Just wanted to pop in and wish everyone a quick happy New Year's! It hasn't really hit me yet, but the years seem to go by faster and faster every time. I'm heading out to a friend's house in a few, but wanted to end the year on a more positive note than my last post ;) And for what it's worth, I really value everyone's thoughts on that—I wrote from the heart (well, more like from the gut) and admitted to feeling some things that I'm not necessarily proud of, but needed to get them out anyway. The only good part about having had a shitty 2012 is that 2013 is bound to be AWESOME in comparison.
For a really long time, I never wanted to get better. Sure, it was no fun obsessing about calories and freaking out over restaurants and working out ritualistically. Being hungry sucks. Being tired and weak sucks. Lying to your parents sucks. Shutting out friends sucks. BUT you deal with it. Why? Because being skinny is more important. So for a really long time, I saw my eating disorder as the solution—the one thing that proved I was worthy and capable. I took sick pride in being the skinniest of my friends. I brushed off my parents' worrying and the EKG results because I had the solution.
And then my body started to fall apart. Last winter, I started getting sharp stabbing pains in my pelvis, hips, and back. I couldn't sit. I couldn't walk. I couldn't sleep, but I also couldn't stand to be awake because of how uncomfortable I was. I saw at least twenty different doctors—orthopedists, endocrinologists, gynecologists, gastroenterologists, pain specialists—and they all told me something different. No one had any idea what was causing my pain and what I could do to alleviate it. On top of it, my eyes started deteriorating as well. I'd had dry-ish eyes for the year or so prior, but they got infinitely worse about a year ago to the point where I was barely functioning. I couldn't look at a computer screen for longer than about twenty minutes at a time. I had to stop driving for a while. I saw five different ophthalmologists and nothing worked. I couldn't imagine the rest of my life that way. I cried all the time.
Meanwhile, my weight hovered in the underweight-but-not-scary-underweight realm for about two years. I restricted my intake to a low-but-not-scary-low amount. I was not having periods. Only until this past spring when I got food poisoning and inadvertently lost a few pounds did I go back to hardcore restricting because I figured, what the fuck does it matter? I'm going to be miserable anyway, so I might as well be skinny too.
It was hard to see myself as sick for most of the past two years, because my weight and intake were both well above my rock bottom point in late 2010. But I started having all these crazy symptoms—the nerve pain, the dry eyes, and some GI issues. I had a gut feeling that it was all related, but I guess I was just in denial and thought, like I always had, that being skinny was the answer. It was only until I saw Dr. A last week, and heard him say that of course the anorexia, the longterm amenorrhea, and the associated ongoing stress on my body caused the problems, that it really started to sink in. It wasn't a freak thing or a random gene mutation that caused my pain; it was months and years of accumulated damage.
I have much more hope now than I have in a long time, but I'm also sad. I did this to myself. I essentially wasted a year of my life being hurt and sick and so depressed I wanted to die. Dr. A assures me that the damage is reversible, and that the pain will eventually subside, which makes me happier than anything has in a long, long time. But I am also scared, because I don't know how to shed this part of myself, the anorexia, that has been my solution for so long. Forgive me if this seems dense, but it has taken this long for me to realize: anorexia makes me sick. It hurts me. I've never seen it as the enemy before, but now I do. I cannot have anorexia and be okay. My body can't take it.
Ultimately, I think recovery is going to stick for me this time. I simply can't go through this again. And I don't mean the hunger and the weakness and the ED obsessions—I can handle all that. But I can't go through the pain again. Lately, I've been thinking a lot about whether or not it was a blessing in disguise to have this happen to me, since I seem to have found the ultimate motivation for maintaining my weight. And you know what? It wasn't. I am not grateful for anything that happened. This experience didn't make me a better or stronger person or anything like that; it made me a worse person for a long time. It made me angry and bitter. I was a terrible daughter and a terrible friend. And I've only been hurt for a year. I don't know how people with true chronic pain—like with fibromyalgia or vulvodynia or sciatica—ever learn to cope. When I found myself facing a future of incurable pain, life wasn't worth living.
I've tried so goddamn hard to stay positive throughout all this and be my usual happy silly self, but there's only so much you can fake. Pain changes you; it makes you cranky and ugly and mean. I'm angry that millions of girls have anorexia without suffering through the horrible physical consequences that I have. That millions of girls can get through anorexia with nothing more than a low heart rate and some body image woes. And I'm angry that an otherwise healthy person might wake up one morning with head-to-toe pain and have his/her life changed forever. I know that it's incredibly unfair of me to be so resentful over something that none of us can control but...you know. It's my blog, right? And life isn't fair. And I am so angry.
I wouldn't wish the past year of my life on my worst enemy. But if nothing else, at least now I have full confidence that I will never relapse with my anorexia again, because I can finally see that it will only continue to hurt me.
I must say, Christmas went much better this time around compared to last year. It seems crazy to me that a whole year has passed since I wrote that because in a lot of ways, I feel like I haven't really moved forward all that much. This past year has been the absolute hardest, worst year of my life, and often it felt like the days were dragging. But now looking back, it feels like time has flown.
On Christmas morning, we woke up, opened presents, made breakfast, went on a family walk (minus my brother....Big B is NOT into nature), then came home and chilled out for a while before my mom and I made dinner—steaks, shiitake mushrooms, brussel sprouts, roasted potatoes, beer bread, and chocolate whiskey cake. I ate really well and enjoyed the meal very much, except that I skipped the potatoes, cake, and wine. Sue me; I'm anorexic.
Overall, my mood is worlds better than it has been for much of the past several months. I haven't cried ONCE since being home, which is actually a huge deal, sadly enough. I'm going a little stir-crazy sitting around all the time, but I'm still not able to exercise and I have tons of thesis work to do over the break so I've been parked in front of my computer all week.
I just really miss working out. You would think I'd be used to the sedentary life by now, but it seems to get harder and harder all the time. It's not even an obsessive ED thing anymore; I just miss the feeling. And I do think I'd like my body better if I were active and in shape. Both my parents are super consistent exercisers, and it's driving me nuts to watch them head out to the gym while I'm stuck at home. In time, Kaylee. In time. I've been trying to go for walks and do push-ups and abs stuff at home, but it's just not the same. Any suggestions? New Dr. A was pretty adamant about the fact that I should probably avoid strenuous exercise FOREVER, but I'm not sure I'll be able to stick to that. I'm assuming that if I eat enough to compensate and am still getting periods, it's probably okay...right? I'd be super careful to no overdo it, but I can't imagine giving up running for life. He recommended yoga, which I've never had patience for in the past, but maybe I'll give it another shot. Can't hurt.
My mother, who teaches fifth grade by day and moonlights as a rapper by night, is currently bouncing around the house singing "Shake it to the ground and bring it back up, twirl it all around, YEAH YOU KNOW WHAT'S UP." I think that's my cue to intervene. This is mortifying for all involved.
Hope everyone is having a lovely week. I've just been hanging out at home today, having a nice Christmas Eve with my mom and dad, baking bread and cake for tomorrow, and generally feeling pretty okay about life. I haven't started any of my new meds yet (they're getting shipped in sometime this week) but it's such a huge relief to have a plan in place and know that I won't be sick and messed up forever, and that the end of all this crap is in sight.
I know that I talk about this stuff a lot, but it's hard not to think about it. Sorry to be boring. The pain is on my mind twenty-four hours a day, like this horrible nagging burden of a reminder of what I've done to myself. As if feeling like a pudgeball isn't reminder enough.
Speaking of, I'm still not super happy about my weight, but I'm feeling more motivated to maintain it than I have in a long, long time. The last time I weighed this much was back in the summer of 2011, and even then I was sloowly cutting back on food, creeping up on exercise, and fully planning to restrict once I got away from my parents and back to college. Now, I realize that my body absolutely must be at a healthy weight to function, and I don't want to risk losing my period and messing up my body all over again. The stakes are too high, and the risks just aren't worth it.
Anyway, onto some lighter updates: I saw my best friend from high school the other day. In fact, we spent about three hours chit-chatting away in a coffee shop about school and future plans and boys and stuff. We are both kind of in disbelief that we'll be graduating from college in less than six months. I don't think my parents quite believe it either, since they keep putting off making their reservations for graduation weekend... Thanks for the show of good faith, Mom and Dad!
I am also rediscovering some delicious foods that, for some reason, I only eat at home. Omelets, clementines, steak, green beans, crackers, cashews, etc. I'm lazy about cooking at school, and get stuck in a perpetual food rut where I always eat the same stuff over and over again. No time or energy for being adventurous during the school year, I guess.
Oh! And my eyes still feel GREAT. My mom keeps calling it my "Christmas miracle." No one out there ever take your eyeballs for granted, okay?
I promise, this is the last doctor appointment recap I'll be doing in a while (because I have no more appointments until I go back to College City and see R in mid-January), but I had to post something. I am so overwhelmed with relief and gratitude that I almost don't know what to do with myself right now. Yesterday, I saw a new chronic pain doctor in Big Home City and, you guys, he told me I'm going to be just fine. Whereas everyone else—including the "specialists" in College City—told me that my pain was incurable and there were no options besides staying on the evil drugs for life, new Dr. A had answers. And guess what? I'm not crazy. The pain was completely hormone-related, and the solution involves a hormone replacement-type compound (sort of like the opposite of birth control). And I am under strict orders to never ever ever overexercise or restrict to the point of losing my period ever again.
I'm kind of pissed off that every other doctor ignored my gut feelings and assumed that I didn't know my own body. But honestly, I'm not wasting any time on being angry or bitter anymore, because maybe now I can actually get my life back. Well, backtracking—this isn't going to be an instant cure, and the doctor told me it could take at least 2-3 months before I notice any difference in my pain levels. But when I asked him if I were really going to get better, given what all the other doctors said, he responded without a second's hesitation, "You're going to be totally fine."
Basically, Dr. A has made his life's work researching the kind of pain (hip, pelvic, lower back) that I have, and knows vastly more about it than 90% of the other doctors out there. I'm not going to start singing his praises from the rooftops just yet (at least not until my pain is actually better), but he seemed to know immediately what was wrong with me and how to treat it. Besides the hormones, I'm supposed to keep up with PT and use Valium (Kaylee's Little Helper!) as a muscle relaxant at night.
The other point Dr. A made was this: the problem was unquestionably caused by my anorexia. The several years I went being underweight and without getting periods threw my whole system out of whack so that my muscles atrophied, my nerves were damaged, and my poor body didn't really stand a chance. The absolute worst thing I could do right now, or ever, would be to start losing weight and digging myself back into that hole. The doctor was super encouraging and congratulatory about how far I've come in recovery, but really stressed the fact that I will always be vulnerable, and that I cannot ever let myself get sick again.
So, you guys, if there is anyone out there still struggling—whether it be with an eating disorder or pain or some other medical problem or whatever—and you haven't been able to find relief and the doctors aren't helping you, I'm here to say: hang in there. There is hope. I've seen over twenty doctors in the last year, and only TWO of them have done any good whatsoever. All doctors are NOT created equal, and it may take some digging to find a really good one. Only in the last month have I found any relief for my eyes, and only since yesterday for the pain, and I have come so close to giving up so many times. I can't tell you how many days I came home and crawled into bed and cried because I thought there was no end in sight. So, if you're hurting and you haven't found a solution, keep looking. Don't give up.
Anyway, sorry to bombard you with news of all my appointments, but I just had to share this—especially since I've subjected the blog world to my constant griping and whining about this for so long. Love you all very much.
- Wednesday: The ED doc was first—she asked me some really hard stuff that I wasn't really ready to talk about, and thus I started crying and couldn't really focus on what she was saying after that. Pretty much her only suggestion as far as the pain was to up the dose of my gabapentin, which I probably won't do because I'm a FREAK and can't stop worrying about my weight. Next was Dr. L, my psychiatrist, who normally never fails to make me feel better and understood and taken care of. She was as sweet and compassionate as always this time, but ultimately didn't really have any suggestions either. ARGH. I feel so lost.
- Thursday was the eye doctor. I LOVE HIM. My eyes feel absolutely fantastic. More importantly, I am finally rid of my evil glasses and am wearing contacts again for the first time in about six months. I was forcing them in for about a year before that, but they were always super uncomfortable. Sometimes I have to pinch myself to remember that this is real and my eyes actually don't hurt.
- Friday was...an adventure. I saw my pain doc (the nice one that I first saw back in October) at 8 a.m.—his research assistant told me that she was "hopeful for a couple of reasons" about me, and gave me another prescription to try. Then I had PT at 9, which was okay except that I'd walked from the hospital to the PT clinic and went into the session already hurting quite a bit, but PT Lady was super nice and understanding and made me feel better.
- And then therapy. My roommate came with me, which I finally agreed to after waffling on it for several weeks. She had first offered to come about a month ago when I was REALLY struggling and scaring her with how miserable I was. R seemed happy to have her there and it was a very interesting session—definitely uncomfortable and not fun at times, but ultimately productive, I think. R and I will have lots to talk about at my next solo appointment in January but for now, I'm happy to be on therapy-vacation.
- Oh yeah, and then late Friday afternoon I had to run back to the eye doctor for a quick emergency checkup because my right eye was hurting and freaking me out, but apparently I am a paranoid loser because my eye was just fine. At least Dr. Q was nice about it and didn't make fun of me.
Does anyone else sometimes forget that I'm a full-time student too? I certainly do. So looking forward to the day when I can have hobbies instead of doctors' appointments.
I am writing this from my parents' house after getting home from College City on Saturday night. I've been meaning to post a real update on all those appointments that had me so freaked out (and they did not disappoint!) but I'm too lazy at the moment; maybe later. Suffice it to say that I had seven appointments in three days last week, so I am completely worn out from seeing doctors and am very happy to be home and have a break from it all until January 3.
Even though I'm home, I actually still have a term paper due tomorrow so my vacation hasn't technically started yet. And then once I finish that paper, I have tons of thesis stuff to work on that should keep me busy throughout the whole break. That being said, I am having a reeeally hard time motivating myself to do schoolwork when it feels like Christmas-mode around here. We put up our (fake) tree last night, and my dad and I went shopping for presents this morning.
I am still kind of shaken up about the shooting. I have some connections to Newtown from when I was a kid, and it's eerie to think that something so horrible could happen there. Those poor, poor kids. My mom is a teacher and I was terrified about letting her go stand in front of a classroom this morning.
Food stuff: I'm trying hard to stick to my usual intake, even though routine changes are always golden opportunities for restriction. I tried on an old pair of jeans that have been too baggy on me since high school, and they fit almost perfectly. That made me want to rip my hair out at first, but then I realized that maybe they didn't look half-bad. Maybe.
Hope everyone's having a great December so far. I'll post more doctor/therapy details soon.
My heart is completely broken for those beautiful little kids in Newtown. And I am angry. Something needs to change. I don't know what the solution is, but there simply cannot be guns on the streets, and there cannot be such emotionally disturbed people going without care.
Ugh, I am so anxious right now—I have appointments with both my ED doctor and my psychiatrist this evening. Even though I definitely need to see both of them, I'm just so not up for talking about all my shit right now. Plus, I don't know what to eat or drink today, because I don't know whether or not the doctor is going to weigh me. Obviously I should eat and drink my normal meal plan, but.......you know.
I feel fat. It's silly to feel self- conscious about my weight in front of my ED treatment team, but that's just how it goes.
It shouldn't be this nerve-wracking to see the doctor. I see doctors all the damn time. I just wish they could fix me instead of passing me off. On the plus side, both Dr. C and Dr. L are wonderful and nice and won't make me feel bad like some other doctors who shall remain nameless (ahem gynecologist, first three ophthalmologists, and pain specialist). Still for some reason I'm super duper stressed out about seeing them.
ARGH damn this eating disorder. Off to eat breakfast now.
I've had to make quite the to-do list for the week ahead, between studying for finals, writing my papers, working on thesis stuff, dealing with application stuff, and juggling all of my doctors' appointments. I have six (yes, SIX) appointments Wednesday to Friday—ED doc and psychiatrist on Wednesday; ophthalmologist on Thursday; and pain doc, PT, and therapy on Friday. Whew! I didn't exactly plan things that way, it just sort of worked out. It's reading week so I don't have class, plus I'm leaving for winter break on Saturday, so I guess it makes sense to squeeze them all in.
I am a little nervous about heading home. It's partly because last year, I sank into a pretty horrible depression over winter break. My anxiety was also completely out of control and I was basically incapable of functioning like a normal person. I keep trying to tell myself that I'm in a different place now compared to back then. Last December, my pain issues had just started to kick in, and I was terrified about what was happening to my body. I saw two doctors here in College City before going home, and then two more doctors in Home City, and none of them could figure out what the hell was wrong with me. I wasn't eating well, barely sleeping, crying all the time, and having near-panic attacks on a daily basis. Now, I'm not feeling a whole lot better physically, but not knowing what was causing my ever-intensifying pain was the scariest, most horrible experience I've ever been through, and I am so thankful to be past that. I am also having regular periods now, which wasn't happening a year ago, and my eyes seem to be maybepossiblyhopefully on the road to recovery (knockonwoodknockonwoodknockonwood). Plus I am on an anti-anxiety medication that has been incredibly helpful. My anxiety, which was very quickly destroying my ability to function last year, is literally not an issue at all anymore. So maybe I really am in a better place, even though it doesn't always feel like that.
My body image is, yet again, in the damn gutter. Really wish this weren't so important to me, and that I could have some other, more productive, less shallow obsession. I've always had a hard time accepting my body (goes back to those dreadful, traumatic, pubertal preteen years) so it's unclear how much of this obsession is a symptom of the eating disorder, and how much is just my own lifelong insecurity. Not sure if it really matters at this point, since either way, I feel terrible about my body. I brought this up with R last week, and he said something like, "But XXX [my weight] is perfectly healthy for your height." NOT HELPFUL. My body feels like a fat suit that I can't wait to take off.
That being said, my mood has been up a little bit the past week or so, which is nice. I find it hard to believe that I might have some control over my mood and outlook, but sometimes I do really just need to suck it up and remind myself of the good stuff, and take some initiative about having a positive attitude.
Happy end-of-the semester to all the students reading, and happy December to everyone else!
I am heading home for winter break exactly one week from today. This semester has gone by insanely fast. I say that about every semester, but this time I swear it's true. I have a bunch of essays and two take-home exams due over the next week, and then I'm DONE. Except for the truckloads of thesis and grad school stuff that needs to get done over break, but at least I won't be graded on that.
Therapy went a little better than usual yesterday, probably because I was in a little bit better of a mood and wasn't opposed to, like, using my words and talking like a grown-up person. Plus, I had some good news about my eyes for once, so we started off on a more positive note. R said that he had brought me up (anonymously) with a couple other therapists to get their opinions and perspectives on the world's most difficult patient, so maybe that helped too. I'm not sure. But for whatever reason, I didn't spend the hour pouting and sniffling away. Progress!
He also mentioned that he had spoken to the MD in his clinic, who wants to get copies of all my records and hopefully help me figure out a more comprehensive plan of action. I see tons of specialists (ophthalmologists, gastroenterologists, gynecologists, pain docs, surgeons, etc.) but no one really seems interested in the full picture. I've always felt in my gut that all my health issues have something to do with my anorexia, being amenorrheic for years, and some fucked-up hormone action—the nature of which I am fully ignorant and unqualified to determine. Being the control freak that I am, of course I've done tons of research, and have thus discovered that** (a) tear production is significantly correlated with hormones; dry eyes are super common in postmenopausal women and women on birth control. The first thing every eye doctor asks me is, "Do you get regular periods?" and then "Are you on birth control?" (b) The type of nerve pain that I have is related to connective tissue damage, which is—you guessed it—affected by hormone production.
So basically, the moral of the story is, something funky is going on with my body and I.want.answers.dammit. So I'm having all my records sent over to Dr. C and hopefully we can get a plan in place to start dealing with the root cause of everything. Not going to get my hopes up—I'm already seeing lots of very good, qualified, smart doctors and it would be silly and arrogant to assume that they've all missed something huge and major. But I still think it'll help to get a broader perspective on things, especially from someone who is fully aware of my history and current level of misery.
** Bear in mind that these are super simplified explanations because I am NOT a scientist and do not have the education or language to discuss these in detail. Most of my info comes from reading studies online and pestering my doctors. Anyone feel free to elaborate on or shoot down any of these theories.
I have an exam tomorrow morning that I desperately do not want to study for. Hi Blogger!
- My weight is scaring the poop out of me. I can't handle it going up anymore. I've been on New Drug (gabapentin) for about two weeks now - a fairly low dose, but I am absolutely paranoid about continuing to balloon up. I think my weight is hovering around the same number since then, but whenever I'm gaining, the scale tends to make random jumps every few weeks and I am terrified that I'm due for another one. Unfortunately, I haven't really noticed any difference in my pain levels since switching either—really hoping this isn't another case of the Chub Drug with all the side effects and none of the benefits.
- I hesitate to say this because I'm superstitious and don't want to jinx it, but I'm on Day 5 of having these new contact lenses in and my eyes still feel wonderful. It's the most bizarre thing ever. Ophthalmologists have been telling me all year to not wear contacts because I'd do more damage by having a foreign body in an already-compromised eyeball, but for some reason this works. My roommate is getting a kick out my amazement—I send her about ten texts a day marveling at how un-terrible my eyes feel. Usually they hurt so much I can barely keep them open, but not anymore! I've challenged her to about twenty staring contests and she keeps declining.
- My thesis advisor really is a saint. He's writing me a letter of recommendation for an application that I somehow thought was due in March, but discovered is actually due January 3. I ran to his office yesterday in a panic and was all like "OMG Dr. K I'm so sorry but I'm a spaz and can't read instructions and the application's actually due in a month OMGOMGOMG." Long story short, he will have the letter in by the deadline. Additionally, he surely thinks I'm a lunatic.
- Then, I realized that I just literally had not done the homework for my research seminar. It just didn't even occur to me. We have these little papers due every week, and we are supposed to submit them online by Sunday at 5 p.m. So at 3 p.m. on Tuesday (the class starts at 4), I pounded out the two short essays in about twenty minutes and fired off a hysterical e-mail to the professor that went something like "OMG I COMPLETELY FORGOT TO DO THE HOMEWORK ON TIME, I HAVE NO IDEA WHAT'S WRONG WITH ME, YOU SHOULD PROBABLY TALK TO MY THERAPIST." My professor wrote back that night, "Don't worry, Kaylee, and thanks for letting me know. You finished the semester with attentiveness, poise, and grace." LOL
Despite all the crap that's been weighing me down for the past year+, I am finally taking serious, concrete steps towards planning for my future. Many many times over the past several months, I've refused to even think about this stuff because I couldn't imagine getting through the next hour or day or week, much less two years or ten years in the future. It was just depressing to think about all the stuff I could be doing, and how my health was ruining any hope of that, and how maybe it just wasn't even worth trying anymore.
So this morning, for the first time in a long time, I'm feeling a smidge hopeful - excited, even. As I'm pounding away at grad school application essays and tweaking my resume and nailing down letters of recommendation, I'm seeing fleeting glimpses of my old ambitious, hardworking, persistent self. I've missed her a lot, and I really hope she sticks around.
Wow, December already? Sheesh, not sure where this year has gone. I spent yesterday driving in circles - appointment with R in the morning, and then an emergency appointment with my ophthalmologist in the afternoon. I don't want to jinx it, but New Eye Doctor may or may not be a miracle worker. At first, he was booked all day and I had to schedule with a different one, but then my regular doctor said that if I could wait until he got out of surgery, he would see me. So I had to wait over 90 minutes, but whatever - small price to pay. He worked some voodoo eyeball magic* and today, my eyes feel better than they have in MONTHS. Let's just hope that lasts beyond today!
School is starting to kick my butt a teensy bit. I always forget how much the last two weeks of the semester suck. I will be so happy when this stupid stats class is done - how do professors get away with assigning both a final exam and a final term paper? Since when is that a thing? Dude, pick one. Think of your poor TA who has to do all that grading, not to mention me.
I was a little ashamed of myself in therapy yesterday. Basically, I just put zero effort into engaging whatsoever and shrugged everything off and was generally a big fat baby. I was having trouble articulating stuff, since I feel like Dr. R has already heard it all before. Why harp on the obvious, right? Then I noticed the writing on his little whiteboard from the previous patient. It looked like they'd been mapping thoughts, and it went something like this:
car battery dead ---> starting to go to "dark place" ---> think about cutting ---> want to eat ---> but if eat, will have to purge
I suppose I should have been sympathetic. Whoever this patient was, it sounds like he/she was miserable. But all I could think was, really? Your car battery was dead? And that puts you in a "dark place?" REALLY??!!
I don't know when I turned into such a brat, but I couldn't (still can't, really) muster an ounce of sympathy for this mystery patient. Wish I were a kinder, more compassionate person, but I just can't. I'd give an arm and a leg to have a fucking car battery be my biggest concern.
Ugh, I really want to delete that last section. I feel like a horrible person. Don't hate me, guys, okay? I'm trying really hard to be better, to not turn into a completely ugly, terrible, bitter person.
In an attempt to get that ugliness out of my head, things that are going well:
- the aforementioned eye breakthrough
- thesis stuff - plugging along, making progress
- When my parents were here last weekend, I brought them to the food pantry where I started volunteering over the summer. School has kind of gotten in the way and I hadn't gone in several weeks, but then I was reminded of how amazing and fulfilling it is to do something for others, for a change.
* Not actually magic - he thinks that my problems may be nerve-related, so he had me put in "band-aid contacts" - basically just slightly bigger lenses that are supposed to protect the surface of the eye until the nerves have a chance to heal. The only thing that scares me is that these contacts are continuous wear - meaning, I leave them in for 1-2 weeks straight, even at night. This goes against EVERY instinct I have about wearing contact lenses - has anyone ever tried this?? I slept in them last night and felt totally fine - a little dry, but overall my eyes feel 1000 times better than they have in a long time.
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.
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.
- 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.
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.
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!
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.
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.
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.
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.
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!
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!
I actually didn't even realize today was Halloween until I looked my calendar just now. It's weird because Halloween used to be my favorite holiday by far, partly because it also meant my birthday was close. Speaking of, I'm getting SO old. Does 22 make me a grown-up? Sometimes I'm super independent and super self-sufficient, and sometimes I'm like, holy fuck when did I stop being a kid and WHY DIDN'T ANYONE WARN ME THIS WOULD HAPPEN?
My biggest wish for my birthday (besides a new body, new eyeballs, a new metabolism, a new therapist, and world peace) is for my darn phone to get here. My dad ordered one for me last week (thanks Dad!) after mine took an unfortunate swim in the can, and it was supposed to arrive yesterday but got delayed - mostly likely because of Sandy. Now, I'm not going to get all bent out of shape and throw a fit about it, since I'm pretty lucky that a delayed package is the ONLY personal damage I've suffered from the storm, but it's getting seriously inconvenient to be phoneless. All I can say is thank God for the internet.
Anyway, I'm trying to stay busy and not get totally bogged down with depression. I'm still crying a fair amount, although I can usually pull it together in time to take care of real life. My weight is really really really really bothering me, but I'm doing okay with telling myself "You must eat. You need food. This isn't forever."
I had a meeting with a woman on campus the other day and I swear, she must have slipped the phrase "I have a weight problem" into the conversation at least six times. Can I buy you a coffee, Kaylee? How about some breakfast? Oh no, none for me. I have a weight problem.
She was perfectly lovely and we had a great conversation about unrelated things for work, but this woman was positively DETERMINED to convince me of her "weight problem." She wasn't even overweight, so far as I could tell. She looked perfectly average and healthy and happy. I kind of wanted to throw out an I hear ya, sister! I've got quite a bit of a weight problem myself! LOL. If only she knew.
So, that's my lame and unexciting Halloween update. I didn't have a costume this year, although I was downtown for the BIG College City Halloween extravaganza over the weekend and it was madness, I tell you. MADNESS. It troubles me to see adults acting like frat boys. Really, I fear for us all.
Who's ready for something besides me moping?? I really hate having so many negative posts in a row all over my blog. Sometimes I forget about the parts of my life that don't involve me crying, whining, writhing on the floor in misery, contemplating jumping out my second story window. But there are a few! Behold, fellow bloggers:
- I am an IDIOT and dropped my phone in the toilet the other day. Don't you fret, the toilet had not yet been used, but fishing it out was still pretty gross. My friend assured me that her phone had survived a similar plunge but alas, mine was totally fried. I ordered a new one but it won't get here until Tuesday. Sheesh, I never realize how dependent I am on my technology until it betrays me. My computer broke this summer and I was a wreck for the 24 hours it was in the shop. At least that one wasn't my fault, whereas the Phone Incident was just humiliating. I FORGOT IT WAS IN MY BACK POCKET. SUE ME. Did I mention I'm an IDIOT?
- I skyped with my parents earlier today. They are ridiculous. My brother and I always used to wonder what they would possibly do without us home to keep them busy, but we shouldn't have worried because Mama and Papa Bear have taken to the empty-nest situation just fine. My dad now fancies himself a semi-professional birdwatcher/nature photographer/Davy Crockett-type while my mom skips along beside him oohing and ahhing over the leaves and stuff. Literally every other day, my dad sends me photos of their outdoorsy exploits and I have to reply like "Oh wow, Dad, that's great, another brown bird." "Oh look, another one." "Hi Mom. Yes, the colors are very nice." Then they fight about politics, which is silly because I'm pretty sure they're on the same side. Then they make up and go to the movies.
- Oh my God, you guys, this one isn't funny at all but I almost killed a kid the other night. I was giving my friend a ride home from campus and I was so focused on trying to make a left turn into traffic that I didn't see the kid walking from the other direction on the crosswalk. (In my defense he did NOT have the walk signal.) So I started to pull out into the road and my friend flipped a shit. He is normally a really chill, calm guy, but apparently I freaked him out because he grabbed my arm and started yelling "KAYLEE THERE'S A KID CROSSING! WHAT'S YOUR PLAN? WHAT'S YOUR PLAN??" so I slammed on the brakes and thankfully the pedestrian was totally unharmed (and unaware, I'm pretty sure) although I think both my friend and I both suffered minor whiplash. Whoops!
- Not five minutes later, some imbecile driving a big SUV swerved into my lane and almost hit me. I had to pound on the horn and slam on the brakes again. By the time we got home, my poor friend was curled up in the passenger seat looking ready to puke, clutching his stomach and whimpering and trembling and stuff. Guys! Stop! I'm a really good driver! Shut up.
Therapy was really hard this morning. I had promised myself to be honest with R about how depressed I've been, but of course I still found it near impossible to choke the words out. So I started to cry instead, and he worked it out anyway. Go figure.
I think R just doesn't know what to do with me anymore. (Same with my last three eye doctors and five gynecologists, but I won't take it personally.) He asked if I feel better after talking with him, or if I ever think about stuff during the week that I want to bring up in therapy, but really, I don't. Mostly I just feel sad and hope that R will have some suggestions to make me feel better. But then I get to my appointment and don't know what to say other than basically: "I don't feel good." Partly also, most of my problems are related to physical stuff right now, so talking about my feelings seems kind of silly and pointless.
On a slightly better note, I also saw my psychiatrist this week - Dr. L. She's wonderful. She always reviews my file and talks to R and J and does some outside research on stuff that might help me before appointments. We talked about switching my pain meds because I am not handling the weight gain side effect well at all. No, I'm not overweight and no, I'm not gaining at a medically dangerous rate or anything even close to that, but it's happening too quickly on not enough food. The bottom line is that I simply can't cope with the meal plan and the medication-induced gain at the same time. Just can't do it.
Anyway, the drug has also made my eyes infinitely worse, and I'm pretty much sleepy and sluggish all day long. Dr. L is going to get in touch with my other doctor who prescribed it to talk about switching me to a different brand which hopefully will have fewer side effects. Have I mentioned I hate drugs?
Things are just really hard. I'm trying not to get so down all the time, but it's a struggle. It scares me to be crying all the time and feeling so out of control. I even skipped class the other day because I was feeling so crappy. You guys. I don't skip class. But I just couldn't stop crying long enough to go.
I want so badly to have a normal body and a normal life. I just feel like if I could have that back, then everything else would fall into place. I feel like I could handle anything after this. I just don't want this anymore.
Good news first: negative for Sjogren's and lupus. Whew. As for the rest of my bloodwork, I was low-ish in iron and vitamins A, B, and D, but not officially deficient in anything. The bad news then, I guess, is that I have pretty much no more information about what's wrong with me. Part of me was kind of hoping to have some (treatable) red flag pop up in my bloodwork that would shed light on everything that's been happening. No such luck, unfortunately, and I'm pretty much back where I started.
I don't really have anything else to post about. I'm just sad. I want answers. I want to feel better. I'm trying so hard to eat well, but this damn medication is making me fat. I know I promised you guys I wouldn't whine anymore...oops. Last week I was feeling way more positive and less down-in-the-dumps, but now things just seem crappy again. It's not even my mind that's pooping out on me this time, it's my body. I hurt and I'm tired and I can't see. Things aren't getting any better, and I really can't imagine living the rest of my life like this.
I've never been suicidal (like, not ever, so nobody get freaked out or anything) but sometimes I think about dying. Like, what would happen? Would that make things suck less? No worries, I'm not going near any afterlife/heaven/hell/reincarnation/etc. theological debates with a fifty-foot pole, but sometimes I wonder what happens next and whether things would be any better for me. Anytime the thought of dying crosses my mind, though, I start thinking about my parents, and my brother, and my roommate, and my best friend P back home, and my uncle M who used to drive me to Dr. R's office last year before I got my car. And then I think about my car, and wonder, who would drive him if I weren't there? (Yes, my car's a dude. You can call him Sam.) Who would pack up all the books in my trunk? (There's a small library back there. Sam's a trooper.) What would my thesis advisor do on Mondays at four o'clock? What would R do on Friday mornings? And what would he do with my file, since he and J wouldn't need it anymore?
I'm not gonna kill myself, pleasepleaseplease no one get worried or scared or anything silly like that. Sometimes I just find myself wondering about this stuff a lot. I'm really scared of feeling terrible forever.
I just wanted to thank the people who made suggestions on this post. I was going to respond to the comments but never know if anyone actually goes back and reads them. Just to keep you all in the loop, I got tested for vitamins A and D, iron, and a couple autoimmune diseases (pleasepleaseplease everyone keep your fingers crossed I don't have something scary and incurable). I won't get the results until next week, so for now I'm just trying to chill out and not fear the worst.
Anyway, it helps SO MUCH to hear stories about how drastically everything improved once you got totally weight-restored and on a regular eating plan. I am so incredibly glad that so many of you are doing well! You guys are the best!
Country music. My roommate got me hooked on a couple radio stations. I am really a city girl at heart and have zero emotional connection to, like, farms and cows and stuff, but I do enjoy a fun feel-good country song now and then. But I have some conditions: 1) Must be upbeat and have a sense of humor, nothing slow or depressing. 2) Not too twangy. Banjos only acceptable on limited occasions. 3) Quit talking about your damn TRUCK. I don't CARE.
Eucerin moisturizing cream. This stuff is a godsend in the winter (or anytime, really, since my hands seem to repel moisture). It's super thick and makes your hands a little slippery for a few minutes, but then your skin will be soft and lovely.
Sensodyne toothpaste. Over the past couple years, I started noticing that my teeth were super sensitive to temperature and they hurt when I bit into something crunchy. My dentist suggested I switch from regular old Crest toothpaste to Sensodyne, and I've noticed a HUGE difference. Peanut butter. This needs no elaboration. My uncle is deathly allergic and I cry for him, on occasion.
And, in a related vein, Things I Am Eating:
Cake. Well, I had one piece at my friend's apartment one night last week, but it was totally unplanned and calories totally unknown.
Real bread. Like, the thick hearty kind with grains and seeds and stuff. None of the low-cal fat-free cardboard crap that disintegrates in the toaster. Been there, done that. Yuck.
Muffins. Again, it was just one muffin, but still a big deal for me. I was in a coffeeshop and was running a little low on calories for the day, so I just decided, why not? It replaced my regular boring snack, so a big change in routine as well. fatsaregoodfatsaregoodfatsaregood
Peanut butter. I know I already said this. Shut up. Your argument is invalid.
I may be grasping for straws here, but recently I've been wondering if something simple like a long-term vitamin deficiency is contributing to a lot of my health problems. Specifically my eyes—I went back to my doctor on Monday for a follow-up after being on a steroidal antibiotic for two months, plus the other couple drops I'm using, and there was zero improvement whatsoever. Literally none. My eyes are about as bad as they've ever been, and it's really wearing me down. Direct quote from the ophthalmologist: "Your eyes just don't...work. And I'm out of bullets."
So, basically, he's stumped. He offered to refer me elsewhere, which I suppose is a nice way of passing me off because he has no clue what to do with me. This would be frustrating on its own, never mind the fact that I'm also suffering from pretty debilitating hip and pelvic pain on a daily basis as well. Oh yeah, I forgot to mention I was also diagnosed with IBS over the summer, although that may have more to do with refeeding belly/bloating than anything else.
Okay, cutting the bitterness now. Really sorry to whine about this all the time, I'm gonna try and tone it down in the future, but I'm stumped and frustrated and really depressed about the whole situation. Anyway, my point was that I've been doing a little research online (I try not to, because it generally just makes me freak out) and I'm wondering if my body is still just woefully out of whack. Regarding my weight/nutrition, I am basically at the lowest healthy weight according to the charts, although my treatment team's goal weight for me is XX lbs higher. I've been pretty significantly underweight for the better part of three years now, and probably undereating for longer. Even now, I'm eating an okay number of calories, but not a huge amount by any means, and my diet is extremely limited. I take calcium supplements, fish oil pills, and a multivitamin, although I don't always remember. Going to make that a priority from now on.
I just refuse to believe that at (almost) 22 years old, my body defies all modern medical knowledge. It has been my experience that specialists often focus ONLY on their area of expertise - aka the eye doctor ONLY looks at the eyes - and fails to take into account the fact that I also have multiple other rare, chronic conditions going at the same time. So now, I guess, it falls on me to keep the big picture in mind. Does anyone know how to get tested for vitamin deficiencies? I'm seeing my GP tomorrow and want to have some specific questions ready for her.
Wondering if anyone has had experience with this, or has any other suggestions. Thanks, love you all so very much. I promise to be more interesting/entertaining/positive next time.
Oh hey, look, another New York Times link: the Life, Interrupted series by Suleika Jaouad is an absolute must-read. The author is a woman in her twenties with cancer. All of her columns are good, but the first one especially captures the unique injustice of being a young person with an incapacitating, life-threatening illness. I am so rooting for this girl to get healthy. Also, she seems really cool and I want to be friends with her.
Hey all—it's been a really busy week and I'm just now coming up for air. Pretty sure I semi-bombed one of my exams yesterday but whatever, it's done. I really need this weekend to just like decompress and get myself organized and catch up on all the stuff I put off while in frantic cram-mode this past week.
On the medical front: My newest doctor referred me to a PT clinic, but they couldn't fit me in for almost a MONTH. Sheesh. At least I have other appointments to keep me occupied until then. Eye doctor on Monday - everyone keep your fingers crossed for good news. I saw R this morning, which was lame, until I stopped being difficult and decided to actually TALK. Hmm...
Something that came up was my appointment with J last week. She's normally chipper and perky and positive, but this time I left her office feeling negative and defeated. She seems to think I'm still stuck in ED-Land, totally opposed to any and all forms of recovery. I don't know how else to say this that will convince people: I am trying so hard with food. I really am. I want to get better. Seeing Dr. P last week really gave me a big boost in motivation. I want to feed my body the things it needs to repair itself. Body image is still ehh, but I'm getting there.
The hardest part, really, sounds stupid but be gentle: I just don't know what to eat. I am so dang used to eating the same thing every day, to negotiating down wherever I can, to scraping by on the minimum, that when I get to the end of the day and realize I'm down XXX calories or whatever from my goal, I just don't know what to do. Eating too much at once feels like bingeing (which is silly because it's not, and I've never binged in my life) but I'm not going to get anywhere by eating skimpy little rabbit food snacks, you know? But then when I think about beefing up my meal plan, everything seems unappetizing or too much or not right etc. etc. etc. They're all just lame default ED-mode excuses, I know, don't be triggered or mad or disappointed in me, but the mindset is still weirdly hard to get past.
So, I guess there's a bit of a disconnect between my internal motivation and my external behaviors. (What am I now, a psychologist?) It's understandable that J would get frustrated when I say that I'm open to increasing my meal plan, but then shrug off every calorie-boosting suggestion she makes. But for the most part, I feel like I have increased and I have gained weight. I've followed through more in the past three months than at any other time in the full year I've been seeing her. Go me!
I expressed this to R today, and he did some cheerleading that actually did help a lot. Note to doctors everywhere: Kaylee responds to positive reinforcement only. Scolding just makes me want to curl up in a ball and never come out. I think that's why Dr. P was such a breath of fresh air for me—he kept saying "You're doing great, you're doing great," and it made me want to do everything in my power to keep moving forward.
My mom and dad were in town this past weekend and I was so happy to have them here. The last time my mom was in town, I spent the day freaking out and crying and generally being a big fat baby, so this visit was a nice change. My dad actually hasn't been to College City since dropping me off at the beginning of my freshman year when I was still totally lost and intimidated. It was kind of fun to show him around campus and the city, bring him to a famous restaurant, etc. I'm probably more of a mama's girl at heart, but I do love my daddy a whole lot and he definitely spoils me rotten.
Meals were okay. Snacks, not so much, but I think I made up for the calories by having bigger meals. I asked my mom one day if she thought I'd gained too much weight, and she sighed and said no, of course not, you don't look like you've gained anything at all. So, I guess that was nice to hear. I GUESS.
We ate out for lunch and dinner on both Saturday and Sunday, and I didn't restrict or freak out or anything. I'm feeling motivated again—remember the wonderful doctor I mentioned? Well, the part I forgot to tell you guys is that he was much more optimistic than anyone else I've seen. Basically, he thinks that all my body failures are totally related to being underweight, and that things should definitely improve with better nutrition = weight gain = stronger immune system, tissues, muscles = less body failure = MUCH HAPPIER KAYLEE. I was so freaking happy to hear that, I wanted to give Dr. P a big hug. This was a huge boost, especially after my last doctor told me that my pain is probably permanent and can only be managed with meds. But Dr. P went over my whole history and was way more optimistic. He kept telling me that I'm "doing great" and stuff, and I really really really needed to hear that. Next step: he referred me to a specialized physical therapist, so stay tuned.
Anyway, that gave me a big motivation boost going into the weekend, and beyond. It's really exhausting to have this invisible pain, the constant nagging reminder that I abused my body for so long and it just couldn't take any more, but all I need to know is that it will get better. I can't be skinny and healthy, I can't restrict and be healthy. I just can't. And that's okay with me.
Another fun tidbit of the weekend: my mom discovered that she somehow accidentally created a Facebook account in 2009 and has no idea how it happened. Oh, Mom. If you happen to see her approaching, lock up your technology. Bad things happen when she gets too close.
My parents are coming to visit this weekend, which is exciting and a little stressful. First of all, I have truckloads of schoolwork, so I won't have a ton of time to spend with them Another issue is meals - they aren't staying in my apartment, so we're going to end up eating a lot of meals out. I am generally okay ("okay" being a relative term ) with the occasional meal out here and there, but multiple days of lunch/dinner out tend to really mess with me and cause a ton of anxiety.
Food has been kind of weird for me lately. I am still obsessive and irrational and super rigid, but it feels different now, like it changes daily and I am constantly having to reevaluate how I feel about recovery and, therefore, what I should eat. I seem to alternate between two opposite poles. Sometimes I spend an hour in front of the mirror despising my body and convincing myself that any recovery-minded notions are insane because I'm FAT and need to lose weight fast...and sometimes I get super motivated to feed my body what it needs to reach its healthiest state and start repairing all the damage of the past few years. I try to hang onto the latter one all I can, because it feels good and makes eating a whole heck of a lot easier. But gosh darn it, my body image is so bad. It's not possible for me to actually look as fat as I think I do, is it? I want to pull my eyeballs out and try on a different pair, just to see what the world around me actually looks like.
Enough of that silliness. I saw a new doctor* this morning. And he was WONDERFUL. I know that I bitch and moan about how doctors suck and such all the time, but I've also had a few gems. This guy, for one, plus my gastroenterologist, my psychiatrist, and my ophthalmologist. Wish I wasn't anonymous right now so I could give you all recommendations (as well as tell you which ones to avoid!!).
How 'bout that debate? I won't go all political on you, but I do love a good debate. Too bad this one was b-o-r-i-n-g. YAWN. Except Obama's zinger at the end about Romney's busy first day in office with all the angry pro-Obamacare Democrats, that made me laugh.
In other current events, I'm a little freaked out about the peanut butter recall. Peanut butter makes up a not-insignificant portion of my daily intake and I'm not sure what I would do without it. I mean, I suppose there are other kinds of sandwiches out there...but I don't do variety, remember?
Okay, I guess I should get back to my truckloads of schoolwork. Take care everyone, happy Friday!
*If anyone's counting, my medical team currently includes nine doctors. I've seen way more over the past year or so (probably around 20?) but these are the ones I see at least semi-regularly.
Earlier tonight I was reading an article for one of my classes about the US health care system. A big part of it was how people with mental illness really get shafted, both in terms of the care they receive and the amounts they get charged for it. NEWSFLASH. Who's surprised? Anyone? Are you all taking notes?
Anyway, this won't be a rant about that. Too tired, not in the mood. What stuck out to me in this article was the statistic that almost a full 80% of adolescents with a diagnosable mental illness go without treatment. There were a lot of reasons given: poverty, no access to transportation, no qualified local clinicians, lack of parental support, lack of insurance coverage, etc. etc. but really, there are probably a million reasons. And even if a kid leads a totally privileged life and has every opportunity imaginable, that doesn't ensure he'll get treatment.
Like me: I hated my body from the minute I started puberty and by the time I was thirteen, I was full-on restricting and running excessively. My weight dropped XX pounds in 2 months. My mom went on a work trip for two weeks, and came home to find me positively skeletal. And what happened then? I got a few lectures at the dinner table, a quick trip to the pediatrician for labs and an EKG, and that was about it. Over the next year, I fumbled through "refeeding" myself, gained back up to a healthy weight, and promptly dropped into one of the lowest depressions I've ever experienced.
I've gone back over that year a million times in my head. What if I'd piped up during one of those lectures at dinner and said "I HEAR WHAT YOU'RE SAYING, MOM, BUT IT'S NOT WORKING AND I'M NOT OKAY." What if someone had admitted that it was gotten out of my hands, out of my parents' hands, and that we needed help? What if I'd gone to inpatient and gained weight on a proper, structured meal plan rather than the weird, chaotic, completely disordered way I did it myself? What if I'd addressed the issues for real back then, rather than muddling through the next six years in a fog of subclinical disordered eating patterns, ritualized overexercise, and intense weight-centric self-loathing? What if I'd actually been treated for the anorexia and depression, rather than being left to believe that there was something fundamentally, horribly wrong with me? What if?
I'm not blaming anyone, and I'm not bitter. I'm just sad. Sometimes I want to go back and do it all over—do it right this time. To let my body develop the way it was supposed to, rather than manipulating and abusing it until the poor thing didn't know which was up. I wonder what I'd be like, whether I'd be healthy and happy and normal. I wonder how much I'd weigh. Just kidding! Mostly I just want to go back and give my old self a hug.
Quick Saturday update! I'm getting more than a little overwhelmed with all the schoolwork I have, so I probably shouldn't be blogging right now...but I figured I haven't written in a few days and you must all be dyyyying to hear from me.
Anyway, I'm busy. Turns out my honors thesis is way more work than I had anticipated (I'm dumb) and I'm probably taking one too many classes this semester. The rundown looks something like this:
- Classes A and B are both super interesting and fun, but have tonnnns and toonnns of reading. I've already filled two 1-inch binders with articles from A. Sorry, trees!
-Class C is a math class that I need to fill my core requirements. I. Am. Not. A. Math. Person. The only numbers I've used in four years have been calories and pounds. Also, I thought this class was supposed to be easy but it's NOT. Hey there, differential equations. I don't recall enjoying (ahem understanding) you the first time around either.
- Class D is more more reading and weekly papers.
- Class E is a required research seminar for everyone in honors. It's interesting, but the textbook is 1,400 pages long. Need I say more?
- And finally, my thesis. It's only just now dawning on me how huge of a project this actually it, but I'm really excited about it. My adviser's awesome and makes me feel smart and engaged. I am starting work on the actual content of the paper this week (as opposed to just the background research I've been doing thus far) and I am super pumped about it.
Along with the classes, I have my job with the communications department (about 5-10 hours per week, super flexible though, which is nice), I'm on the exec board for Club X, and I tutor for Club Y.
Right now, I'm trying really hard not to let myself get bogged down and overwhelmed with the work. I'm super OCD about grades and an A-minus tends to induce tears, but this semester I really want to keep some perspective. My body (not to mention my mind) has been through hell the past two years, and I want to be proud of myself for even surviving, let alone being in school. I was at a bar last night with some of my friends, and two of us were talking about how we should be at home because we had so much work to do, and then kind of made eye contact and were like, "What? No. No more school-talk."
Grades are important, I know, and I'm going to put my all into doing as well as I can, but I'm also not going to beat myself up if there's a B on my transcript. Shit happens, you know? I'll get through it, and I'm gonna be okay.
I know I've griped and groaned about this over and over and over and NO ONE wants to hear about it anymore, I know, I'm sorry, I hate to go here again.....but my body image has hit new lows. I know I said it was bad before, but now it's really really bad. I can't stand the sight of myself, or the feel of my clothes, or stepping on the scale. I tried not weighing myself this morning, but then I cracked and gave in, and ended up miserable about the number anyway.
My weight is the highest it's been since April 2011, and I am not.coping.well. I cry all the time about how fat I'm getting. I haven't slashed my intake or taken up marathon training or anything, but the little stuff is starting to happen again. Little stuff like not eating all the crusts of my sandwiches, leaving bites of dinner on my plate, etc. Little stuff that was starting to seem silly and fade away as I slowly gained weight over the summer and loosened up on some of the food rigidity. I'm not doing anything that's going to seriously affect my weight at all, but the restrictive, punishing mindset is kicking in.
I've weighed more than this before, so it's not like this is an lifetime high for me. And I'm not overweight, by any means. Maybe it's because the gain is happening more quickly than I'm okay with, or maybe because it's happening at least partly outside my control with the medication, or maybe I've just spent so much time at the lower weight that I don't remember what this size feels like. Maybe it's because I'm not working out at all right now, and the last time I weighed this much I was running and biking a lot so the muscle-to-fat ratio was different. It's all relative, I suppose. Once upon a time, I would have been perfectly happy to be this weight. At other times, I probably would have been suicidal.
I have no plans to starve and lose all the weight I've gained over the past few months, but I'd be a lot more okay with the gain if my body were actually starting to feel healthier, which it's not. I thought my eyes were doing better, but they've been hurting a lot again the past week. My skin is dry and gray, and my hair is still coming out. It's hard to love a body that's doing everything it can to fuck with you. I just want it to cooperate, for God's sake. Trust me, Body, damn it! I know that isn't fair of me to ask anymore, but I want so badly to do it right this time around, I'm so ready, and I feel like my body has finally given up on me.
I want to be well, but I don't want to be fat. Hell, it doesn't even matter what the reality is, I just don't want to feel fat. There's got to be a way to have both, right? A way that doesn't involve starving, of course. At therapy last week, R told me: "Starving doesn't solve anything." I think I need to get that engraved somewhere...or tattooed down my arm, perhaps.
Oh Dr. R. Why is it that I decide practically weekly that you're annoying and out of touch and I don't need you, and then somehow you convince me otherwise?? We had a good session yesterday, mostly because I was being rational and didn't cry through the entire fifty minutes like last week. We're at kind of a crossroads because food had been going super super well for several weeks, but now this medication has sort of thrown a wrench in my routine. I'm reallyfreaking out about weight gain, and it's not making the meal plan go down any easier. I'm not restricting, but I'm definitely not eating freely. Plus my body image is pretty horrendous, I'm isolating myself like crazy, and I'm super stressed out about school. Other than that, things are great!
R wanted to debrief about last week a bit, since I had been a total wreck and he was, to use his words, "At a loss." Didn't exactly inspire confidence in his therapeutic abilities, although I suppose I had been less than helpful and just kind of cried quietly for an hour and then left. Yesterday, we spent some time talking about my new med, which is stressing me out a lot, although I'm trying to come to terms with it. We made a pro/con list, which helped a bit, except that pro/con lists are kind of depressing when it's less about pros vs. cons and more about bad vs. worse. I got a little miffed when R said something about "emotional distress" contributing or intensifying physical pain, which I took to imply that the pain is all in my head. I'm sure that's not what he meant, but it still bugged me. I think he could tell, though, and he backed off pretty quick.
A related funny: This column is old, but I came across it today and I'm roaring. The line about "let's not get caught up in numbers" especially. I swear, that could've been taken directly out of R's mouth.
When I'm at home and have nowhere to go, I wear sweatpants over shorts 75% of the time.
I always have two kinds of cereal in my kitchen at a time. I alternate each morning, or combine them.
I own a trillion t-shirts from various sports teams/events in middle and high school, and they all still fit. I could probably wear a new t-shirt every day for months without having to do laundry (never tested that theory, don't worry.)
Between all my meds and supplements and stuff, I currently take 8 pills a day (not including Tylenol etc. for headaches and stuff like that). My roommate jokes that we should get me one of those weekly pill container things that old people have. Not amused, Roomie.
Pretty much every New Year's as far back as I can remember, I've made the resolution to stop biting my nails. Obviously, it hasn't worked.
For a couple months this summer, I was using over ten prescription eye drops per day (not including artificial tears, which I use CONSTANTLY). Steroids, antibiotics, antihistamines, anti-inflammatories—you name it, it was going in my eyes. I've since gotten a new doctor who cut me down to three, and my eyes have actually been feeling better recently.
It sucks to have so many eye problems, but I'm actually really proud of the fact that I can put in eye drops anywhere. No mirror required. I can even put in drops while driving (super dangerous, I KNOW). If you get squeamish about seeing people touching eyeballs and stuff, we probably can't be friends in real life.
I drink vast amounts of water. I also pee a lot.
I've never been stung by a bee.
Speaking of bugs, we have a fruit fly problem in our apartments. Any tips?
My brother has discovered that a great way to chat up the girls at work is by asking their advice on birthday or Christmas presents for me. They turn to "jelly," I'm told, when he talks about getting something nice for his little sister. Thus, in the last few years, I've gotten shoes, a wallet, earrings, and a Tiffany's ring out of him.