No one cares about your pain, except for you

I don’t mean that no one cares about you. I don’t even mean that no one cares that you are hurting. When you experience any kind of pain — emotional or physical — on a daily basis, you carry it around with you. 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.

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.

Harassment, health, and hard decisions

I hate Monday, Tuesday, Wednesday, and Thursday. I only slightly dislike Friday. Why? Because every work day is hell. Not only am I in pain, stiff, exhausted, and most days spend at least twenty minutes in the bathroom, but my job itself sucks.

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.

Cyanide and Happiness, a daily webcomic
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.

Cyanide and Happiness, a daily webcomicFor 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.

Cyanide and Happiness, a daily webcomicAnd 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 nails are clubbing, and not the good kind

This morning I noticed that my index fingernail looked kind of… weird. What the fuck did I do to it? I wondered. Shortly after, I realized that the same fingernail on my other hand looked the same — as if the nail had arched into an hourglass shape on its own. I looked at my other fingernails and they all looked fine… except for both of the index fingers’ nails.

My right index fingernail

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

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.

Honey, I'm home!

I woke up this morning and noticed little green buds on the tree outside of our bathroom window. I knew spring was here just from the spring rains we’ve been having, but seeing those tiny little capsules of life gives me hope.

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.

Grownup pride

Ugh. The depression is hitting again. Maybe I’m just nervous about tomorrow. I feel like my pride is hanging by a thread.

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.

-

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