Still, as little as it’s talked about, a lot of people overuse the term depression. I hear things like, “She’s depressed because she failed her math test,” or, “He’s depressed because he has no one to play with,” all of the time, and it kind of irks me when people use the term so loosely. It’s true that if you have depression, seemingly little things will depress you more, but I feel that our society is prone to jumping to the D word any time someone has a day on the downside. “Depression” or “depressed” should not be a catchphrase.

I think I’ve always had a tinge of depression, but it really peaked — and escalated — when I was fifteen. Previously, it peaked when I was twelve, but I thought I’d overcome it. By the time I or anyone else realized I was in trouble, it was almost too late. I cut to ease the pain I felt inside, and I stopped eating because I thought I should be thinner. I also did both of these things because it gave me control when I felt like I couldn’t control anything going on around or inside me. I constantly felt suicidal, and spent a lot of time devising a plan to end my life.

My poor parents had almost no idea. I had an excellent childhood. I was happy and always smiling. I had problems in school with bullies, but nothing else happened to me that would change me so drastically. My mom and dad found out I was cutting when one of my high school guidance counselors saw my arms and called my mom. I started therapy and Zoloft, but it didn’t help because I didn’t feel comfortable opening up to a stranger I hadn’t chosen and the medication itself just made me feel nothing. I felt nothing when I wanted to feel sad, and nothing when I wanted to feel happy. Feeling nothing was worse than being depressed. Sandy realized I wasn’t eating and called my mom behind my back to tell her because she didn’t know what else to do when I was turning down and picking at foods I loved. My mom went through my room and found my food diary, regular journals, and a bunch of other things that no parent ever wants to find in their child’s room. She and my dad dropped my sister off at Noni’s and Popi’s, and came to get me at work.

Back then, I was working at a record store. When I saw my parents come in and the identical worried expression on their faces, I thought someone had died. When I saw that my sister wasn’t with them, I thought she had died. I told my supervisor I had to leave right away because of a family emergency, and went home with my parents to, I thought, hear the bad news. Instead, I came home to the kitchen table filled with my things.

I didn’t get better overnight, and I still have my days, but I’ve come a long way from that lost girl I once was. I’m proud of how far I’ve come. I’m relatively happy, very healthy (aside from the Mystery Autoimmune Disease), and am finally feeling like I am in charge of my life (and will feel more like that once I get out of these I Can’t Catch a Break twenties).

Casey is very good at putting her depression into words. It’s not an easy thing to explain. I work hard every day to fight it. I can now do it almost on a subconscious level, but I have to constantly check myself and ask myself if what I’m feeling is temporary or permanent. The problem is, I feel everything. I always have. I was a sensitive child and I am a sensitive adult. This gives me an advantage over many people because I am very compassionate because of it. I empathize and sympathize very well with other people, children or adults, and animals. However, it also puts me at a disadvantage because I internalize every insult, every failure, every misstep. I take things very, very to heart. I also feel everything excessively; if I’m happy, I’m very happy, but if I’m sad, I’m very sad. I also feel other people’s things very excessively. I have to work very hard to keep my feelings from overwhelming me.

Unfortunately, I have a habit of shutting off the feelings I don’t want to feel, so if I shut off feelings of sadness, I accidentally also shut off feelings of joy. It’s actually a normal human behavior, and many people do it. Professionals warn against it because it’s impossible to shut off one feeling without shutting off everything else. It’s very hard to learn how to not shut off any feelings, because that means you have to feel the good and the bad. I live in my head a lot and overanalyze things, so I’ve had to learn how to not think about things so much, either. This is also why I can be pretty indecisive, and why my indecision sends me into depression.

I also tend to worry a lot. I’m a worrier by nature, mostly because I’m so introverted and overthink things so much. If there is even a tiny reason to worry, I will. Things that might not be things keep me up at night as I turn them over and over in my head. I’m pretty neurotic. Sometimes it makes me quirky, which can be fun, but for the most part it makes me wish I could flip a switch and get some peace and quiet up in my head. However, it also helps me see the grey areas. I’m not a black and white person at all. I rarely take a direct stand on anything because I can see so much of the in between. I can “argue” with myself all day why something is good and bad at the same time, and still not take a stand. This is why I would be a very bad lawyer, but also why I am compassionate.

Depression is my disease, but it’s not all of me, and it doesn’t make me broken. I think it’s helped me be a better person, and I also think it’s paved the way for a lot of my creativity. I think it’s given me many facets, and while those many facets have also contributed to my depression, it’s not always a bad thing. I’ve come a long way from the mess I once was. Slowly but surely I’ve picked up the pieces and found me, who I really am. I’m able to see that these things that hurt me also help me.

Most importantly, I’m able to love myself despite and because all of these things.

I spent two hours in the store, and I didn’t get a single thing. The only thing I got was a conglomerate of feelings, none of them good. I told myself, “Okay, no big deal. I’ll just start saving money for a sewing machine, and that will be my… down the road reward.” Thinking of money, though, made me feel worse because I really don’t have any extra money at all, and can’t seem to find a job, so I shouldn’t have made plans to buy anything, and definitely shouldn’t be thinking about buying something as big as a sewing machine. Then I just started feeling bad about not having a job, and beating myself up about it… and so it went.

My original plan was to get my sewing things and Barbie, then go to Barnes and Noble to sit in the Starbucks cafe to do some writing. After all of that, I didn’t feel like writing  at all, so now I’m sitting in the cafe blogging and eating out my feelings in a spinach and feta stuffed pretzel and triple chocolate cookie. I also have a White Chocolate Mocha, of course. I actually don’t even want to be here — I’d rather be home playing Sims or something equally unproductive — but I needed that White Chocolate Mocha to cheer myself up.

In short, I am pathetic, and I really need to snap out of this. I’ve been feeling this… flat feeling for about a year now, and it’s getting worse. Obviously it all started when Popi… when we lost him, but now it’s just building on itself and spiraling almost out of control. I feel like I am drowning, but I don’t know what to do about it. I think if I could find a job or if SCSU would send me my acceptance letter (dammit), I’d be busy and wouldn’t have time to feel this way. Instead, the days just drag on and my life is spent sitting in the same spot on the couch every day, surfing the internet, filling out job applications, and playing Sims 2. I’m actually surprised no one has said anything to me about my lack of moving from said couch. (I do get up to pee, and go outside to smoke, and sleep in my own bed, but except for that, it’s the couch, all day, every day.) I don’t even like to leave my house. Why would I need to? I have the internet on my couch!

Something really nice happened today, though. While I was at Jo-ann’s, buried deep in the land of sewing and quilting and crafts, Mike called me from work to ask if I’d left my windows down. It started downpouring and he thought I might have left my laptop bag with my laptop in it in the car while running my errands. I didn’t, of course — because I live in Waterbury and a laptop in a car unattended is just screaming to be taken — but it made me feel all melty. We’ve been arguing a lot lately, so it just reminded me why I love him so much and to stop sweating the small shit. And, while I was about halfway through this post, he walked over from work while on his break and stopped in to say hi. Please excuse me while I turn into a little melty puddle of girl.

How do you snap out of long periods of apathetic depression? The good news is, all of this blah is giving me inspiration for Sade on the Wall. The bad news is, I can’t seem to motivate myself to write, even though I want to. (This is why I’m never going to publish anything. Sigh.) What are your tips and tricks for climbing out of this hole?

While I’m happy to be rid of that horrible job, I can’t seem to make a decision. I can’t seem to move forward. I’ve been spending my days doing laundry, doing dishes, writing articles for Freaking Bookworm, watching episode after episode of Grey’s Anatomy, and playing Plants VS Zombies. While my goal for Freaking Bookworm is to make some kind of income, I have yet to bring in any income from my book review blog. (Hell, my Amazon store has only just gotten four clicks… and I set it up a couple of months ago.) Don’t get me wrong. I’m having a lot of fun writing over there, but it’s not a job. Not yet, anyway. Right now, I need a job. I’m twenty-two years old. I have a student loan to pay off. I also don’t want to live with my parents for too much longer. (Mike and I really, really miss the privilege of privacy.)

I keep thinking about going back to school. The problem is, every time I think about going back to school, it’s something different. Last time I actually went back to school, I went for Elementary Education and Creative Writing. I ended up so stressed out and sick — as in, a horrible pain flareup — that I dropped out. The next time I started thinking about school again, I thought about just majoring in Creative Writing. When things started going badly with my aunt, I thought about just going for Early Childhood Education. After that, I thought about getting my ABA and becoming an aid for students with special needs. And, most recently, I’ve been thinking about getting my Bachelor’s in Journalism (probably because of the Millennium trilogy). On October 23rd, 2009, I promised myself that I would learn to not overload myself, that I wouldn’t jump into anything again without really thinking about it first. And yet, I seem to keep trying to jump into things. I restrain myself, yes, but I keep trying.

Almost two years later, I still don’t know why I’m sick. I know that stress makes my flareups and symptoms during “remissions” much, much worse. I know that I have to go easy on myself. Even though I fought hard to keep my (horrible) full-time job, I have to admit that working eight hours a day, five days a week was taking its toll on me. And that was a desk job. I wasn’t even doing physical labor! You could say that, okay, it was mental labor, but still. It should not have tired me out so badly that I went home almost every day and either laid in bed or stared at my laptop screen until it was time to pick Mike up from work. Even ignoring all of the bullshit in that job, it was still taking a toll on my health. I hate admitting it, and I certainly wasn’t going to admit it to them, but now I have to admit it. I have to admit it because I want to move forward, and in order to move forward, I have to be completely honest with myself.

So, no, going to school full-time and working part- or full-time is not at all an option — even if I did know that I really, really wanted to go to school for something. If I did know what I wanted, I’d have to work part-time and go to school part-time.

Unfortunately, I don’t know.

Another option I’ve been thinking about is getting a part-time job and spending the other part of my time writing novels and stories (as in, finishing Sade on the Wall and getting an agent for it), and writing for Freaking Bookworm. That kind of life really appeals to me. It’s incredibly, incredibly appealing.

The only problem with that plan is… I’d really, really like for Mike and me to have our own place. He moved in last August. We’d planned on moving out sometime around now. Maybe, if I work really hard, I could make a part-time job, my writing, and my book blog equal the income I would need for us to have our own place.

I could very, very easily get another job as a web designer, where I’d make at least the same amount of money I was making at my previous job. I just don’t want to.

So, I just don’t know.

It’s times like these that I miss being a kid and having a grownup tell me what to do. Now would be a really good time for the grownups to step in.

I hate my job, so I need… something. I just don’t know what that “something” is. I know that I need to leave this job, because it’s stressful and I’m not happy there, but I don’t know what I want to do.

Should I get a part-time job and go back to school full-time?

Should I get a full-time job and go back to school part-time?

What do I even want to go to school for?

Should I try to find another web design job?

Should I try to start my own business?

What should that business be? Web design?

I have so many questions that might answer what that “something” is, but none of them feel quite right.

I feel stuck.

It’s not like you can tell everyone you come into contact with that you are hurting. So, you wrap it up and walk around with it.

This is probably the only part of the post that is clear. I go through every day encountering many different people: coworkers, complete strangers, family, friends, and my Mike. (I’d throw him into the “family” or “friends” category, but saying he’s family just sounds gross when I think about it, and saying he’s one of my friends doesn’t even begin to cover it. Mike gets his own category.) There’s also my cat, who seems to be the most in tune to how I’m feeling — which is only because she has that sometimes creepy seventh sense. (I say “seventh sense” because we all know cats and dogs see ghosts.)

Now… where the hell was I? (See what happens when you try to clarify a post before eating dinner? My pizza needs to hurry…)

One of two things prevent me from telling anyone I don’t feel good (unless they ask):

1. I don’t want to whine, or
2. it would be inappropriate

I recently had a conversation with a friend whom I had just told about my mystery autoimmune disease. I’ve known him for years — going on nine years, to be exact — but in the past four years since my body started going haywire, I had never even mentioned that I was sick. Yet, we share things that most friends share with each other, like family problems, relationship problems, job problems, and so on. I felt really bad that I had never told him, and apologized. He asked why I had never mentioned it, and I said that I didn’t want to be a whiner.

He said something along the lines of, “You’re not a whiner. I think you’re really cool.”

I had to backtrack. “No, no. I didn’t think you would think I was a whiner. I just didn’t want to whine. I make no sense.”

And that’s exactly it — I make no sense. I don’t want to tell the people I’m close to that I’m in pain because I have some kind of macho “you can’t be weak” mentality toward myself. It’s not that I think anyone would think any less of me. It’s me, coming down on myself. Even stranger, no one has done anything to me to inspire this mentality. I can only speculate: denial? stubbornness? wanting to appear strong, even though I feel weak?

The second reason why I don’t say anything about my — I so hate to use this term, but here we are — illness is that it’s not always appropriate. Before I started working full-time, I would have bad pain days that would send me straight into tears. Now, those bad pain days — or even moments of excruciating pain — still make me tear up, but I hold it in because less than ten feet away from me are my coworkers. And then I would have to explain why I was whimpering. And then I would have to explain why I have this pain. And then I would have to explain why my doctors can’t figure out what’s wrong with me. And so on.

Having to explain all of that is exhausting. Plus, it again comes down to me wanting to appear normal.

So, no one truly knows what it’s like to live with my pain, except for me.

Every day is kind of a crazy circus of emotions regarding my autoimmune disease and chronic pain. For example, yesterday:

• 6:30am: My alarm went off and I got up out of bed without stiffness or pain. I got ready for work without limping around.
• 7:50am: I left for work still feeling pretty damn good. As I drove, I started to think that maybe I had overreacted, that it all hadn’t been that bad.
• By 10am, my left wrist was stiffening up and aching.
• Around 11am, or maybe even noon, my right hip started getting slammed with jolts of excruciating pain. I kept biting down on my fingers so that I didn’t scream.
• By the time I got home around 6pm (I had to work late to make up time for tomorrow’s doctor appointment), my feet were stiff and too swollen for my Nike sandals.
• By the time I went to bed, my lower back was aching like a female bunny after too much Woohoo*, and I was ready to punch someone.

Today was actually a relatively good day; I am a little stiff and swollen in some places, but not in any real pain. (I’d say about a 2 out of 10.)

Because I also have depression — which is now worse because of my autoimmune disease — I can honestly say that it’s the same when your pain is in your heart rather than your joints.

Anyway. I hope I’ve made my last post a little more clear.

–

*Clearly I am having Sims withdrawals; woohoo is the Sims word for sex.

Your pain becomes yours and only yours. You begin to feel wretchedly lonely. Every day, you spiral further and further down into your pain. You get to know it, learn its intimate secrets. After a while, your pain almost becomes a friend — you know, if it didn’t hurt so damn much. Your pain knows you better than you knew yourself, and because of your pain, you get to know yourself better. You become stronger. You learn that what you thought were your boundaries are silly little lines that you can just step over. Every day, you conquer your pain a little more in some way — whether it’s figuring out a new medication routine or something that soothes your aching mind.

And then your pain unleashes a surprise attack, one that overpowers your new medication routine or your new relaxation technique. You begin to descend again.

When you come out on the other side, you learn something new about yourself — that the boundary you learned to overcome previously is just a silly little line that you can step over.

And so it goes.

I have several major problems with my job.

They give me a hard time about doctor appointments. I’ve only subtly referred to this before, but they don’t seem to be understanding at all, even though they claim that they “try to be.” (They have a lot of claims, actually. I’ll get to this.) My boss gave me false information about sick time policies, and I ended up getting in trouble with his boss, the guy who signs my paychecks. (I’m going to refer to my boss as Boss, and his boss as Owner.) However, I’m still not certain that I was ever given correct information about sick and vacation time, because my contract very vaguely states

BENEFITS: Eligible after 30-days of employment or March 11, 2011.
–Entitled to paid holiday time, one week of paid vacation and one-week of paid sick time.

When I missed two days because of my sinus infection and a nasty pain day, Boss told me that I would be paid for the days I missed, because I am salary. Not long after that conversation, he called me into his office again to inform me that he was wrong, that I wouldn’t be paid, that he had previously had no idea how the policy worked, and that I would from here on out gain a small portion of sick time per every so many hours I work.

Here is the kicker: My contract states March 11th, correct? Well, I’ve only recently even started gaining sick time, and have yet to gain vacation time. So far, I have only accrued 1.50 hours of sick time… which is completely off base from what Boss told me, and off from what my contract says.

So, when I have to leave early for doctors appointments — because Boss has strongly voiced that I should work 8:30-4:30 because “after that, our team isn’t around” — I have to make up the hours. I have to tack on extra time to my work day, which would be fine — if my regular eight hours didn’t already completely wipe me out. If I have a bad pain day, or get sick, I have no sick time to use, so I have to either go in anyway (which I’ve been doing), call out and miss the day of pay (which I don’t think they calculate properly, truth be told), or call out and make up the hours throughout the current pay period.

I do not mind going by a sick time policy… when that policy is actually clear.

They hired me for one position, but have me doing something completely different. My contract lists my position as “Social Marketing and Web Design Coordinator.” During my interview, we discussed my social marketing experience, my web design experience, and how much I knew about SEO. I told them that I had a very, very basic knowledge of SEO: meta tags. My resume strongly illustrated my social marketing and web design skills. During that same interview, I was told that I would be doing “just a little SEO.” Upon starting, I was told that I was not to focus on social marketing, and that I was hired specifically for SEO. Um, what?!

Still, I tried. I genuinely love social marketing. I created plans, offered solid suggestions… all of which were instantly shot down, or completely ignored. So, I tried to learn some SEO. Unfortunately, you don’t just magically become an SEO expert. It takes years of experience to know what you’re doing. Yet I tried anyway. They still instantly shoot down or completely ignore my suggestions.

Day to day, Boss has me working on SEO-focused projects. I don’t have a problem with learning something new, but I do have a problem with working on a project that he directly oversees that he completely forgets about the next day. I am not exaggerating when I say that every day he tells me to do something that I have already done — a project that he came up with, that he oversaw, that he uploaded when it was completed. He frequently changes his mind about what I am supposed to be doing, and has told me to ignore any of the tasks that Owner gives me because “they’re not at all a priority” — but that’s another rant entirely.

Even better, when I give him suggestions that he shoots down or ignores, he later presents them to Owner as if they were his ideas.

The girls at work tell me that it’s not just me.

Speaking of the girls at work, I frequently feel like I’m in high school. Every day, they giggle about something, and when I ask what’s funny, I quickly get “Nothing!” as a response. Today, I brought in grilled chicken and a salad for lunch. Not long after putting it in the fridge, the two girls and my boss began loudly commenting that it smelled. I went to use the bathroom — which was fun, and I’ll get to that — and when I came back, all three of them asked me several times if I brought bologna or hot dogs, even after I said no. Throughout the day, they commented over and over that “it smells like bologna!” I got so sick of hearing it, that I didn’t even eat my lunch, because I didn’t want to hear it any more. I thought my chicken smelled like, well, chicken, but to make sure, I asked my mom to sniff it. She said it smelled like chicken, too. It smelled good to me!

It’s not really a big deal. I just felt like they were specifically targeting me… and the daily “mystery” giggles just add to the feeling that I’m not welcome. To my face, they’re nice. I even know one of them; she dates Mike’s friend, and the four of us go out all the time. I didn’t think she was that kind of person, but sometimes, I’m seeing differently.

Each day brings on new health-related challenges. I am constantly combating fatigue, joint pain, joint stiffness, and my GI issues. Today, for example, my wrists and fingers were so stiff that it took me a really long time to type four-word sentences for a To Do list coworker T and I put together for Boss. I typically spend at least twenty minutes in the bathroom, at least every other day. In the mornings, I am so slow that I am now rushing out of the house, when at first I was getting to work fifteen minutes early — and I still wake up at 6:30 every morning.

Quite honestly, I am waiting for the day when Boss complains that I am in the bathroom for too long. I know it’s coming. I already have my comeback ready — “I have Inflammatory Bowel Disease, okay?” — but still. They already complain when I miss meetings for doctor appointments (even though they have been made aware that I have an undiagnosed autoimmune disease, and therefore these appointments are critical).

These eight-hour days wreak havoc on my already aggravated body. Most days, I come home from work and lay in bed. More and more, I’m even spending my weekends in bed. My Mystery Autoimmune Disease is getting more aggressive, yes, but not being able to rest is really taking its toll. When I worked from home, I could sleep in if I didn’t sleep well the night before, and could take as many rest breaks as I needed to. I’m trying like hell, but I’m having a harder and harder time pushing through it every day. I consider leaving early every day, and the only thing that stops me from leaving early is knowing that I have no sick time to help me out.

I have so many doctor appointments that I am constantly trying to make up for the time missed at work. Thankfully, I got a break last week and this week, but I have more coming up, which I know are going to lead to even more. I’m seeing my gastroenterologist next Wednesday, and he is probably going to order another colonoscopy, since my rheumatologist wants to make sure my bleeding is caused by inflammation, and not something else. Then, as long as the colonoscopy comes back okay, my rheumatologist is starting me on treatment for Rheumatoid Arthritis… and I’m sure that means he’ll be seeing me quite often. I’m also concerned about the treatment itself. As much as I want to have a diagnosis and treatment plan, I have no idea how the treatment is going to affect me. Will I be able to work? I wouldn’t possibly be able to make up all of the time.

For now, I have to wait and see what happens, but I know I have some tough choices ahead. I’d like to look for a different job, but I don’t really want to do that until I know the details of my treatment; I can’t exactly start a new job and then suddenly only be able to come in three of the five days a week, for example, if my treatment includes physical therapy or something. Hell, I’m not sure I can keep my current job if I’ll be doing physical therapy, regular checkups, and different tests to make sure the medications aren’t affecting me badly. I’m sure that before I can even start treatment, I’ll probably have to have x-rays and stuff to check on the lining between my joints.

I want treatment, so badly. If it comes down to choosing between treatment and work, though, I’m going to be in trouble; I can’t afford treatment if I don’t work. I looked into disability a little and I can’t figure out how the process works, where to start. Throughout the last four years, I never once thought that I might have to be on disability… but here we are. Some days I feel like I should be on disability, while others I mentally kick myself for even thinking I need it.

And while my mind runs through all of these things, I just have to keep reminding myself to wait and see, because that’s all I can do. Keep trying to push through each day, and wait and see.

One good thing is coming out of all this: I am learning that I’m pretty mentally strong (or at least pretty fucking stubborn). I just wish that I wasn’t simultaneously so mentally weak; I frequently break and just cry. There are so many other people who have it so much worse, that I feel like I shouldn’t be complaining; I should just make it through without having to push through.

My right index fingernail

The photo is kind of blurred — you can thank my Kodak software, which deleted the nice, clean photos Mike took, when I transferred them to my laptop, so now I just have the ones I took on my own with my BlackBerry — but you can still see the clubbing.

Fingernail clubbing

Okay, this one is clearer, and you can see it a lot better.

Anyway, when I first noticed it this morning, I tried to ignore it. I made it all the way to the end of my work day, and then I broke down and did some sleuthing on Google. It turns out that my fingernail “deformity” is a medical condition called fingernail clubbing. I only figured it out after Googling “nail deformities” or something like that, and found this slideshow. Obviously, my case is not as bad as the image they use, but the description fits. As soon as I read “clubbing is also associated with inflammatory bowel disease,” I went into SUPER GOOGLE MODE and Googled “nail clubbing.” I learned that:

• nail clubbing is not painful (so at least there’s that)
• it could be a whole lot worse than the case I have
• it’s a definite sign of something going bananas in my body — most likely inflammatory bowel disease

Since Inflammatory Bowel Disease is caused by Rheumatoid Arthritis, I’m guessing that this is just a happy little chain reaction. I always knew that you could see your general health in your fingernails, but damn. As the day has done on, the clubbing has gotten worse, and is now in most of my fingernails. I have a feeling it’s going to get worse… but as sick as this might sound, I’m hoping it does; come Monday, if it’s still there, I’m calling out of work and calling my rheumatologist. I cannot wait until Thursday when I see my gastroenterologist. This could be a very important piece of the puzzle, though I might not like the final answer.

I’ve accepted that this is all my reality. For the past two weeks, I have been in nonstop pain (except, of course, when I take my medications). I have spent an awful lot of time laying in bed. Last night, I finally broke down in tears as I drove to pick up Mike from work. I’m tired, and I’m tired of being in pain. I’m tired of popping pills to try to alleviate said pain. I am on a 24/7 pill schedule (which I created through trial and error last weekend).

At 6:30am, I wake up to my alarm. It takes me almost ten minutes to get out of bed most mornings, because I’m so stiff. Usually, taking Tramadol and Tylenol Extra Strength the night before helps with the morning stiffness. (Please, please do not hold back your morning stiffness jokes in the comments. I could use the inappropriate giggles.) When I finally make it out of bed and into the bathroom, I take a Skelaxin. Skelaxin only works for the first half of the day (though I am still experimenting with the timing of the second dose). Later on at night, I take my Tramadol/Tylenol cocktail. If I take it too close to my last dose of Skelaxin, I get really fucking dizzy and physically cannot be vertical. (There’s a joke in there. I’m leaving it up to you, dear readers. Comment away!)

I go to sleep shortly after, and then I wake up in the morning and do it all over again.

It is fucking exhausting.

But here we are. I have finally accepted this as reality. My Mystery Autoimmune Disease is kicking my ass. I’m terrified that I’m going to end up unable to work a job where I leave the house and work in an office for eight hours. This entire last week has been hell. My feet have been too swollen to wear regular shoes, like sneakers, so I’ve been wearing my Nike sandals. I don’t know if it’s because the joints are swollen or what, but about an hour into wearing anything other than my Nike sandals, I have to get my feet the hell out of those shoes — as if I’ve been standing on them all day. Top that with intense joint pain 24/7, and fatigue, and the Inflammatory Bowel issues, and by the end of my work day, I’m completely spent. You wanna talk about being out of spoons? Every day this week, I’ve had two or three spoons a day. Today I actually felt good. I was still in pain, of course, and constipated, but the pain was a 3/10 instead of a 7/10 or 10/10 or 100/10 (like last night). Even then, eight o’clock smacked me in the face with a good dose of fatigue.

I have been trying for days to write about this, and kept hitting a wall. (Yesterday, I didn’t even try. I just laid in bed watching Batman Beyond.) This afternoon, while driving home, I accepted this as my reality. Like my mom said, tomorrow this flareup could be over and I could feel kinda normal. I hate to say it, but I feel like normal of four years ago is far behind me, and that the only thing ahead of me is illness — nail clubbing and all.

But I’m not just going to give up. I might not be able to get better like you can with a sinus infection or the flu, but I can hold on to my dreams. I can hold on to the fact that I have a man who loves me so much that he will lead me to my bed when my medications overlap, tuck me in, and do everything I would normally do — like save my blog drafts before shutting down my laptop, move my comics to a safe place so that Squirt doesn’t mistake them for chew toys, and get my earplugs — so that I can avoid being vertical and falling over. I can hold on to the fact that my cat comforts me when I’m in agony. I can hold on to the fact that I have awesome family and friends (both off- and online).

I have to admit, I never thought this disease would take me to a day where I’d have to stay in bed, but I’ve found that this is my reality more and more. Fortunately, I have a nice collection of DVDs and books for those days when I just have to stay in bed.

Things have been pretty bleak lately up in my mental space. I cry almost every night because I miss Popi, but I force that pain to remain silent. It got so bad that I started withdrawing, pushing everyone away. I wanted to be alone, even though I felt so lonely.

Depression is such a paradox like that.

Being in my head these last few days hurt in a way that I can’t even describe, like having the most painful open wound, only on my heart. When I finally told Mike how I felt, though, the wound closed a little. I feel a lot more healed than I have in months.

Being trapped in this body and mind is exhausting. My body is, as usual, being crazy. I often feel like there’s no escape. The rashes on my hands come and go, I wake up every morning stiff and sore, my GI system changes its mind every day, I’m constantly thirsty no matter how much I drink, and the amount of mucus in my sinuses makes me nauseous every day. I have not been a fun person, mentally or on the outside, to others.

I saw my rheumatologist on Thursday, and got the results from the blood work I had done back in January. Everything came back negative. The only thing that showed up was that my blood sugar was a little high, which is strange because I’m hypoglycemic, and my blood sugar was crashing when I got the blood work done because I’m stupid and hadn’t eaten yet. It doesn’t make any sense. I talked to Dr. Kelly — my rheumatologist’s office is run by a husband and wife; this time I saw Dr. Greco’s wife — about my current concerns, and she also looked at the joints in my arms and hands. She said that the joints in my right knuckles were all swollen, so she gave me some samples of Celebrex — an anti-inflammatory — to try. She also ordered more blood work, thinking that my IBS-like symptoms could be caused by Celiac. Interestingly, the symptoms of Celiac are pretty close to mine, although I don’t notice any onset of symptoms after eating anything with gluten.

So, as usual… PLEASE LET THIS BE CELIAC! I want a diagnosis so badly, I don’t even care what it is at this point. I am so tired of going to the doctor and getting more blood work done. I feel like every time I take a step closer to finding out what is going on with my body, I end up taking two steps back. This month marks four years since my body started going crazy. I have spent four years trying to get an answer. It might not seem like a long time to some people, but it feels like an eternity to me.

I started Celebrex this morning. Dr. Kelly told me that it could irritate my stomach and make my GI issues worse, and that it could also cause swelling in my feet, so if it does bother me in any way, I am to stop it immediately. I’m also to get the blood work done a week after being on Celebrex, to check my kidneys because Celebrex can cause kidney problems, although it’s pretty rare.

How many drugs have I tried now? I’ve lost count. I asked her if Celebrex would make me feel weird, and she said it won’t, because it’s only an anti-inflammatory, and is non-steroidal. Good thing, because we all know how I react to meds. Sigh.

Other than being at war with my brain and body, things are all right. I’ve been at my new job for a month now. It’s moving slowly, and sometimes I’m really not sure where I fit in, but I think I will start to get into a rhythm soon. Hopefully. It’s frustrating at times, because I feel like they don’t listen to me, but let’s face it: I’m new and I’m relatively young. My age has never worked in my odds, but usually, with my old clients, as soon as I opened my mouth, they realized I knew what I was talking about. I have to keep reminding myself that there is a lesson in this new job somewhere; there is a reason why I’m working there and not somewhere else. I need to keep an open mind and try to be extra patient with the situation, rather than letting it either crack me up or make me want to crack a wall with my head.

And, of course, I have hosting again. It might sound silly, but I could hug this domain. This really is my digital home. I could not write comfortably at Diary of a Sicky. (However, I really liked the name, so I “migrated” it over here.) I’ve been setting things up again little by little. Right now, Freaking Bookworm is the only site that is completely all set. I have big plans for that little site. I’ve written up a marketing/business plan for it and will be posting it on the site soon. My goal with Freaking Bookworm has always been to talk about the books and comics I read with other people, but I’m taking it a step further. Just you wait and see! It’s going to be awesome!

I’m waiting impatiently for Tuesday, the day that a musician I’ve been following for close to ten years releases her first single. I was listening to Alaina Beaton back when she was Porcelain and the Tramps. Tuesday she’s releasing her first single, “This is What Rock and Roll Sounds Like,” under a huge record label Red One — the same label that Lady Gaga is on — under the name Porcelain Black. Her old music is fucking awesome. She describes it as if Britney Spears and Marilyn Manson “fucked and had a kid,” but since I don’t like Britney, it’s more like… I dunno. It’s awesome. My only concern is that her new single is featuring Lil Wayne. If you heard her stuff back when she was PATT, this would be a huge shock to you. It’s very strange, never mind the fact that I can’t stand Lil Wayne.

See? Totally not hip hop. But maybe I will be pleasantly surprised. I can’t imagine how this could end well — for my musical taste, anyway — but I’ve loved her music for so long that I am clinging to the hope that she hasn’t changed. Clinging, I tell you. Oh well. I guess I’ll have to wait until Tuesday. Don’t worry, though; I’ll definitely be writing about it.

(As an aside, I really hate that YouTube changed their embed code to iframes. Since I use self-hosted WordPress, I have to paste the embed code in HTML view, and if I go into Visual view, the video disappears. This isn’t so much a problem for me as it is for people who don’t use HTML. WordPress.com blogs let you paste the video URL between brackets — for example:

– in Visual and you’re golden. Anyone know of a plugin that does that for self-hosted WP?)

I’m so glad to be home.

I remember when I was twelve and I went to public middle school. Many of the other girls were these violence-crazed creatures high on hormones and too much hairspray. They liked to torture me, sometimes on the bus by throwing things — pencils, soda bottles, and other small and random objects — at me. One girl — whose name might have been Stephanie — liked to yell random things at me in Spanish, and tried to get my attention over and over. I did what my parents had taught me to do: ignored her so that she would go away. I sat on the shitty brown bus seat and stared straight ahead.

Well, she didn’t go away; she decided to bop me on the head a couple of times, like in that children’s song. It didn’t hurt — not really, anyway — but for some reason, I cried anyway. I cried when I got home and told my parents, too.

“Did she hurt you?” my dad asked gently.

“No,” I said. “She just…”

“…hurt your pride,” he finished, knowing the words I couldn’t find at twelve.

That’s how I feel right now. My pride is wounded. I’ve been bopped on the head one too many times. I’d like to buy some grownup milk and cookies* to take it all away, but I have no money. Hell, I can’t even buy the things I need.

So yes, I’m nervous about tomorrow. This time, it isn’t just about having extra money. I am now twenty-two, and have some grownup bills, and some grownup pride to go along with it all.

I was just managing to keep my depression at bay before last Monday; now I can barely keep it off of me. If tomorrow goes well, it would sure cheer me up.

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*”Grownup milk and cookies” are what Lorelai calls booze in the Gilmore Girls episode where Christopher’s father dies.