Perpetual Smile

“I havnt talked to you in a while and wanted to say hi and stuff,” reads the text message. Ever since opening it, all I can think of are his hands around my throat.

* * * * *

Things have been absolutely bonkers on planet elizawhat. Aside from people from my past popping up like germs on a little kid’s hands, life has been packed with huge projects for clients with looming deadlines, a new niece to snuggle and love and gaze at while she sleeps, anxiety about Popi’s angioplasty that he had done today, a renewed sense of connection and even deeper love for Mike (who has been amazing beyond words through all of the shit hitting the fan), a slew of phone calls to schedule appointments with various doctors, more worry while we wait to see what the doctors say is going on with Dad, depression cycling in and out of me faster than fucking bunnies (and “fucking” is a verb here, heh), and a deep, unquenchable urge to play Sims and write even though I barely have time to sleep.

Suddenly, “bonkers” doesn’t seem quite appropriate; things are absolutely batshit.

* * * * *

Popi has been having chest pains, that go all the way down to his elbow. They found two clogs in the arteries of his heart, and did an angioplasty this afternoon to open up the arteries. They’re not sure why the arteries were clogged; it could be the chemo, it could be something that was already there before the cancer came along. More than likely it is the chemo, because a few weeks ago they did a full slew of tests and no clogs were detected.

I’m angry and afraid, to be perfectly blunt. I’m angry at the chemo, and afraid that it’s going to destroy him, piece by piece, before the cancer does. And then I saw him last night, and seeing him looking well and being with him made me think more positively. I look at my great-great-aunt Nan, who is in her nineties and was diagnosed with stage 3 cancer more than six years ago. She’s fine today, still kickin’, feisty for such an old lady. She makes her own clothing. She drinks wine. She cracks jokes, sometimes dirty ones. She’s got an uncanny strength for someone who looks so fragile. I admire her, deeply.

She is proof that Popi can make it through. It pisses me off when everyone starts discussing hospice. It’s like they’ve already given up. I don’t want to give up. Call me selfish, but I want to keep my Popi. I like to think that he can kick this thing’s ass, even if it’s already taken its toll in so many places: hip, spine, liver, lung. Fuck you, cancer. My Popi is stubborn and won’t go down so easily. I won’t let him.

* * * * *

My niece is a doll. She has Jaysa’s nose, Robbie’s face. Her hair is black and her head is full of it. Her eyes are big and constantly open, aware. She may not be able to see much yet, but she looks like she’s perfectly aware of what’s going on. Ciana Olivia Pelletier already has all of us wrapped around her tiny, long fingers.

* * * * *

It’s hard to talk about everything that is swirling through my mind. I don’t really even know where to start. I’m bone tired, thanks to a week full of nights spent staying up until the ass crack of dawn to get pieces of projects complete. I keep reminding myself that if I work hard now, in five to ten years I’ll be able to enjoy things. Sometimes I wish I could be a “normal” twenty-one-year-old, spending my late nights partying instead of working, falling asleep with veins full of thin, beer- or vodka-chased blood, then waking up to do it all over again the next day. But my partying stages were years ago, when being fifteen meant that I didn’t care much about my future. Now, I want that future, whatever it may be.

* * * * *

I know things have been pretty serious around here. I promise to try to make this place fun again. Thank you for listening.

I want to tell you all about so many things, like Christmas Eve, my latest bout of depression, the Nintendo DS I bought myself as a treat, all of the pain I’ve been having lately, the insane workload I’ve been carrying, and a few other things. But when I sit down to write, all of my thoughts blow away like clouds on a clear summer day. I could tell you about how I lost my appointment card and have no idea when my next rheumatologist appointment is (or was). I could tell you that I feel like it does no good to go anyway. I could explain to you how amazing Mike is and that without him I would not have made it through the last few days.

I want to tell you how badly I want to reorganize my life right now, because it feels so messy and everything I want feels so out of reach. I want to tell you that not every moment in my life has been gloomy; I’ve had some good happy moments lately, too. I want to tell you all about how my family is doing, the love, the fights, the eggshells.

I just don’t know where to start, my friends.

I’ve been reading everyone’s blogs and it seems like we’ve all been having more than our share of ups and downs. I can barely get my thoughts together enough to leave a comment worth reading let alone encouraging. Everything feels so chaotic right now. My own head is a mess and my heart is lost. There is so much to fight right now, but I feel like every time I swing, I miss by a wide berth. (Can you tell I’ve been running around as Link in the latest Zelda game for the DS?)

I know that the end is in sight. I tell myself that, as soon as I finish my big client’s project, things will get a little better. But I know it isn’t just the project that is weighing me down. I spend so much of my time worrying and stressing that when it comes time to take action, I freeze. I think this is defined as ANXIETY. I know that I should probably grab a phone book and call a therapist. I know that I should call my rheumatologist’s office and find out when my next appointment is (or was), since I’m worrying myself sick that I might have to pay a fee if I missed it.

I worry, worry, worry.

I wish that someone would guide me through this, like some sort of magical creature that will say, “Okay, do X and Y will happen, so then do Z and it’ll be all set.” I wish someone would take care of me, even though I am old enough to take care of myself. I need a rope, friends. A thick, knotted rope that I can climb up to the top where I can see everything.

Or maybe I am already able to climb up and look. Maybe I only need to let myself SEE. Maybe I have become so comfortable with the bottom that I’ve allowed myself to stay there. To quote Silversun Pickups, “I don’t care, I’m still here, everything seems perfect from down here.” Except it’s not.

I wish that I only had to handle one thing at a time, but that’s not the way life goes. Maybe if I put everything out, examine everything that I’m dealing with, and SEE it for what it is, then maybe I can figure it out. So if you don’t mind, I’m going to do that. Let’s see:

• The big project. This project is HUGE and is making me a lot of money, which is awesome. The not awesome part is that I’m stuck on a couple of things with it, and being stuck makes me freeze instead of taking action. This needs to stop. I need to figure out how to fix the issues I’m having with the coding. I need to force myself to sit there and work through it. Standing still is not going to help. Letting the anxiety of the Impending Deadline stop me in my tracks is not going to help. If I don’t say “fuck you” to the anxiety, I’m going to be frozen until the Impending Deadline hits me right in the head. I need to remember that it is not only me that will take the hit if Impending Deadline comes and the project is not done. I need to also not let that scare me into frozen fear. I need to keep saying “fuck you” to the anxiety and work through the stubborn code.
• The pain. Whatever the hell is wrong with me has been pretty aggressive lately. A few days ago, both of my hips flared up, with the ache radiating back and forth, so that my whole front hip area was in agony. The next day or maybe the day after, my right hip flared up, then radiated to my back. The back side of my hips and my lower back were a big glow of RED pain for maybe an hour or two. I fell asleep some time after it started, and when I woke up it was gone. This morning, from the front of my hips all the way to my toes ached so badly, I could barely walk. All I wanted to do was lay down and go to sleep, but I had so much work to do and also had to go to work. It quit around the time I went into my day job, so I’d say it lasted at least three hours, maybe four.

  I’m so tired of bouncing from doctor to doctor, spending so much time and money when all I get are no answers. It all feels like a huge waste of time, and once again I feel like they are never going to figure out what is wrong. I think I’m going to spend the rest of my life bouncing between mind numbing flareups and a very thin time slot of remission. What I’m experiencing is the definition of rheumatoid arthritis or some other autoimmune disease, and yet all tests come back negative — except for that one double stranded DNA, which is supposed to mean I have some sort of autoimmune disease, but so far my rheumatologist has been unable to determine which one. I know this requires a lot of patience, but I am not the most patient, and I think after almost three years of pain, pain, pain and a slew of other symptoms, most other people would also have lost their patience.

  I’m also tired of A Certain Person scoffing at me when I complain, as if I am just making this all up. I want to be taken seriously by A Certain Person, but I get the feeling they don’t because they can’t physically see any of my symptoms. I’ve gotten to the point where I mostly say nothing when I’m around them and experiencing symptoms. And anyone who deals with chronic pain knows that it’s so hard not to say anything. Since I spend a lot of time around A Certain Person, I spend a lot of time not saying anything. (And no, it isn’t Mike.)

  I know what I need to do. I need to push the fears of never finding an answer aside once more and I need to call my rheumatologist to either reschedule my appointment or get the date so I can go. When I do call, I need to be adamant about getting in sooner, and I need to stress that my symptoms have once again gotten worse. I need to not let the fact that I feel okay right now get in my way. I need to remember that “okay” can quickly turn into agony and that by speaking up and being a little more vocal, I might be able to get closer to the answers and treatment I need. I need to remember that I do NOT deserve this.

• My wish to write. While I spend most of my time working, I yearn so badly to get back to the novel I started during November. I know that my client’s project has to be done before I can get back to the novel. I need to remember that the sooner I finish this huge project, I will have more free time and will be able to spend that time finishing my manuscript so that I can start editing it.
• Taking the time to relax. I absolutely NEED to do something nice for myself once this project is done. It’s time to use that spa gift certificate my uncle gave me for my birthday so that I can go get that massage. I have been treating myself with DS Zelda breaks, but I also need to remember that too many breaks kills productivity. I need to remind myself that I do deserve the breaks, but should try to get more work done first.
• Popi. This is the hardest of them all, because there is nothing I can DO. Instead, the worry about his health pushes down on me. I don’t know what to do. I do know that I am so scared of losing him.

  His second round of chemo went well. He was only at the hospital for three days, and came back home on the third day. He hasn’t experienced any side effects. He’s just awfully tired from fighting so hard. I am so proud of him for being so strong. His strength makes me want to be strong, too.

  I am having a hard time fighting the worry, though.

Whew, glad that’s all off my chest now. I really need to stop bottling everything up and keeping it to myself. I have a hard time vocalizing the worry, though; I force myself to carry it all on my own.

If you’ve read this all the way through, thank you. I’m so glad that you were here to listen. Now I want to return the favor. Tell me, how are YOU doing?

Obviously my chronic illness bothers me. There’s no denying that I’m constantly angry, frustrated, or depressed because I am almost always in pain. But last night I realize what bothers me the most about this whole thing.

I always feel so weird complaining, like maybe I don’t have the right to complain because I don’t have a diagnosis. I read other chronic pain blogs and they all know what’s wrong with them. I can empathize with the pain, but I feel left out because I don’t have a word for what’s wrong with me. I feel like I don’t have a place or a group to belong to, as strange as that sounds. Ironically, I’ve always felt like I never quite fit in anywhere, so naturally it has to be the same way with my illness.

There are whole communities devoted to people with Lyme Disease, corners of the web for people with Thoracic Outlet Syndrome, and even a place for moms with chronic pain illnesses. Undiagnosed.org is empty. It’s just a placeholder for something. Am I truly alone out there?

I still have to get yet another round of blood work for Lyme Disease done. I might do it tomorrow morning, as long as I can find someone to take me (I hate going alone), and as long as it doesn’t interfere with going to the beach (yes, I’m that bad at finding excuses).

Maybe it’s the gloomy weather, but today it’s a lot harder to deal. Maybe it’s because my legs hurt, reminding me that I’m not as healthy as I was a couple of years ago. Maybe you can’t tell from the outside, but I feel like shit. All I want to do is fall asleep and ignore everything else for the rest of the day — including Mike, who I’m supposed to hang out with later.

Maybe, instead of working on web projects, I’ll channel all this blah into something productive and WRITE. I miss writing. That would be nice.

I flipped open my checkbook and looked at the last balance. Almost $70. Good. I could get my hair done, and I’d still have enough for coffee for the week.

Mike had overdrawn his account, so after lunch and meeting with the bank accountant to straighten things out, we went to his sister’s salon to attempt to look human again. (Well, I already looked human and just needed a trim and some color. He had a beard fit for a grizzly and wanted to shape up his cut. Secretly, I hoped he would clean up the beard, too.) Britt brought us back to life in just a couple of hours, and I felt so good that I practically skipped out of the salon. Who cared that I desperately needed sleep? Not me.

Later that night I begged Mike to take me to Kmart — sorry, Target — so that I could get a beach chair and noodle (one of those foam floaty things) for a beach trip I had planned with my family the next day. Kmart had plenty of noodles, but just one beach chair. It didn’t recline or anything, and I wasn’t going to settle when what I really wanted was one of those chairs you could actually lie down in. So I asked Mike to take me across the street to Walmart.

By the time we got to Walmart, Mike could barely walk because I beat him into taking me to Walmart his back hurt so bad. I felt awful and kept trying to get him to sit down while I hunted for the beach chairs, but he’s just as stubborn as I am and wouldn’t listen. We ended up in the garden section looking at reclining beach chairs. These at least reclined, but in all of my fatigue I was about as cranky as a nap-withdrawn two-year-old and insisted on scouring the store for a damn unfolding-lay-down beach chair (because my vocabulary is awesome, too)!

Somewhere between the garden section and somewhere else in the store, I stopped and covered my face with my hands. I had spent about six or seven bucks at Stop & Shop on Garnier color safe shampoo and conditioner. I had spent somewhere around eleven bucks at Kmart on the noodle, some cookies, and something else that I still have no recollection of. I saw little colored numbers spinning around me in that store aisle, and then they all nosedived right on my head.

“What’s wrong? Dizzy?” Mike put a hand on my back to steady me.

“No,” I said, my voice hoarse. “I think I overdrew my account.” Had I really made fun of him for overdrawing his account just a few hours ago? Maybe I was the star of some sick reality TV show. We left the store and I called my sister to have her look at my checkbook. I did the math and slumped in defeat. How could I let this happen? Being tired was just not an excuse.

Mike stopped at a red light. “Do you want to go deposit some money into your account?”

“What money?” I had my head down on the dashboard.

“Maybe from your business or savings account?” He started driving again. “Do you want to stop at the ATM?”

I tried to climb through the sludge that my brain had become. What he was saying didn’t make any sense. “Would you mind?”

We drove to an ATM from our bank and I took some money out of my business account. As I started filling out a deposit envelope, the screen froze.

TEMPORARILY OUT OF SERVICE.

“You’ve got to be kidding me.” TEMPORARILY OUT OF SERVICE. “No,” I said. TEMPORARILY OUT OF SERVICE. “Do you hate me? You’ve got to be kidding me!” I turned and pointed, staring at Mike through the glass windows. He stared back at me. “Do you see this? You’ve got to be kidding me!”

I hung my head in defeat and looked down at the money in my hands and the half filled out envelope. As I started to shove everything back into my purse, the screen came back to life.

“Gotcha,” it seemed to say. “Just wanted to make sure you were paying attention.”

I composed myself and deposited the money, wondering if I was just crazy or if someone had a bad sense of humor. As I climbed back into the RAV4, I asked Mike if he’d seen the out of service notice.

“Yeah,” he said.

“The weird thing is,” I said, “is that my balance read something totally different from my checkbook. So obviously something didn’t come out yet, so I didn’t technically overdraw — yet. So as long as nothing else comes out tonight, I should be okay. Right? Right.”

I went home and left my stupid noodle on the porch. I crawled into bed and tried to look forward to the beach the next day, even though it meant getting up early and still not getting enough sleep.

I dragged myself through the next morning, but once I got to the beach it felt totally worth it. I didn’t have a beach chair, but at least I could float on the waves with my noodle and soak up the sun. I deserved it, dammit.

“Is that your noodle?” My baby cousin Kat asked. She was wrapped in a towel and shivering; the water was a little cold that early.

“Yes it is,” I told her.

“Can I play with it?”

“Yes, as soon as you warm up a little more, I will take you in and we’ll play with the noodle.”

She beamed up at me, and I grinned right back.

An hour or so later, she was ready to go back into the water. “Can we play with your noodle now?”

I held her hand and led her into the water. We got to her thighs and I put the noodle down, still holding onto her. “Ready?” I lifted her up and tried to sit her on the noodle. She didn’t quite weigh enough. “Wanna ride it like a horsey instead?” She nodded and I sat her down straddling the noodle. She grinned and giggled as she rode the “horsey” through the water, just like I had when I was a little kid. Suddenly the night before was totally worth it.

“Excuse me,” said someone from the shore.

I looked up to see the lifeguard on duty standing with her hands on her hips. “Yes?” I giggled at Kat continued to bounce as she floated.

“You can’t have noodles in the water.”

Welcome to the beach.

I just realized something incredibly hypocritical. I was getting things ready to take a shower, since I’ve been working all day and never got to it, and I was thinking about how much I work. I realized that I’m pretty depressed, because all I do is work. I enjoy it, I really do, but it’s become such an addiction that I don’t really ever make time for anything else.

I thought, I really love to work, but I need a vacation and I don’t know how to stop. And it’s true. Every time I think about taking a vacation, I think, I’ll do it as soon as I get this, that, and the other project finished. I never take the time to take a timeout. I always find another excuse to push that break back even further.

And now, on a Saturday night, when most other people my age are out drinking and having a good time, I’m completely exhausted. Part of this is because of my chronic pain. I know that. But part of it is also because I spent every minute since about ten this morning working. And I didn’t have to.

Working gave me something to work toward, a goal to hang onto when I got depressed. Now I’m so addicted that it’s kind of starting to make me more depressed. You could say, “well then just stop,” but it isn’t that easy. I don’t know what to do.

Virtual hugs and stuff like that would be awesome right now.

I called the Bursar’s Office (translation: business office) at Southern earlier this afternoon. The lady I talked to was really helpful. She said they were going to drop me today unless I either paid in full or set up a payment plan. I told her there was no way I could afford the first payment at the moment, so she told me to drop the class and call her back right away so she could credit the $75 I already put down back onto my credit card.

So I have to wait until the fall (as long as I get financial aid) to start, but at least I get my money back.

I’m just amazed at how little time they give students to pay. I mean, it’s only March and the class doesn’t start until June 1st!

I’m a little disappointed that I can’t start as soon as I wanted to, but this is the least of my problems right now. I’m just relieved I’m not beat out of $75.

You know how sometimes, just when you think everything is about to get better it all falls down on you again?

I went to meet with a representative from a local marketing freelancing firm. The purpose of the meeting was to discuss my skills and to fill out tax forms. The meeting went pretty smoothly, and I left feeling pretty good about my new relationship with the firm. I came home and ate, and then got online to email the representative some PDFs of my work. There was an email from my university entitled (no subject), which I thought was kind of weird.

The email said that if I didn’t pay my balance in full at the close of the business day for the Summer 2009 session, my schedule would be dropped.

Now, when I went through this last semester, they didn’t email me until a couple of months or so after I’d registered. I figured that I had enough time to pay as much as I could before setting up a payment plan. The Summer 2009 session I’m attending doesn’t start until June 1st, and I never received an email about my statement like the bill pay website said I would.

Their business day ends at 6:30 or something like that (maybe 5:00 for all I know), and I didn’t get home until about 7. So you can just imagine how I felt about all of this.

I went online to see if my balance still shows (there was always a balance but it always said “no statements at this time”), and how much I’d need to put down for a first payment. The total? $395.33. I don’t think I even have half of that in my bank accounts.

The worst part is I put down $75 a couple of weeks ago. I doubt I’m going to get that back now. Both of my parents said I should call them tomorrow, but I doubt they’ll do anything for me. They’re a big institution; why would they care about little old me?

My sister is eating Spicy Doritos and popcorn — right in front of me.

This wouldn’t be such a big deal if I could swallow.

This morning, as I got ready for work (I went in to make up for being out Tues/Weds), my throat was a little sore. By the time I got home early this afternoon, I was having a bitch of a time swallowing.

I talked to my aunt a little while ago. She said this virus has been going around, and even with antibiotics it takes forever to go away.

I thought I was home free. I spent yesterday eating pretty normal food — as opposed to soup and oatmeal. I was saving the Doritos for today.

I can smell those delicious spicy nacho chips from five feet away, and it’s driving me crazy.

I never use my Facebook account, because when I first signed up for it I thought it was pretty boring. You can’t customize your page (unless you just want to rearrange your widgets), the site itself is badly organized (especially since they changed it), and I don’t understand the point in sending people bumper stickers. Still, I know Facebook is the “it” place right now, so my social network marketing instincts kicked in and I vowed to give it another shot. So today when I checked my Gmail and saw that an old high school friend had friend requested me, I decided that it was time to make good on my promise and start networking.

I was able to add my buddy, and there were also several bumper stickers and group invitations and all that other exciting Facebook stuff. My cousin had sent me an invitation to an ovarian cancer awareness group. My inner web surfer instincts told me not to click on the more information button, but I did it anyway. The page disappeared and I couldn’t figure out how to get back to the group invites so I could check out what else I’d been invited to.

Now, I’m pretty savvy with all of this stuff. It’s basically in my job description and, besides that, I’m a total nerd. So I’m pretty good at navigating even the worst websites. Facebook, however, astounds me. It never fails; every time I log in I end up logging out swearing about one thing or another.

I wanted to go complain to them to tell them to get their shit together, but I couldn’t even find a Support or Contact Us section.

I’m glad I have Lauren managing the account for Letters of Love. I just do not have the patience for Facebook.

I feel like I’m at the mercy of some unseen force right now. I swear someone is using a voodoo doll on me.

Saturday night as I got home from my little cousin’s birthday party, I got some super sharp and stabbing pains in my left shoulder. They were in the same spot and only lasted a second or two, but were enough to make me scream, cry, and made my knees buckle. I went to see my new GP on Friday and the nurse practitioner there said she would set me up an appointment with a neurologist. I assumed they’d call me with an appointment later on Friday, but they didn’t. Hopefully they’ll call me Monday, because I can’t take much more of this. I want answers and treatment and relief, and I want it NOW. I am going out of my mind. I’m afraid to do anything or go out in public; can you imagine collapsing on the street or screaming in the middle of the mall? I mean, this is just getting ridiculous. Something is wrong and someone needs to help me before it gets any worse.

I’m also waiting on my college to get back to me. The math/science director still hasn’t responded to my second email, and I won’t get anything until at least Monday. I think my next step should be the Dean; I mean, it was not my mistake and I refuse to pay for the mistake of someone who gets paid to advise students. He obviously gave me the wrong advice, so why do I have to put everything on hold?

Worst of all, Mike is still working third shift. We were supposed to hang out Thursday night (because he was actually off!), but he ended up sleeping through the alarm he’d set and didn’t wake up until one in the morning. He felt bad and I felt bad, but now he won’t be off again until next Thursday. I miss him like crazy and all I want to do right now is drive down there and bang on the doors until they let me in. Then I’d kidnap him and steal him away so that I can be selfish and snuggle in his arms until we wake up. I know he misses me too but somewhere along the line I became sentimental and now I feel like I’m gonna die if I don’t get to see him soon. What happened to the hardass version of me, the one who spat at the very mention of love? Oh. Right. She was one bitter bitch.

On top of everything else, “Jude” invited me to hang out tonight — uh, Saturday night, technically. She was going to have “Zeppelin” come get me, and since I was feeling sorry for myself (because of the Chronic Arm Pains 4.0) I said maybe I shouldn’t. She said she really wanted me to come, and then when said she’d call me back in a few minutes. I assumed she was going to ask “Zeppelin” if she minded picking me up, and that since she wanted me to come over and hang out so bad she’d call me back and make sure I hadn’t changed my mind, but she never called me back. I know I can’t make her give a fuck but really. She knew I wasn’t feeling good — I burst into tears the second she said “hello” when I called her — and yet she still couldn’t be bothered to call me back. This is the shit that makes me want to tell her to have a nice life. When I need her, she never comes through. And yet, when she needs me I am always there.

I love her kids to death and even though I know she’ll pull the You Can’t See the Kids card if I try to stop being friends with her again, I don’t know what else to do. Every time we go through this, she promises to try harder and blahblahblah, but it never happens. We always end up at the same place. She claims that she cares but when it comes down to showing me she cares, she just can’t do it. There’s always something more important.

Anyway, it’s almost 3 am and my arms are killing me. I knew I’d pay for this but I needed to get shit off my chest.