back inside.
I am grateful for that in itself. I hate it when my being sick affects other people- takes away from them. It's enough for it to do so to me, but when it interferes in others' lives... Nay, I'd rather not have it. I don't want to be the sick girl that burdens everyone and poops the party because she just had to go vomit. If I find myself becoming that person, I'm more likely to just stay home. The fact that these friends helped me to not allow my illness to get in the way of everything- that was wonderful.
Then they came back a bit later. The fact that they decided to leave early was even better. Especially because they let me believe it was due to their tiredness.


Laying down in a pew at the church after the fireside. Another friend came up and asked how I was doing. "Not my best." I think I groaned. He looked sympathetic and put rested his hand on my forehead for a few moments. Then smiled and walked off.


"Are you doing okay?"
I shook my head. I don't even remember if I got out the words "not really" or not. I felt like crying.
An immediate hug. And a place to rest my head for a moment and breath.


Walking into seminary for the first time in a week or more.
"Cassanndre!! You're back!!"
How can I do aught but smile?
Especially when he really means it. With every bit of the fervor with which it was spoken.


I'm laying bed reading my book. The lamp is on- its light is much softer than the ones in the ceiling. The blinds are still layered over my window from earlier that day- the sun was too bright. My parents have been home for just a little bit. I'm staying here in order to avoid the noise on the other side of my walls.
knock knock
"yeah?"
Mom opens the door. "Are you doing okay? Any better?"
I give her the update. A bit, yes. Better than yesterday.
She chats with me for a moment. I ask her how her day's been.
She rolls her eyes and shrugs, "long". A big sigh.
Then she leaves, closing the door softly behind me.
I realize that she didn't have anything to tell me. She didn't have anything she needed me to tell her. Coming to my door was not by any stretch necessary.
Thank you for checking on me, Mom.


Having complete my normal business and washed my hands, I exit the bathroom. My youngest sister stops and looks up at me. She fidgets a slight bit, then asks quite nonchalantly, "throw up again?"
"No, silly." I roll my eyes. Just because I was in the bathroom doesn't mean I threw up. I remind her of the fact.
And then I wonder- is she concerned for me, or for the hygiene of the communal bathroom?
A little of both I think.
I appreciate the concern.
And I know how to clean up after myself, thank you very much.


Migraine. Ow. Churning stomach. Impending trip to the bathroom. Ich. My poor lunch. Drained. I think I'll just stay here. Forehead tucked into thighs. Darker. Much better. Arms wrapped around head. Quieter. Good. Body tense. Am I preparing for battle? No. Just don't feel good.
And I have things to do. Like go to my room. It will be darker and quieter. I think I'll stay here just a bit longer. I should take my medicine. Don't wanna get up yet. Would it stay down anyhow? I'll stay on the couch for now, thank you. Dishes. Dang. I really shouldn't put that off.
A gentle voice. "Cassanndre, do you want me to do dishes for you?"
Serious? I mean,- really? Goodness, do I ever?
Groan. "Yes, please."
God bless you.


Dark. Quiet. Warm. Snug. Wonderful.
My head houses an insane drumline.
And then some.

knock knock
"Go away!!"
Wow. Moody. Not normal. Not me.
Open that door and I'll snap you in half.

knock knock
"Leave me alone!"
Wow. I hate yelling. It hurts.
Ringing. Stupid ears.
Pounding.
And then some.

But I have to get up. Get my sister. Do the litter boxes.
I'm going to hurl. I'm positive.

knock knock!
This time I'm knocking.
Ow.
"Get outta bed! Now!"
Wow. I'm not very nice.
I should care.
I'll do it later.
Grumbles. Sister finally comes.
She's not happy with me.
"I need you to help right now."
Head. Ow. Stomach. Eee.
Breathing. Focus.
Shaking. Focus.
Just for a few minutes.
Then be done.
And break down.
Until then
I don't talk
except to snap.

Later...
Chores are done.
Head, stomach,
slightly more cooperative.
Temper back to normal.
I apologize.
I was rude.
In pain, yes.
Not a good excuse.
I'll suck it up-
Be nice next time.

Easy forgiveness.
No resentment.
Wow.
You're nice.
I wasn't.
Thank you for not holding it against me.

stand by for part 2

thoughts for today

[ i wrote this in an email to me mum, but thought i'd share it here, just 'cuz these are my thoughts for the day ]

and oy vey... harrison called me this morning and asked if i could get my flute pieces to the school because he found a flute player to cover for me at the concert. i felt like crying. marianne's gonna pick up the music from me on her way home from school. it sucks. i've worked so hard and beethoven's 5th! and i really really enjoy playing it!! it's frustrating. but i know that's what should happen 'cuz i haven't been able to practice as much as i've needed to... but oh, i guess it's just dissapointing because orchestra was one thing that i thought my being sick wouldn't affect so much. i mean, missing days yes, but i've kind of always relied on my flute abilities to, er, sustain me despite that. but... performances? missing out on those?? the last one i didn't play in because i had to leave stage to go throw up... this one, because i just haven't been around, may not be ready... harrison did say he was sorry to hear i wasn't doing well. and i know he meant it. thank goodness for that. it's just hard, i guess, to not feel like my being sick is taking over.
i was talking to eddy about that a bit this morning. it was good for me, 'cuz once i got through some babbling about that, i got to thinking about how absolutely amazing it is that despite all the things i kinda loose 'cuz of being sick, there are still so many wonderful things to be grateful for. i'm so glad for it, and for that peace that's always accessible to me. i would do well to remember that more often. :)

so those are my thoughts of the day. that's what i'm trying to do w/ my brain while i work some more on that essay and i should get around to resting some.... and- aaoooh! the act! sigh. okay.

that's me.

de-stuck-ification

So I have this essay I have to finish for a class I already took but didn't finish, and I've been avoiding really digging in and accomplishing much. Now it's getting down to the wire and I'm afraid that I must actually write... Bear with me, please, as I babble. Or you can just not read this. Whichever.

Now we'll try a prompt... Why am I stuck? (Wait a moment while I find some nice background music for myself... my playlist? hopefully it won't get too distracting... otherwise I'll opt out for classical later....)

Why am I stuck?
aside from the fact that I've procrastinated... but then it comes down to- why have i procrastinated? enough questions.
my first thought is-- i haven't done enough research. i don't know enough about bone marrow transplants to write and essay on them. some little stubborn voice inside me says- so what! who said that a research essay about bone marrow transplants had to be just about the technical aspect? you've done other research- lots of it! you've talked to roo and interviewed her, gone thru emails, and watched her live the effects of the transplant and the illness that necessitated it. that is research enough for a pretty strong essay foundation. you have put a lot of thought into it all- even if most of that time, that thought has been in the back of your head. processing, as it were. okay then, so just get type and get those digesting thoughts digested and forming a final product- even if that product isn't pretty, it is much more substantial than it would be if it were still stuck in your bowels. (sorry readers for the gross metaphor/analogy-ing... that's just the way i've come to think, i guess. i guess it's similar to using roo's stomach hole as a body part when we played mad libs.) if you don't like the product, then flush it down the toilet. at least it will then be out of your system and you'll be able to to better digest other thoughts, hopefully producing something, though rough and unpolished and maybe even somewhat incoherent, you may still produce something worth revising and finishing. cutting chunks of something or other out of a big rock until you get a chunk that might just have potential, then scraping it around with your knife or whatever other tools you have, forming it into a lovely little stone to be quite admired. and so, don't be afraid to babble and produce some crappy work. there's a reason that rough drafts might just have the label "crap". so finish up the digestion process and produce some already!!
alrighty then, if i don't have to worry so much about the amount of research i've done (i could do tons and still feel uncomfortable), what am i worrying about?
and there it is... it's the fact that i will be writing about a dear friend. how do i do her justice in writing about her? i need to be honest- blunt. i need to get as close as i can to expressing truth, or rather-- to presenting truth, in such a manner that allows others to analyze it on their. and trust, that people will analyze the material appropriately and come to the correct conclusions. isn't that what good writing does? presents some material, then guides the reader to the well of truth, hoping that they may just partake of it themselves.... you can lead a horse to water, but you have to trust him to decide whether or not to drink.
okay, so the essay will be about not the oversweeping arching topic of bone marrow transplants in general- forget donnell e. thomas. forget the fact that the assignment was to write about something that happened the year i was born. put in italics at the top, if you feel you must, this message- "the year i was born, dr. donnell e. thomas recieved a nobel prize for his pioneering work with bone marrow transplants. this is a story about a recipient of the fruits of his labors- an evidence of the noble work he has done and how it has altered our world, leaving it better." then be done with all thought of trying to tie in your birth year.

a bone marrow transplant kept my friend here. for seven years. an early death, she knew was inevitable. if only i had known! if only i had taken the time and the courage to talk to her more about it! instead, i ignored the fact. disbelieved it. when she died, it slapped me in the face. her long fight for her life was over. i thank my God that it lasted as long as it did, and in the next breath, i think Him that it is over. most of all- i thank my God for the gift of my friend.
a bone marrow transplant brushes death. most of us walk down the sidewalk, see Death further along the way, and cross the street, hoping that doing so will discourage him and cause him to leave. a patient and her caregivers see Death not too far down the road, and realize that they can't cross the street to the other side. Death will come. so they mosey on up to him, look him in the eye, shake his hand, and say "please, go down the way a bit more and wait for me there. i'd like to walk along this sidewalk a bit longer." and then they keep walking, acutely aware of Death's proximity, but not knowing how far ahead he may actually be, or even if he is just walking by their side. is he laughing at how you boldly shook his hand? or is he respecting you for that boldness, and willing to wait for you to go with him a little while?
roo's bone marrow was Death's accomplice. first there was the aplastic anemia. (reference Anemia.) then there was the myelodysplasia.

i'll come back to this later. time for a break.

smiling

Okay, a few things on my mind, and as usual I'll address them here in a session of constructive babbling.

Last night was a neighboring stake's production of Savior of the World. It was really quite excellent. Unfortunately, not too long after it started did I begin to get a migraine (I should have listened that little voice in my head earlier that day that said "I think I'm getting a migraine"), and I also began to feel nauseous (as in, more so than my regular baseline nausea), so, out of the audience into the hallway I went. I sat against the wall and leaned my head on my knees, closing my eyes and trying to hear the performance. I could hear the songs (beautiful!) and the little kids running down the hallway. I think I remember sighing and having that feeling of frustration begin to well up inside of me. I was bothered by the fact that I couldn't be in there to listen to the play and have that oppurtunity to feel the Spirit. And then I remembered or realized something significant. I changed my perspective accordingly, and decided to allow myself to feel content. Even though I couldn't hear all of the performance, I was still perfectly capable of benefiting from the Spirit there. I decided to allow it to change my attitude and perspective- to get me in focus. To soak it up and help me to be more Christlike and kind.
I still struggled that evening (vomiting, friendship dynamics, migraining etc.) but found myself able to deal with it all and maintain some feeling of peace.

more later...

we thank thee for this pumpkin pie and eggnog

What to write? I've no idea. I just feel like writing. Okay, so to begin then I suppose...

Thanksgiving yesterday was lovely. I was, I admit, worried that everyone wouldn't get along, or at the very least, that things would be kind of tense.
It wasn't. Everyone got along and by the time we'd all been there for an hour, I was sufficiently relaxed and not worrying. Yay happy goodness!

I got to see my friend Anne yesterday, and found myself wishing that I kept up on my sign language more. I don't think I am any worse than I was last I saw her (about a year ago), but I am no better, and that is the frustrating part. (The fact that I was w/out glasses becasue they broke a month ago was hindering me as well lol. Could you fingerspell that again while I remember to squint?)
Communication. It is at the base of everything.
Interactions between people: words, sentences, talking, writing, eye rolling, shoulder shrugging, arm crossing, hugging, kissing, smiling, frowning, standing close, standing apart, sitting, shuddering...
Interactions between animals: meowing, barking, squeaking, growling, rubbing, licking, "marking"...
And then, even between inanimate things-
gravity's pull, electromagnetism, our own body systems: negative and positive feedback loops, hormones, cellular transport-- DNA and RNA being at the base of it all, controlling how the body communicates inside of itself and with its external environment (I think of homeostasis)...
molecules! atoms! atomic particles...

• transmit information ;
• transmit thoughts or feelings;
• convey: transfer to another;
• join or connect;
• be in verbal contact; interchange information or ideas;
(from here)

All of these things interact with one another, are joined or connected, convey, transmit... Communication-in one form or another- is critically important to this world. It is the base of life and order. Without it, everything would fall to chaos.

I wish I could communicate better with Anne. I wish I could touch deeper subjects with her- ask her about being Deaf, about her family, about her work, about people... I wish I could get her opinions on these things. I am skilled enough with my ASL to be able to conversation and to relay necessary messages. I am nowhere near skilled enough with it to be able to become acquainted with someone intimately- as I wish I could with Anne.
I'll have to exercise my ASL more.

I used to- so much more than I do. I still sign words here and there when I talk. I still have signs pop up in my head instead of words. But I don't, as I used to, practice. I would sit there and practice signs in my head. I would have a thought- and think of how I could best convey that thought in ASL. I would sometimes sign it to myself. I would sign songs while I listened to them (I still do that one from time to time). I would have, what seemed to me, very proficient and in-depth conversations with myself in sign language. (Yes, feel free to laugh at me. I am.) I can be quite comfortable signing things out... when I'm alone or with people less than or equal to my signing ability. Isn't it interesting how being around someone more proficient than myself causes me to doubt myself just enough that I loose some of my proficiency? (or, we could replace for that last word: confidence.)
I should work on that. I think I could converse with a little more ease about much more than just movies and food if I could over that.

Also, on my mind, is my health. Well, more specifically, my nausea. (Those who have weak stomachs/low tolerance for more in depth body discussions, would do well to stop here. Skip over. I'll let you know if/when it's safe again.)
I am a bit picky about where and when I throw up. Mostly because, I suppose, I am a bit self-concious about the whole thing. I don't want people to hear me, and aside from my immediate family and very very closest friends, I don't want people to know I am throwing up. Yes, I discuss it with relative easy, but it's much easier said than done (in more ways than one, actually).
At home, my family can tell when I'm throwing up not because of the duration of my bathroom-bonding, but because I turn on the fan. I don't really care much for the fan- I hardly ever turn it on after I shower- but I find it highly useful to helping me to feel.... I don't. Secure? Enough to proceed with my vomiting.
I have, at times, vomited in garbages because I figured they afforded me more privacy.
At seminary. We all know those girls who spend more time than they should in the bathroom, primping themselves for the day (we have, most of us girls, probably been one of them a time or two)- skipping class. Well, I usually don't care, aside from to roll my eyes... but I would like to add that the bathrooms at the church building where I have seminary are kinda small. And I'm friends with some of those girls. And they're really nice, decent people. So if I go in and start vomiting, it's different than it would be even at school because they will be concerned enough to ask me, multiple times, if I'm okay. And they'll actually be concerned about it- not just "oh no, someone's throwing up" but "oh no! cassanndre's sick! i hope she's okay..." I honestly, do not like the attention. (Even aside from the fact that I hope they're not all secretly wondering if I'm bulimic...)
Becuase of that, I have a new routine for when I have to vomit at seminary. I walk all the way around to the opposite side of the building- to the foyer where no one is. Then, grabbing the little garbage can from that foyer, I head outside- grab a twig to keep the door from closing all the way, set my garbage can down off to the side of the door (where passing people will be less likely to see me) and then proceed to doing my business. Bring the garbage can back in, go to the bathroom and wash my hands, go back to class.
Throwing up without worrying about anyone hearing me. Yay.
Except for the one time that were two friends of mine in that foyer. That was uncomfortable. They looked at me funny, asked if I was okay (I thought- wow! I actually look how I feel for once, apparently.), looked at me funny again as I grabbed my garbage can, explained I was going to go throw up and I'd be back (if the nausea had been any amount less, I would have turned around and just tolerated it until I got another chance later to throw up). That was fun. Thankfully, they had the good grace enough to not say much when I came back. I laughed a bit and joked about how I hoped that no one thought I was bulimic or anything- I just have health problems. (Yes, that's my way to make sure no one thinks I have an eating disorder.) I then went back to class. That was that.
Public places... I go to throw up in the school bathroom, but dangit, there's always a bunch of girls in there, so I either have to temper my throwing up (which leaves me still nauseous and with more coming later, undoubtedly) so they won't hear me, or wait until they vacate the place, or just go on with it as I would, hoping for enough toilet flushes, hand washing, and paper towel dispensing form them all that they won't hear me too much.
Being in public places with friends... ha. I remember coming out of a movie a couple times having to throw up. Excused myself to use the restroom (got someone to hold my purse for me once), and spent my fair time in there- grateful to friends who waited for me. Coming out, I'm sure I didn't look well- in fact, I even got the sympathetic look (more on that later, perhaps) from those who know me well enough to realize that I was probably throwing up. Some quiet are you okay?s came from those people as well. The funniest, though, I have to say, was when Derek was joking afterwards and asked if I had to throw up or something. I was taken aback, and still am not sure if he knew he was right, but I responded as nonchalantly as I could, "actually I was". Silence. Change of subject. I laughed inwardly.

(Okay, weak of stomach, 'tis safe again.)
The sympathetic look. Even though I don't like the attention being drawn to me while I'm not feeling well, I do really really appreciate my friends' concern. I appreciate it when I've told them that I'd be okay- go have fun- and they did. I appreciated it when one dear friend out of them all would stay behind with me and just sit with me, talk to me, while the rest of them went off as I wished they would. I appreciated it when, after having some more fun, the rest of my friends came back a bit earlier than normal so they could check on me, and decided to leave a bit earlier than normal on my account- but let me think that it was because they all got tired just a bit early. I appreciate the friend who I can call up when I feel like crap, and who will just talk to me about anything to distract me. I appreciate the friend who recognizes when I am really really not feeling well and makes sure to let me know I am cared about- without drawing everyone else's attention to me. I appreciate those who can tell, in one second, what everyone else can't. I appreciate those who respect me and understand when I don't want extra attention, and when I both want and need it, give it (sometimes without even being asked). I appreciate those who keep in touch. Who call me and invite me to hang out or go do something, even when they know I may not be able to, but make the effort just the same- reminding me that they still want me around. I appreciate those who are willing to just hang out at my house (or sometimes theirs) instead of doing something more- because they know that I'm too worn out. I appreciate those who ask me what I need from them, and then try to do it. I appreciate those who help me to remember that it'll all be okay, that I have the ability to endure it all and come out the better for it. Those who understand that I have to miss out on things, and rearrange things, and don't judge me for it. I appreciate those who listen to me complain and vent, and then help me to find my optimistic outlook again.

I appreciate this opportunity to see just how wonderful my friends are.

how are you?

It's really quite an innocent question. I promise. I ask it all the time, and then ask it again two minutes later because I can't quite recall if I had already. And for some reason, it seems vitally important to me that I make sure to ask someone how he/she is. If I don't, they might think that I don't care about them or something awful like that! Oh the horror... or something akin to it.

For as much as I like to ask the question, I have recently developed a distaste to people asking me how I am. I may even start replacing this question in my own speech. What does it really matter if I don't ask someone "how are you?" or "how's it going?" every time I see them? I do it only because I want to let that person know I care, and I really am (at least usually) genuinely interested in how their life is going. However, maybe I just need to trust that if I can express my concern some other way and get a conversation started, people will tell me how they are without even being asked. Especially if something is on their mind. Why should I force it? It will come out when it's ready, and the telling of it will (generally speaking) be much more beneficial in that situation than in one in which I poked and prodded for information.

But I digress. The reason I dislike people asking me "how are you?" is because despite being programmed by our culture to offer the standard "fine. you?" and brush over it as being just a formality, a common salutation;- I often cannot just dismiss the question. I feel an urge to answer it honestly, if not succinctly. I see the question as more than just culture-programmed-greeting, almost as rhetoric. I see it as a real desire for information (that is how I employ it). I see it as an opportunity for conversation and bonding or something cheesy like that. Perhaps I put too much weight on those poor three words. Perhaps it is more than they are meant to bear with each and every use. Despite this, every time these three words cross me, I can't help but think "But surely I owe you an accurate answer!"
It's not so much that it's a nuisance to try and give an accurate answer- I don't mind tangents, and summaries, and rambling stories (the sorts of answers one might get if people took the time to "accurately" answer our favorite loaded question). The problem is that as of late I never know what to say! I don't know whether to tell the truth, or to lie.
Yes, yes- my gut screams at me-- lying is bad! But honestly, if I were to answer truthfully everytime someone asked me how I was, it would very well have the potential to get depressing. The most promising accurate answer looks something like this:
"Oh, not too bad today, actually. I only have a little headache, and my nausea isn't all that bad today! If this keeps up, I may even brave solid food for breakfast!"
Less promising is something like this:
"You know what? I don't know. I think I might be getting a migraine. I also feel incredibly nauseous and might have to go throw up in a few minutes, which kind of sucks because then if I were to take my migraine medicine it would just come back up and not do me any good."
First place on the sucky-answer-o-meter would be:
"Not good. I just puked my guts out for the second time in an hour, and it was really hard work, so now my asthma's acting up and I have to use my inhaler, which is annoying because it doesn't seem to be working and the more I spray it, the more shaky I get- and I was already shaking and shivering before the danged inhaler! I also feel kind of light-headed, tired, and really weak. [there's a reason I'm holding on to this chair in between inhaler spurts. it's because i feel like i need the support, or grounding, that a chair can offer.] My headache seems to be less for now, but I'm wondering if that's because it's actually better, or just because I threw up. In the case of the latter, I hope I'm not getting a migraine..."

Yes, exactly- there is a very pronounced disadvantage to answering the "how are you?" question accurately.
I don't want to be the sort of person that always complains about her illness. I don't want to be making people feel bad for me every time they ask me how I'm doing. I don't want to revel in my health problems. It's just no fun- yes, even with a sense of humor it gets old!
But what to do?
My other dilemma is if I just say "fine", "good", etc. when I'm not actually doing "fine" or "good". In all actuality, I feel quite the opposite.
I can say I'm good, and really mean it- as far as my mental, emotional, and spiritual statuses go, and honestly, that usually doesn't get me in any trouble. Sometimes, however, saying I'm doing well can lead to some trouble. Especially when people actually believe me.
For example, if I don't manage to get something done because I was fighting the urge to reject my lunch, or the urge to drop everything and go find a pitch-black, noiseless room to go take a nap in, people may get upset and ask why I didn't complete such-and-such-task. When I respond "I'm not feeling well" they look at me dubiously and seem to be saying, "but you said you were feeling well!"
To which I almost want to put my hands firmly on my hips and angrily respond, "and you believed me?! I only said it because I didn't want to complain! I neever feel good physically. The variance isn't in feeling good and bad, but in what level of bad I feel and how tolerable it is and how well I am able to be my happy self in spite of it! Get used to it and don't get mad at me when I can't get everything done because I'm dealing with whatever health problem I have to deal with!!"
(What we have here is a failure to communicate. (One of my grandpa's favorite movies.))
But that would be unkind and uncalled for. But you get the idea. You understand my frustration, right?

I have lately taken to responding to the offending question in one of the following manners:
"I'm happy!"
"You know what? Life is really good."
"Hmm... I don't feel my best, but I'm doing quite well up here" (tap my head)

When friends ask me and I happen to be feeling worse than normal, I respond with my own little joke:
"How do you mean? Mentally or physically?"
this one usually takes them by surprise. I can see the gears churning in their heads as they think "is there supposed to be a difference?"
I laugh and answer my own question, "I'm really not feeling my best. But life is good, and I'm happy and that's what matters."
In these situations, I can't help but feel like I'm trying to convince myself of it just as much as my audience.

It really isn't that difficult of a question to answer- even with my dilemma. As demonstrated above, there are ways to answering succinctly, accurately, pleasantly, happily, and still fall within the realms of culturally appropriate.
Hi! How are you?

Nonetheless, I'd rather not bother.
Hi! I'm so happy to see you!!

in awe

I have recently taken to reading medical blogs, such as Code Blog, A Chronic Dose, and oncRN. They are terribly interesting to me, and have gotten me to think- so much so that I may even take up blogging myself! (not even just settling for posts of my schoolwork!)

On my thoughts today is this post by an oncology nurse.

i don't know what it is about this woman, but i know she has buoyed me somehow today and i feel grateful. why does it feel like she has taken care of me? ... as i go to leave, i want to say thank you...but that sounds weird.
so i just say good night instead.
see you in the morning.

I think I know what it is about that woman. It is her ability to see the world as normal while she is in a completely abnormal situation. It is her refreshing point of view. She is like breathing the crisp morning air. You breath it in- long and deep, savoring the smell and taste-, and you feel it spread from your lungs outward. It pushes out that stale lifelessness, reminding you to really live.
It reminds me of Roo. She had the amazing gift to be comfortable at the thought of her disease. It still caused her pain- both physically and emotionally, but she took it all in stride- accepting it as just another normal part of life. She didn't avoid or dodge around a topic. She lived loving people. She was happy- cheerful, joyful. If she had something she wanted to say, she would say it. She always spoke that way. She was the crisp morning air. She woke people up, gave them life, and reminded them to live it. Blunt. Realistic. Tenacious.

That tenacity for life- while being in constant pain, when isolated, and despite knowing that you may very well die- is contagion. It is what "buoys" the rest of us.
It is how the patient paradoxically becomes the caregiver.
It is that quality which boldly allows one's greatest strengths and deepest shortcomings to be equally displayed to the world.
It is what allows the world to analyze those strengths and shortcomings.
It is what causes the world to look on an imperfect person in awe.