Off-topic: Digital vs. Hand-drawn

With all the new technology and innovations in the art world, I’ve spent a few years trying to figure out where I stand as an artist. If you know me personally, you know I spent a few years in college studying digital art. I’ve muddled in just about everything. My ultimate goal in school was to become a concept artist for environments in either movies or video games. My goals have shifted since the Lupus came about, but I also believe that as time goes on, I would have developed the same disenchantment for digital art that I have now. Here’s why.

Is it just me, or do DreamWorks and Disney pump out a new CGI movie every year? When was the last time they drew something? The average cell-animated movie took 3+ years to complete. But these computer-animated movies keep coming one after the other. They’re a dime a dozen. They all look the same to me. Sure, they all have some funny dialogue sprinkled here and there, and voice-overs by the flavor of the week. But there’s just something missing. These movies feel like the “Dollar Store” versions of their predecessors. 

Obviously, video games are a different story. You can’t hand-draw a video game. Computers have to be involved. This is why I feel so conflicted on where I stand. There have been some amazing realistic-looking creations that came from a computer. And it’s not just the computer, you have to be a good artist AND handy with technology to be able to do these things. It definitely takes a lot of ability on the artist’s part. I should know, I’ve spent a lot of hours, some of them frustrating, working in 3D studio Max. It takes a long time for it to feel as natural as brush and canvas. Some days, it just doesn’t.

In the more frustrating hours, I remember wishing I could just DRAW it. Like, on paper. With pencils. Especially when your final digital product is so…intangible. Especially if you don’t back it up, and then back-up the back-up. Hold your breath if the power goes out.

I guess personally, I feel like if sweat and elbow grease didn’t go into it, and I can’t hold it when I’m done, then I don’t feel accomplished.

It’s not to say that digital art doesn’t have an important place in the art world, because it does, but in commercial settings the “old-fashioned” way is being swallowed by computers. Employers and companies aren’t looking for people who like to do it the old way, because it takes 3 times longer, is more expensive, and isn’t as malleable, changeable, or redo-able.  

It’s unfortunate that digital art and hand-drawn art aren’t able to coexist. I guess that’s where my issue lies. It’s not that digital art isn’t awesome in it’s own right, I just don’t want to see the magic of things hand-drawn die out in pop culture because someone wants to make a fast buck.

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My thoughts on #Fibromyalgia

I don’t want to offend anyone. Please realize that when I say that I think Fibromyalgia is a bullshit diagnosis, I’m not saying that your pain doesn’t exist.

Onward.

Before I was diagnosed with Lupus, about a year to be exact, the local rheumatologist told me I had “Fibromyalgia” and put me on Cymbalta. She didn’t bother to run any tests, or even really examine me. I listed my symptoms and that was the extent of her assessment. The Cymbalta didn’t help my pain.

It took until my toes were turning black for her to test for something else.

Being “diagnosed” with Fibromyalgia can be a very dangerous thing. As a person with multiple health issues, I know how easy it is to just assume new symptoms are caused by the diagnoses I already have. Fibromylagia puts the brakes on investigating other causes. It’s “mysteriousness” leads people to believe that everything they are dealing with is already being treated to it’s full capacity. 

My current rheumatologist doesn’t believe in Fibromyalgia as a diagnosis. When I first started seeing her, and told her about my Fibro diagnosis, I got “You don’t have fibromyalgia” in an “oh brother” sort of voice. 

I believe there to be many diseases that present “fibromyalgia-like” symptoms, therefore I feel fibromyalgia to be a symptom, and not a disease by itself.

I urge you not to let a Fibromyalgia diagnosis keep you from continuing investigating what is really wrong. You could have a very treatable illness and not know it. While my Lupus isn’t exactly “very treatable” at the moment, I’m on infusions that are protecting my organs. I can’t imagine the damage I would have now if I had just stuck with the “Fibromyalgia” diagnosis.

Rude doctors, and their rude staff.

I’m don’t have any religious beliefs, but I do think some things just are or aren’t meant to happen, and I go with my intuition when I’m in a questionable situation.

Today I went to see the neurologist for a nerve conduction study. I’ve never liked this neurologist. I never felt like he listened to me. I’ve always had to wait in the waiting room for a long time to see him, despite him not having very many patients. I chose to keep going to him because he and my rheumatologist are friends, and it’s a lot easier when you have 2 doctors that actually talk to each other. The waiting room itself is very closed off from the rest of the office. The front desk is hidden by a small privacy-glass window. They keep it closed almost all the time. If you tap on the window they seem to get irritated. I don’t know why the window is there, but it certainly isn’t for patient privacy, considering you can hear what should be private phone calls between the staff and patients. There’s a sign-in sheet right outside the window, although I’m not sure why, since they never open the window to look at it. They never look to see who is sitting in the waiting room. You get there and sign your name and wonder if they even know you’re there. This happens every time, but today was above and beyond.

I signed the sign-in sheet, tapped on the window, and a lady opened it and said “I’ll be with you in a minute” in an annoyed voice, and closed the window again. “A minute” never came. I sat there for an hour and a half. They were calling in other patients, who seemed to be equally annoyed with the wait-time, including one guy who was there on lunch break from work. He probably never got to go back to work. I gave it a good long chance for the situation to fix itself. I already had a headache when I got there. The pain I was in all over became unbearable, so I left.

“I didn’t know you were there.” She said to me over the phone, which confused me, because I thought knowing was part of her job. Apparently, no one pulled my chart, so they never came to look for me. She tried to say that I should have tapped on the window, but I did. How many times and ways do they need to be told? I guess I’ll send up smoke signals, because signing and tapping isn’t enough. Not to mention the fact that when you do tap, they get bitchy. If the privacy window wasn’t there, and I didn’t feel so cut off from the rest of the office, they might have acknowledged my existence and fixed the situation.

The reason I left is because I was there to get a nerve conduction study, where they insert acupuncture-sized needles into various points on the body and run electrical currents through them to test nerve function. It’s not a fun test, and some other patients I’ve talked to said that it left them in pain for a few days. I had already sat in the car for over an hour just to get there, which is a lot for me in itself. My pain is so bad these days that riding in a car at all takes a lot of willpower for me. I had to talk myself up to do this testing this morning. The drive, the electrical needles, and the drive home. I knew I was going to feel pretty awful. So for me to even be there is a big expense. People don’t realize the level of pain I’m in all the time, and the things that people do daily that they take for granted that are hard for me because of the pain. After sitting in the car and then sitting in non-ergonomic chairs in the waiting room, which totaled about 3 hours, I was in so much pain that I couldn’t have handled the testing. There was no point for me to stay, for me to tap on the glass for the second time and remind them I’m here, and have them be snotty and shut the window. Telling them the first time didn’t do me any good, what was a reminder going to do? They were too busy yapping about persimmons.

If I can’t trust this group of people to slide open a window and “Oh yeah, Jill’s here” then how can I trust them to be running electrical currents into my muscles with needles?

The whole thing just felt so wrong. Everything in me told me to leave, so I did.

I hurt everywhere. Even though nothing got done today, it was still ‘a doctor trip to LA’ and it will take me a day to recover from it, like it always does. I still had to pay $15 for parking. Still had to pay for gas and the rental, yadda yadda. It makes me angry that this doctor and staff doesn’t realize what they did to me today. Today wasn’t the only day that I’ve sat waiting forever in that office, but today was the day I said fuck it. I was going to be done with this doctor after this test anyway because of the waiting, and the total disregard for just about everything, but today was the icing on the cake. And as awful as it all was, a statement needed to be made. They literally had so little shit together that they forgot that I had to be tested that day. They were too busy hiding behind privacy glass and socializing. How many people have they done that to? How many other people sit there in pain, or are elderly, or take time off from work?

I have the name of another neurologist from my rheumatologist, who is closer to me, and hopefully has his shit together.

Benlysta 1-year

Yup, I’ve been on Benlysta for a year. *Throws confetti* and whatnot.

I had my infusion on Tuesday. I got a massive headache from it despite drinking as much water as I always do. Can’t win ’em all. I got a bad dizzy spell during my infusion this time for some reason, I’m not sure why, but it could have been the food I ate for lunch, the infusion, or just a headache precursor. It scared me a little. I’ve never been that dizzy before. Luckily it was relatively short-lived. I was done with my infusion in under an hour which is quicker than I’m used to. I thought maybe that could have caused the dizziness too. Normally it takes an hour and a half or so.

I talked to the doctor for a while, and we talked about what to do next. If the benlysta isn’t working then she will want to put me on something else, but she also wants me to investigate other possibilities for my chronic pain, like MS or other neurological or possibly missing-enzymes type stuff. If it’s not the lupus making me hurt the way I do, then it doesn’t make sense to switch me off the benlysta. My blood work looks good, and I do have what she called a “solid lupus diagnosis” letting me know that I’ve tested positive for all the antibodies that lupus creates, which I thought was interesting. She takes good care of me, but is a little quiet when it comes to the sciencey side of things, so sometimes there’s a little factoid like that about myself that I wasn’t aware of. I don’t know the ins and outs of lupus the same way a doctor would, so I don’t expect her to get all sciencey, but I do think it’s interesting and I would like to know about my own body as much as I possibly can. My organ function is good, and everything seems to be kept at bay. It’s hard to know about white-cell counts since I’m also on the steroids for Addison’s, I’m not sure how much those influence my labs even though I’m only on a replacement dose, with occasional stress-dosing. But overall I feel like crap, so something doesn’t add up somewhere.

She gave me the name of another neuro who will probably be more thorough in thinking outside the lupus box. The first neuro wasn’t interested in investigating anything outside of my lupus. I’m still going to his office for the EMG/nerve conduction study tomorrow, which I’m hoping can tell me a little bit about what’s going on.

My weakness/numbness/clumsiness has been especially bothersome lately. The widespread nerve pain rudely wakes me up in the morning. My sympathetic nervous system likes to go whacko when I’m just relaxing on the couch. None of it makes much sense yet. I’m just crossing my fingers that they figure out what it is so I can feel like a person at some point, instead of an episode of House.

 

#lupus nerve pain

The pain has been bad today, and hard to control (it’s never easy, but especially today). I woke up this morning, and the best way I can describe it is that if pain was a noise, the volume is too loud, and it affects your whole body, and you have to walk around dealing with it. I feel really stiff, too. It’s just this powerful ache that is like nails on a chalkboard. It’s like I don’t want to hear sound, or feel clothes brush against my skin. It’s like if I feel one more sensory feeling, I’m going to explode.

I tried the medicine and hot showers thing. meh. It’s relentless.

I’m pretty tired today, too.

I’m trying not to get too frustrated. It’s been really hard. I don’t want to walk around being a grumble buns. But it’s hard to be sunshine and rainbows when I feel like this. 

This week’s #lupus frustrations

There are a few topics I’ve been meaning to write about, but honestly, my short-term memory has been terrible lately. I’ll think about something I want to write and when I go to sit down and work on it, I can’t for the life of me remember what it was I wanted to write about. I’m not sure what’s causing my memory to just void everything. I’ve been stressed out a lot lately, my Benlysta is wearing off and I’m due for another treatment, and I was in PMS mode last week (not bitchy, just achy) All in all I feel like I’m just not taking in information, and you can’t remember what never went into your brain in the first place.
I’m having a terrible time focusing. Even right now I feel like I have to take breaks from writing every couple minutes because my brain is all over the place. I haven’t been able to read and I’m even having a hard time watching movies because I can’t focus. There are a lot of activities I’d like to do throughout the day that I just can’t do because I can’t focus. It’s really an awful feeling. No doctor has really stepped up to help my focus issues. It always seems to be something that isn’t important. But it’s something I struggle with all the time, and have been struggling with since about 6th grade. It’s getting old.
I went to the neurologist to talk to him about my ‘neurological’ symptoms. I feel like he brushed most of what I said aside, and was ready to blame everything on my lupus. That .always makes me irritated, because if I have some other type of disease activity going on, I want them to be looking for it. It’s easy to just assume it’s the lupus. I’d rather be on the safe side than the sorry side. I never liked this particular doctor anyway, I just went because my rheumatologist told me to.
He’s going to be doing an EMG Nerve Conduction Study to see if I have peripheral neuropathy from the lupus. I’m not looking forward to the test, I know it entails needles and electrical currents. It won’t be the worst test I’ve ever had done but I’d really rather get it over with. This doctor likes to schedule everything 2 weeks out for some reason. I don’t like waiting. I’m an impatient patient. I want it done and I want to know the results as soon as possible.
He told me I should go see a GI for my digestive motility issues. I’m not in a hurry to do that. If my EMG shows nerve damage, than there’s no doubt I have nerve damage that involves my stomach too. My stomach issues come and go. Some days I can eat a whole plate of food and some days I can barely swallow. I can just imagine going in to the GI and having a bunch of unpleasant tests done and have them tell me everything is normal just because my stomach decided to work that day. Nope, not doing it.
If I do have nerve damage, the rheumatologist will probably switch me from the Benlysta to something else. I used to be afraid of that idea but the Benlysta isn’t helping me. I feel awful. I wake up every morning feeling like I got beat up the day before.
With the Chiari Malformation stuff, I’ve decided that the specialist who deemed it ‘not chiari’ doesn’t know what he’s talking about. I’m going to get my records and mail them in to other specialists and see if they’ll take a look. My cerebellum is herniated 6mm and my headaches are unbearable. You do the math.
I probably sound like I’m writing from a place of frustration, because I am. I am absolutely frustrated. I feel like I’m not getting anywhere. I thought maybe this was a feeling I would be able to shake in a short time but it’s not going away. The doctors taking their sweet time isn’t helping either. What might be a month to them is an eternity to me. A month of sitting on the couch waiting to feel better that I’m not going to get back. I’m tired of the beating around the bush, and the maybe’s, and the tests, and the we’ll see’s. I’m tired of the ‘I don’t know why you feel awful’ and the ‘you should be feeling better’ and the ‘well it must be the other disease’ and the ‘your other doctor should treat you for that.’ I’m tired of tests coming up inconclusive. I’m tired of doctors telling me I don’t have something and then not trying to help me figure out whatever it is I do have. I’m tired of being pushed around by doctors like people who work at home depot “Nope that’s not my department.” Some days I think I’d just stay in bed if it didn’t hurt too much to lie there.

Congrats Red Sox. Don’t know what I’d do without you.