Wednesday, November 28, 2012

More Misery (I'm sorry in advance)

This morning was kind of a struggle. The trigger was obvious: I weighed myself. But Kaylee! you might ask, Don't you weigh yourself every morning, you  crazy, obsessive, neurotic, fat-phobic ED freak? Well yes, I used to. In fact, I have recorded my weight every morning for the past three or four years now, except for a couple times while traveling or something without access to a scale. But since realizing that the Chub Drug has been pushing my weight up no matter WTF I eat, I decided that stepping on the scale was way too depressing, so I stopped. I still pull it out a couple times a week just to check, but on average I've been weighing much less often than before.

Well, I switched meds about a week or two ago, and New Drug supposedly has a smaller possibility of causing weight gain than Chub Drug. So I held off weighing for a while after switching just to give the Chub Drug a chance to get out of my system and this morning, I decided to check. Big mistake. I am at my highest weight in about four or five years, and I am double-digits more than I was six months ago. (Granted, my weight in May nearly landed me in the hospital, but still.) The jeans I've been wearing since 2009 don't fit anymore. This sucks. So I started the day off crying after a pretty semi-okay week or so, and now I'm feeling just about as low as ever. The eye doctor did not give me good news yesterday, and I'm in pretty terrible pain, and New Drug is turning me into a zombie, and I'm so fucking sick and tired of this I'm just about ready to give up. I was so hopeful that gaining weight and eating a balanced diet would help resolve some of my issues, but no. Nothing. I don't understand how my body can be all porked up and still so incredibly unhealthy. This can't last forever, right? It must be fundamentally impossible for one person to be so miserable forever. Right?

Sorry for this one. I don't really talk about this stuff in real life, so you guys get the brunt of it. Hope everyone's doing okay, love you all.

Sunday, November 25, 2012

Sunday Shenanigans and Positive Thinking

Good morning, all my lovely blogsicles. I am trying a new thing this week - it's called positive thinking. It sucks to be a grouch all the time, you know? I have an appointment with my eye doctor tomorrow, hoping it goes well. My eyes have been feeling a little better recently so maybe all the millions of drops I'm using are finally working! I also managed to snag an appointment with a big wig pain specialist in Home City over winter break. I am so over my current doctor, who is a grade-A bitch with a serious ego problem. Plus she keeps telling me to eat less sugar. Um, no. I assure you, that is not the problem.

My mom and dad left College City last night and of course, I cried like a baby when they drove away. Hi, I'm Kaylee and I'm twenty-two years old. Have I mentioned that I sleep with a teddy bear and read all three Hunger Games books this summer? But seriously, overall it was a really good holiday and I totally rocked the food part. Has anyone tried the new turkey avocado BLT from Panera? It's heavenly.

More tidbits:

- Got my period again! That's five - count 'em, FIVE - months in a row. At least something's working, right?

- I became Unofficial Chauffeur for my brother and cousins this week, and put over three hundred miles on my car in four days. But my daddy spoils me rotten and filled up my tank last night.

- My brother got a leeeetle bit drunk at dinner out with the whole family the other night and belted out Taylor Swift songs the whole ride home. He was a-struggling when we had to leave for the airport at five the next morning.

- One month til Christmas!

- Ouch. My uterus hurts.

Friday, November 23, 2012

Post-Turkey Day Reflections

Not gonna lie, I wasn't really feeling very thankful for much going into the holiday yesterday. Most of the past year has been really really hard on me. My health pretty much sucks and I am perpetually stressed, uncomfortable, and miserable. But I've spent enough time being sad and self-pitying about all that, you know? I have so much to be grateful for, if I just step back and think about it for a bit. The food in my refrigerator, the clean water running from the taps, the bed I sleep in, the roof over my head, etc. And despite feeling pretty low lots of the time, I am still perfectly functional, living a nearly full life with friends and family and school and work. Some people have such terrible health that they can't even get out of bed in the morning, much less bop around campus all day and live a busy, independent life.

We had a wonderful holiday yesterday. It was me, my parents, my brother, and a bunch of cousins, aunts and uncles all at my aunt and uncle's house out in the country about an hour from College City. The landscape was beautiful, and everyone was happy and welcoming and warm. Plus there were cute dogs to play with. I wasn't very adventurous with dinner - turkey, sweet potatoes, salad, roll - but I did have a couple glasses of wine and a big ole slice of pumpkin pie with whipped cream. I was self-conscious about my weight for about five minutes, and then promptly forgot to worry about it. I have two female cousins who are within a few years of my age and it was actually amazing to see how healthy and normal they were. They are both tall, beautiful girls with rockin' bodies and super stylish clothes and fantastic appetites. Funny that we still have a "kids'" table at these family gatherings, even though the youngest "kid" is seventeen and the oldest is twenty-seven. Also kind of funny that only one of us (the poor seventeen-year-old) was pouting about not being allowed to drink. Used to be that only a select few could smugly have a beer while the rest of us watched in awe. Okay, I'm getting off-topic now.

I was feeling a bit better physically too - for some reason, my pain is always dramatically reduced the week before my period, which should be coming in the next few days. No idea the physiological mechanisms going on there, but that's usually how I can tell that my period is coming (because it's still pretty irregular) - the pain decreases and I get cramps instead, haha. I am probably the only woman in the world who eagerly anticipates PMS all month. Go hormones!

Anyways, I'm grateful for my family, for turkey, for PMS, for all the life essentials that I take for granted daily, and for a body that - while sick - still allows me to live a real life.

Happy belated Thanksgiving to all, hope you are having a fantastic week.

Tuesday, November 20, 2012

Thanksgiving Week Kick-Off

My brother got here yesterday, and thus begins the start of a hopefully-not-too stressful week of family Thanksgiving festivities. We are celebrating in College City because a lot of my extended family lives here, and one of my cousins and I go to school here (different universities, though). Big Brother B is staying with me, and my parents are staying in a hotel when they get here tomorrow night.

It's a relief not to have to travel  this year (I HATE airports), but I'm semi-neurotic about having someone in my space. That being said, B is totally laid-back, easygoing, super low-maintenance and flexible about everything (aka the opposite of me...) so he's a pretty simple houseguest. Plus, he makes me laugh and that is much needed right now.

I discovered that my brother has not been kept in the loop about my health - I've never fully filled him in, and I guess my parents haven't either. At first I was a little shocked that he had no idea how messed up things have been, but then I was grateful for the chance to slip back into Normal Lil' Sis mode. As a kid, I completely idolized my big brother and bounced around after him like "B! What are we gonna do next??" Even now, I still think he's pretty much the coolest kid around. He took me and a couple of my friends out last night, which was fun and relaxing. B treated us to dinner and generally charmed everyone and for a little while, I forgot what a FREAK I usually am.

I love my family and am excited to see them, but 1) I still feel pretty physically crappy all the time and 2) I am super self-conscious about my weight, which is X pounds higher than the last time I saw most of my relatives. I hate that my own issues might interfere with family time this week. Really really hoping I can keep my shit together and be a normal sister/daughter/cousin/niece this weekend and enjoy the holiday. Happy Thanksgiving everyone!

Sunday, November 18, 2012

Lessons Learned

I realize that this probably doesn't apply to everyone. The vast majority of people see the doctor only occasionally for a check-up or a random illness/injury or whatever. Lots of medical issues are pretty straightforward, and the treatments are simple, established, and effective.

But chronic illness kind of changes the landscape. Over the past year, I've gotten an pretty extensive education in How the Real World Works.

Lesson #1: Doctors are not gods. They come with biases, agendas, and egos. Sometimes they are just plain ignorant. Sometimes they just simply don't care.

Lesson #2: Certain recommendations are meant be ignored. One of my doctors recently told me to try eating gluten-free because "the American diet is highly inflammatory. All you really need are fruits, veggies, and fish. Not too much dairy." Hi, Doc, have you read my chart? Telling the anorexic to cut fat and carbs is proooobably not the soundest advice. Also, you are full of bullshit.

Lesson #3: Be rude when necessary. When scheduling an appointment, never accept the statement: "She's booked three months out." It is always a lie. Don't shy away from being a demanding brat.

Lesson #4: Get a second opinion. The main pain doctor I've been seeing originally told me that physical therapy wouldn't do any good until I got the nerve pain/stiffness under control. So I got desperate and found another doctor, who referred me to a physical therapist immediately. Knock on wood, but I think it's helping. My pain is ever-so-slightly lessened and I am feeling the tiniest twinge of optimism.

Lesson #5: Don't worry about offending the original doctor by doing #4. They are professionals, they'll get over it. And if they don't, ditch 'em. There are plenty of other good doctors out there.

Lesson #6: Educate yourself. Not to the point that you are having panic attacks reading horror stories about drug side effects and incurable diseases on the internet, but enough that you have a basic understanding of what is going on, what works, and what doesn't. It's your body. In the end, you are the expert.

Friendliness and courtesy have always been important to me. I try really hard to treat people with respect - whether it's a professor, a friend, a cashier at the grocery store, or a random homeless Joe Schmoe on the street. It makes me sick to overhear someone being needlessly rude or snotty. But you know what? Sometimes you gotta look out for #1. Sometimes it takes a little brattiness to get what you need. I've bullied more secretaries over the phone in the past six months than ever before in my life. I routinely find myself saying: "No. I need to see the doctor this week. Find a space." Sometimes I can make it happen while staying polite, and sometimes I can't. And I'm okay with that.

Does that make me a bad person?

Happy Sunday, everyone.

Wednesday, November 14, 2012


Hey guys—I am still processing my incredible gratitude towards you all. Reading the comments on my last post literally brings me to tears. I am so unbelievably overwhelmed by your compassion and insightfulness and general amazingness. I think my blog readers must be some of the most wonderful people in the world.

In case you hadn't picked up on this, I've been more than a little down lately. I cry every day. I have a hard time sleeping. I'm not eating super well. I spend a lot of time thinking seriously about what it would mean for me to be in this physical condition forever.

But, somehow, life goes on. It's funny like that, you know? I attend (mostly) all my classes, even if I cry on the walk there. I talk with the people around me. I go to all my meetings. A draft of the second chapter of my thesis is on target to be submitted on Monday. In a meeting with my four-year advisor, we discovered that I've pretty much caught up after taking a semester off two years ago. As long as I jam-pack my spring schedule, I'll be graduating with the rest of my class in May.

My roommate says it scares her how normal I can be. She knows what's going on, for the most part - I've broken down in front of her more than once, and end up spilling more and more each time. But 99% of the time, even with her, I act just fine.

It's nothing new, nothing you guys haven't heard me talk about before. It just feels like everything has been building up all year and is now finally tearing me down - and it feels like it's for real this time. I don't see myself getting back up from this. I suppose I will, somehow, but I don't see it yet. I don't feel capable of coping with everything that has gotten dumped on my plate. I try picturing myself in five years, or ten, or twenty, and still having the same issues with my eyes, with the pain, with medications - and of course, the eating disorder - and it just doesn't seem possible, or worth it. I can't see a life for myself like this.

I love you guys a lot, and hope you all know how much your support means to me. Sorry to be so inarticulate about everything; I just don't know how to put it all into words. More soon.

Friday, November 9, 2012

Deep Breath

This morning at therapy, I told R some stuff that I never thought I'd need to. I've been having some really scary thoughts lately and couldn't handle them alone anymore. It was really hard, and painful, and it took a huge leap of faith. You all know how much I complain about R—he's not perfect, and neither am I, but damn I think we both stepped up today.

Wednesday, November 7, 2012

A Bloodless Tale

This week has been insanely busy. Meetings, exams, work, tutoring stuff, appointments, etc. Sometimes I'm not sure how I manage these long days when I usually wake up feeling like I don't even want to get out of bed. BUT I've actually been feeling a whole lot better lately (knock on wood...). And this seems silly but it's semi-monumental so don't laugh, but I haven't cried in like four or five days now. WHO AM I??

My school had a blood drive this week, and I really really wanted to donate. I'd only given blood once before - my freshman year of college, which was the last time I met the minimum weight requirement, and the last time my health was remotely stable enough. It ended up being quite an ordeal because I have itty bitty baby bird veins, and it takes people FOREVER to get needles in. I ended up getting stuck in both arms because they couldn't get enough blood out of one, and my vein kept collapsing. There were literally multiple Red Cross people taking turns trying to make my lil veins cooperate, and I ended up being there for a solid hour of bloodletting. Then when I stood up, I got super dizzy and stumbled around for a while until someone made me drink a bottle of water and eat a bag of pretzels.

But regardless, I loved giving blood. It made me feel amazing and useful and powerful, and I swore I'd give blood at our drives every three months. Then, of course, I started losing weight and that was the end of that.

So the other day, I was walking through our main dining hall on campus when I saw a sign for the blood drive, and I decided totally impulsively that I wanted to give blood again. I figured I might as well take advantage of one benefit from the Chub Drug - the fact that I now actually weigh enough to donate blood. In fact, I got really excited about it and was looking forward to feeling useful and powerful again. So I went upstairs to the room where the Red Cross had set up, signed in, and started filling out the paperwork.

And then it hit me that although my weight is higher than it has been for a while, nothing else about me could really be considered healthy. The pain, my eyes, the hormone issues, etc. Plus my vitals are always a little screwy, and having my blood drawn at the doctor's always makes me woozy. There are also multiple medications coursing through my veins - not sure if that precludes you from giving blood, but I definitely did not want to advertise my drug regimen to the Red Cross.

Honestly, the sight of all those people lying on stretchers with needles in their arms just freaked me out and made me sad. I am so freaking sick of anything to do with medicine or doctors or sickness etc., I suddenly just wanted to get out of there. I didn't feel useful or powerful at all; I felt weak and scared. So I tore up my paperwork and left.

It just sucks to be the patient all the time, you know? I really wanted to be able to give something back and be part of something bigger than myself. There will be other chances in the future, I guess, and I should probably take care of my own issues first.

Monday, November 5, 2012

Monday Musings and the Chub Drug

Happy Monday, everyone. Hope it's been a fantastic weekend for all. Mine was fairly good, although a smidge chilly for my liking. There was also a lot of time spent starting at my computer without actually accomplishing much. Then I hung out with some friends the other night, and made plans to get dinner with two others this week. I daresay, sometimes I think I might just be almost normal.

I just realized that I haven't seen my dietician in over a month now. The food piece is really weird for me right now. I'm eating fine, or more fine than I was for most of last year, although I am still incredibly rigid and ritualistic about it. No casual snacking, no spontaneous treats, not breaks in routine, etc. My weight is deceptively creeping up thanks to this damn DRUG, because even I know that I'm not eating enough to be gaining weight. I feel like R always wants to harp on the food issue, and I just kind of want to shrug it off because I feel like food isn't a huge issue at all right now.

I am seeing the doctor who prescribed the evil Chub Drug this week, so I'm planning to ask her about possible alternatives. Maybe with starting PT, I will be able to taper off the medication without too much trouble. Although maybe that's being overly optimistic, since I seem to have developed some new back and hip stiffness/pain/weirdness over the past couple of days. Does anyone know whether ice or heat is better for that? I've tried both, and I can't tell which one felt better.

Honestly, I don't really know what I want to happen. Correction: I do know: I want to come off the drug and have my weight drop back down to where it was a couple months ago. But then the rational part of me knows that that will put me back into the underweight category, and therefore right back where I started, and right back to where all these issues started in the first place. I keep telling myself that I am okay with gaining weight as long as it is on my own terms and not because evil Chub Drug is messing with my innards. But then I realize that I'd probably be incredibly uncomfortable at this weight (first minimum goal set my R and J) regardless of how I got there - a.k.a. via increased calories or drug-induced gain. It's unfortunate that a fear of weight gain is causing me SO much distress and unhappiness, but I don't know how to view it positively, especially when I'm still not eating very well in terms of quantity, variety, flexibility, etc. etc. etc.

ARGH. Maybe it is time to go back to therapy. Have a great week, everyone!

Friday, November 2, 2012

Body Update

I started physical therapy this week, where I was told that I have muscle wasting, tissue damage, and a whole lotta general bodily instability. Bring on the good news! I suppose it's good to have more information rather than not, but hearing about everything wrong with my body tends to freak me out. Trying to stay calm and do the exercises PT Lady gave me (nothing too calorie-burning, alas. Just kidding!) and ice and stuff. This therapist seemed pretty familiar with issues relating to anorexia, and was definitely sensitive to all the complexities that history brings. Plus she seemed more optimistic that things would improve with time and increased strength and all that. One really good sign: when she checked all my pain trigger points (I don't have fibromyalgia but this is the general idea), I tested totally negative for some that I'd had before, meaning no pain on pressure, meaning the neuropathic pain medication I've been on is working. Bad news is that I still somehow have a lot of pain on a daily basis (think: walking, sitting, being awake), so that sucks.

Something happened in my doctor's waiting room before my appointment this week that made me really angry and unhappy. The details are too long and complicated, but basically a patient had to leave without seeing the doctor (after having to wait two months to get an appointment) because her insurance company fucked up and refused to cover her. She was not informed of this ahead of time, meaning she didn't have a chance to contact the insurance company and appeal before the appointment. So she had to take the next available appointment in January, and left the office in tears. This is not okay. Can I be really candid for a second? The United States is one of the wealthiest, most scientifically advanced countries in the world. Everyone should have access to healthcare. Period. I've never felt so personally invested in elections before, and I'm not going to launch into a political tirade (although you could probably guess which way I'm voting if you really tried), but what happens if the new health bill gets yanked out from under our feet and suddenly I'm 23 years old and have zero ability to get health coverage because of my multiple preexisting conditions? What the hell am I supposed to do then? 

Other body stuff: My weight is the highest it's been in over a year. Am I freaking out? Um, YES. I do not like this one bit. But there's not a whole lot I can do about it right now, so I suppose there's no point in getting upset about it. At least that's what I'm trying to tell myself, since of course I'm still upset about it anyway. To say that I have bad body image right now would be the understatement of the century. Kind of like saying NYC had a couple breezy days this week. Or that Lance Armstrong bent the rules.

But how about some more good news: my birthday was lovely. My new phone FINALLY came. I'd been phone-less for a full week and let me tell you, it was rough. But, you know what, absence really does make the heart grow fonder. And my heart is super fond of having a phone again. I love you Phone! I'll try real hard not to drown you!