The strangest chronic pain analogy I’ve ever written.

Remember your most recent trip to the grocery store? That awful music on the radio. That absolutely utterly awful drone in the background, that becomes the soundtrack to your grocery endeavors. It makes you irritated and you might not even realize it until you stop to think “Good god I hate this song.” How do people work all day listening to this shit? You would imagine that the employees become so immune to it that they reach a point where they don’t even hear it anymore.
I’m a grocery store employee, and my background-drone-music is pain. Day in and day out, I never get to turn it off. The only thing I can hope to have control over is the volume. Some days the volume is dull, and my built-up “immunity” to it allows me to not hear it if it is quiet enough. Sometimes I don’t even notice it until I stop to think, “Gee, I’ve been in pain for hours, why haven’t I done anything to treat it yet?” It’s not that I don’t know it’s there, or that I don’t know it’s living and breathing inside me every waking moment of my life, I just have a way of shutting it out to make it more managable, because that’s all I have control over.
A grocery store customer is especially sensitive to the drone music, because they don’t live in it every minute. They’re an outsider. It’s why your average healthy person whines about a headache that can be easily alleviated with tylenol, or why they whine about being sore from the gym, or bitch about how much their high heels hurt their feet. There exposure to the drone is next to nothing compared to a grocery store employee, because they get to turn it off whenever they want. The employees don’t necessarily want to listen to the customers bitch about having to hear the music. The customers get to shut it off. They get to leave the store, and go about their lives. But the employees also don’t wish for a customer to ever have to become an employee, either.
The grocery store employee is always fighting with the volume. The volume is easily influenced by outside stimuli and could turn up at any moment without warning. Some days the volume is so incredibly loud that it renders them completely useless. It’s just so loud you can’t hear yourself think. It stops you in your tracks. It takes you over and robs you of your ability to complete even the simplest task. It’s like wearing headphones that are too loud, and no one else can hear or see it. You’re expected to keep going on about your day as if you are not hearing the loudest, most atrociously high-pitched ear-ringing nails-on-a-chalkboard music in your life. There are ways to turn it down, or change the tune, but what if everything you have in your possession to potentially turn down the volume doesn’t work? Sometimes you get lucky. But sometimes you can hear it, even in your sleep.
You can never react to the too-loud-music in front of the customers. It’s not socially acceptable. They sometimes even seem to think that you are making up the music all together, and that it doesn’t exist, even though they’ve heard it before. Everywhere you turn, you are surrounded by customers, and you are not allowed to talk about the too-loud-music.
Unless of course, you’re a rebellious employee that is done caring about what customers think.
Let’s talk about the music.

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My heart, funny signs, lobstahs, and good karma.

Yesterday I went to see a new cardiologist. As you’ve read, the cardiologist in town was jerking me around, so I had my rheumatologist refer me to one in LA, which seems to be the only place where shit gets done, so I am now refusing to see doctors in my town. It’s easier to make the trip and get answers than it is to stay in town and get jerked around.

The cardiologist’s office is within Cedars-Sinai medical center, which is a pretty hairy place to be driving around. It was on the 10th floor, which is always a scary thought for me. I hate elevators. There’s something about them that messes with my spinal fluid pressure and makes me feel wobbly for 10 minutes after getting off. I went into the office, which had a pretty cool panoramic view, and did the usual fill-out-100-forms thing. 

The nurse called me back to a room, I put one of those awful paper gowns on, and she hooked me up to the ekg. While she was hooking me up, she started to tell a funny story about one of her patients who was a pain in the ass. Somehow we got to talking about women and fucked up plastic surgery, and I was laughing my ass off, but then I had to try really hard not to laugh when she turned on the machine. It only takes 30 seconds, but it was hard not to laugh with her in the room. She was really funny.

The doctor came in after that, and I told him about all the symptoms I’ve been having. He asked a few questions about my history, I’ve never smoked, don’t currently drink, never taken diet pills. He asked me if I ever did coke or amphetamines, and I laughed and said no. He said “You’d be surprised what people say yes to, it is LA.” I told him I don’t even have a cup of coffee anymore because I can’t. It makes my symptoms a lot worse.

I got dressed and went into his office to further sit and discuss my symptoms, and also my other health issues. He decided that I should have an ultrasound, a stress test on the treadmill followed by another ultrasound. They had an appointment open in 2 hours, and I took it so I wouldn’t have to go all the way back down there. My mom and I were both starving and had time to kill, so we decided to find a cafe in the hospital to get some food.

We left the office and got in the elevator, and the funny nurse followed us. I wasn’t really sure why, I thought maybe she forgot to tell me something, but there was another doctor in the elevator so she waited until he was gone. We got out of the elevator and she pointed down the hall to the room where they hold the stress tests. When there were no doctors around she handed my mom what looked like a $5 bill. She said “It’s nothing, just chips and soda money.” I didn’t know what to say. Between having to buy lunch and pay for a lot more parking than we originally thought, she said “This trip just got more expensive for you and I know how hard it is.” She ran off and took the elevator back to the office, and while walking to the cafe we realized she actually handed us $25. We couldn’t believe it. I still don’t know why she did it. I was just completely surprised. There are still good people out there, even if they are hard to find sometimes. I will most certainly be doing something nice for her in return. It wasn’t just free lunch that she gave us, it was comfort in knowing that there are good people out there, and they also happen to be the people taking care of me.

The cafe was pretty nice. It had a Hollywood photography flare to it. The thing I like the most about it was the menu listed the sodium content of each dish, so I could watch my sodium intake, especially since I was about to have tests done. I ordered a turkey burger and sweet potato sticks, which were sort of like baked fries. They were surprisingly good, and I’m not even into sweet potato. All in all, it was decent food.

After we ate we walked around a little, checked out a few of the hospitals gift shops. We sat on a bench outside of one of the shops, and I noticed this sign:

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I’ll let you make your own jokes about it. I laughed for a good 20 minutes.

Anyway, 6 o’clock rolled around, and it was time for my test. I was a little nervous. Not scared, but just wanting to get it over with. They took me into the back of the office in a room with a treadmill and no window. It was stuffy. I put on another one of those awesome paper gowns, this time it was more like a shirt. The technician explained the tests to me, and I picked up on his New England accent. My mom is from Massachusetts, and both of us just have to ask him, “You’re not from California, are you? Where you from?” He said he was from Maine. He talked about going back, and missing the food, especially “Lobstah” and “steamiz”. I still haven’t had the opportunity to go to New England, but everything about it feels like home to me because my family is from there.

He did the first ultrasound, then the cardiologist came in and looked it over on the computer screen. They hooked my chest up to a bunch of leads and it was time for the treadmill. I didn’t know until then what exactly I was going to be doing. I started out with a brisk walk, and continued to walk that way for about 5 minutes. My legs started to burn, and my lungs were burning too. It was exhausting. The incline went up, and I had to walk faster for the last 2-3 minutes. It was hard, but I was glad to not be running. I watched my heart rate go up the entire time on the computer screen. When I was done, it was time for another ultrasound to see what my heart looks like when it’s working. My lungs hurt, my legs hurt, and I was pretty tired. The doctor said that everything looked really good. There isn’t anything structurally wrong with my heart, no inflammation, and I have good circulation around my heart. He said that my symptoms are still a mystery, but that they aren’t a ‘sinister mystery’.

So the Lupus isn’t attacking my heart. I won’t have to switch treatments, I can stay on the Benlysta. I’m relieved to find out that my heart is OK.  I’d still like to know why I’m having weird symptoms, but it’s not something that I have to be afraid of anymore. 

A few products that make things easier

I’ve been thinking about this blog for a while, and I really feel like writing it today, so here it is. I trust that all five of my readers (lol) know that I’m not being paid to endorse anything, that these are my honest personal opinions, and I hope I can point you to a product that might help you in some way. Hope you enjoy.

A troublesome symptom I’ve been dealing with the last few months are dry eyes. I wear contact lenses, and it was getting to the point where I couldn’t were my lenses anymore. I also had to give up wearing any eye makeup for a while, because the tiniest thing in my eye would result in major irritation. Then I found these eye drops. They literally changed my life.

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They’re Blink Gel Tears eye drops. When you put them in, it feels weird and they blur your vision for a minute, but if I put them in right before I put my contacts in, they make a nice layer of moisture in between the lens and my eye that lasts all day. I’ve been able to wear my lenses all day again, and to wear some eye makeups again. I live in a pretty dry climate and it was making my eye problems a lot worse. I was having a hard time with silly things like sitting next to a fan or reading right before bed. My eyes were just too dry and it was painful. Now that I have these drops, I’m not having as much of a problem. They aren’t soothing to eyes that are already irritated, but if you use them in the morning and before bed, they are a great preventative measure. I’d recommend getting some soothing eye drops to go along with these on the days your eyes are irritated and you need immediate relief. But the gel drops will help you have less ‘irritated eye’ days.

I have a lot of chronic pain, a good portion of which is muscle spasms. The best treatment for muscle spasms in my opinion is heat(not ice, because ice makes muscles cramp up). I’ve used Thermacare heatwraps for years and still swear by them.

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These patches are like portable heating pads. They produce actual heat, rather than other patches that produce a menthol burn. They last for up to 8 hours, and can be stuck just about anywhere you need heat. They come in a few different shapes and sizes, but the neck/shoulder ones are the ones that work best for me. Stay away from the generic versions of these heatwraps because they don’t get nearly warm enough to provide any relief. Thermacare brand costs more than generic but they actually work and are worth the extra couple bucks. They almost always have a $1 off coupon inside the box anyway. Read the directions and warnings accordingly to decide if they are right for you.

Ever since being diagnosed with Addison’s disease, and having to take maintenance steroids, I’ve had a problem with sweating and underarm irritation. I’ve tried a bunch of deodorants but I’m hooked on this one.

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It by no means solves the issue, but it doesn’t further irritate my skin like some other deodorants, and it’s like a cream deodorant. It’s a happy medium between a solid and a gel. My underarm irritation gets so bad that I can’t wear ladies tshirts. The way they tailor the sleeves on ladies tshirts causes me severe irritation. The sleeves are about half the size of regular tshirt sleeves so they bunch up under my arms, and there are a lot of seems in the armpit area that chafe my skin like crazy. I’ve had to stop buying these kind of tshirts, which is really hard to do because it’s all they make for ladies now. I wear a lot of tank tops, and dolman/flutter sleeve shirts, and unisex/men’s tshirts that have regular sleeves.

If you have Chiari Malformation, you know how much it hurts to open your mouth wide, and on bad days, even open your mouth at all. I have a hard time brushing my teeth sometimes. I still do it everyday even when it hurts, but it sucks. To make sure my mouth is absolutely as clean as it can be on the days where it hurts to open it, I use a water flosser. Mine looks like this:

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I also have some trigeminal neuralgia pain, which compounds the problem. A water flosser is essentially a tank and sprayer. The sprayer has a few different heads, one like a tooth brush, and one that is thin and long like the one dentists use. The thin long one is the one in the picture and the one I find most useful. You can turn up the water pressure enough to spray off plaque without the pain of having to open your mouth wide enough for a tooth brush. In fact, with the water flosser, you don’t have to hardly open your mouth at all. Another plus is that you can mix water and peroxide or water and mouthwash in the tank for added cleansing and cavity protection. And even still another plus is you don’t have to floss with floss. You don’t have to worry about irritating/injuring your gums.

Due to a combination of health issues, washing/hand sanitizing, and living in a dry climate, I get hands dry enough to crack and bleed. I dealt with this by wrapping them in cloth bandages with A&D ointment at night, but sometimes that wasn’t good enough. My mom picked up a little travel lotion to keep in my bag, and it’s strange how much it has been helping.

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I’ve been using it just after I use hand sanitizer, and suddenly my hands are no longer cracked and bleeding. They aren’t even dry anymore. For the first time in a while, they’re actually soft, too. Give it a shot.

My hair has been falling out for a long time. I’m nowhere near bald, but I’ve lost about 1/3 of my hair thickness since…well…I don’t know. I’ve just had thin hair for a long time. It started really bothering me in the last 6 months to a year. First it was head sores, then those disappeared with the start of Plaquenil, then my hair was falling out from taking methotrexate, which I am not on anymore. The plaquenil could be the cause of my current hair loss. But I found a couple products that seem to be thickening my hair.

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L’oreal Everstrong Thickening shampoo, conditioner, and leave-in spray tonic. I’ve been using them for about 2 months. I don’t wash my hair everyday, because I don’t have the energy to blowdry/style it everyday (which is probably better for it in the end). But I am noticing a lot new hair growth, and it just overall looks thicker at my scalp. I also take biotin 10,000mcg once a week (don’t want to overdo it) so I would imagine that is playing a role too. I recommend giving these hair products a try. They smell nice too.

I don’t know if it’s the lupus, the side effects from the lupus meds, or both, but I get spells of really bad dry mouth. Sometimes it’s so bad I can’t sleep at night because it makes me feel panicky. And of course, the dry climate makes it way worse.

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This helps with the dry mouth some. It’s not perfect but it’s way better than regular mouthwash, and with regular use it lessens the chance of getting dry mouth to begin with. It’s also really great for lupus mouth sores, which I luckily don’t get anymore.

As you’ve read, I play guitar, and have a hard time with pain when playing. I’ve lost most of my calloused skin on my fingertips from not playing as much, and to get back into it, I bought some Gorilla Tips For my fingers. They are basically silicone thimbles. They’re really thin. I use them after I’ve already been practicing for a while and my hands start to hurt. I don’t put them on immediately because I still want to build callouses, but I use them after a while because I want to continue my practice session without pain and developing bruises.

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You can use them for other stringed instruments too. I use them on my mandolin as well. The only problem I run into sometimes is they make it hard to bend notes and slide up and down the frets. But they elongate my practice sessions and help me become a better player, so I deal with it.

Another thing for my guitar I like to have is a string winder. I can’t sit there and twist my wrist around forever to change a string. These work like a crank and make it much easier and faster, and this one doubles as a wire-cutter, and a peg-puller-outter (the technical term) if you have an acoustic guitar that has string pegs.

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Onward,

I love to read, and had to give it up for a really long time, partly because I have terrible concentration issues, and partly because it’s so hard for me to find a comfy position to be in while reading because my pain is so easily influenced. Then I found this neat invention from lovely Australia called “The Book Seat” and it has since helped me be more comfortable while reading. I can only lie on my sides because of the Chiari Malformation (looking down at a book is a huge no-no for me) so I lie on my side to read, and holding a book up like that can become quite tiresome and painful after only a few minutes, especially hardcovers.

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It’s like a pyramid shaped bean-bag with a concave side to nestle your book into, and it has a clear plastic sliding guard to hold your book in place. It can be leaned to the side a little bit for when you’re lying on your side. It works with novel-sized books and textbooks. My only complaint is that it wasn’t heavy enough to support the heavier books without tipping over, but it has a zipper in the bottom so you can fill it with more sand or rice if you wish to make it heavier. I used rice and it’s perfect now. It also works great with tablets and e-readers for when you want to be hands-free. I use it frequently with my Nook Tablet. I ordered The Book Seat from amazon.com. Please get one if you’re an avid reader. They’re really a great invention.

And last but not least, my exercise and pain management program:

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Yup. My Xbox. Unfortunately I haven’t been feeling well enough to use the kinect, but when I do, it’s great. The Your Shape 2012 fitness game with the Kinect Sensor has yoga and tai chi that gets me off the couch and moving, even if it’s just a 5 minute session. It’s great for people with lupus who can’t overexert themselves at a crazy gym, but need a little motion in their day. It has gentle beginner stuff as well as some butt-kicking cardio. It’s great because you can do it in the privacy of your own home on your own time, so you’re not held-up by a scheduled class at a gym. It differs from exercise DVDs because the Kinect sensor tracks your body to make sure you are doing the yoga and tai chi poses correctly, and there are exercises that are more like games and it makes it a lot of fun. The game tracks your burned calories. I’ve never found that to be accurate, but getting up and moving is what counts. You aren’t constrained to just fitness games either. You can get up and get moving while playing arcade-type games like fruit ninja, various sports games like diabolical pitch and basically any sport you can think of, dance games, there’s even one where you get to march around a haunted house.

On the days that I don’t feel well enough to play kinect motion games, I still play regular controller based games. It has been an important coping mechanism when it comes to chronic pain. It’s fun, it feels productive, and it takes my mind off of it. It also gives me a good subject to chat to my friends about. It makes me feel like I’ve accomplished something, which might sound odd to the average person, but if you’re in pain and sick enough to be stuck on the couch instead of being what one of my stupid doctors called “a productive member of society” you’re glad to have an activity where you can say you accomplished something, even if it’s just “getting to the next level” or whatever. So until my Lupus is entirely in remission, my job is to play Xbox and allow my body to heal and get healthy. There are other things I do to feel productive too. A few chores when I’m able to, and I do a lot of art. Walking my dog. Writing my blog. Reading makes me feel productive too. And of course, studying Japanese, when my brain allows such nonsense, which I believe will be useful in the future for part of my career.

That’s it for now. If I find more helpful products, I will write about them. I hope there is something here you will find useful. Feel free to ask questions in the comments.

muscles.

For the past 2 days, I’ve had wicked stomach pain around my navel. At first, I thought maybe I was having stomach cramps as a side effect of the Benlysta infusion I had on Tuesday. But no matter how many different stomach meds I tried, the pain didn’t go away. It didn’t go away when I had hot tea or food. And it also didn’t and still hasn’t moved, which I thought was weird. It occured to me this morning that it’s not a stomach ache, it most likely an injury in the muscle wall in my abdomen. I don’t recall what I did, perhaps something that strained the muscle over the weekend when I was deep-cleaning my room, or when I tried to scoot the recliner in my living room over absent-mindedly. It felt just like a bad stomach ache for the first 24 hours, and now the pain has let up, the muscles feel tired and strained. It kept me up last night, mostly because I wasn’t taking the right medicines for it. Since I know now that it’s a muscle issue, I have been taking painkillers, and it helps. I rode in the car today and it made the pain flare up. The pain is nearly gone now but I feel like I did about 900 sit-ups.

It’s obvious I have muscle atrophy from missing out on exercise because of my lupus symptoms, especially since the cardio issues started. I should know better than to push, pull, or pick up anything heavy, but sometimes I just do it without thinking about it. I guess I really learned my lesson this time, I certainly won’t be doing that again. I’ve never had anything like this before and I don’t know how long it will take to heal, but I’m gonna really have to baby it, because I don’t want it to turn into a hernia or something.

Some sleep would be neat-o. And to not be in pain anymore would be awesome too, since I’ve had bad headaches along with this nonsense. I feel like I’ve been a writhing ball of pain for the last 48 hours.

Benlysta #6

I had my 6th infusion yesterday. It went well, as it usually does, without the aggravation of talking on the phone with the pharmacy like last time.

I’ve probably talked about what an infusion is like before, but I’m just gonna run through what it’s like again.

It’s about an hour’s drive each way from my house to the office where I get my infusions. My rheumatologist’s office is actually in Beverly Hills, which can be interesting in itself. It’s not my cup of tea but I do manage to see some funny things while I’m there. I have to get my infusions in Los Angeles because it’s not something they seem to offer near me, and the doctors in a big city tend to know more and have the latest treatments when it comes to complex and rare diseases. Travelling isn’t a big deal I guess, it’s something I have to do to get the best possible treatments. I sometimes have a hard time with it though. With the Chiari Malformation, my neck gets really stiff and I get a lot of pressure in the back of my head from sitting too much. I do ok dealing with it on the way out there, but on the way back, when I’m almost home, it gets hard to deal with. I’ve tried lying down in the car and it helps the pressure, but it unfortunately gives me a headache. Some trips go really well, and others just give me a headache.

When I get there, we park in the parking garage across the way, run across the street, and take the elevator to the second floor of the building. They usually call me back as soon as I get there. I sit in the doctor’s actual work office, in a recliner (which unfortunately isn’t as comfortable as it sounds) and they wheel the IV cart in. They poke me with a needle and insert the line (the RN is really great at doing this, doesn’t really hurt and I don’t even have a hole in my skin you can see and it’s only been a day, always thankful for someone who can do it well). Before they hook me up to the IV bag, they draw blood through the line. They always draw blood before an infusion to check out how the last infusion is effecting your body. They are checking to see how your liver is handling it, and checking to see if the Benlysta is lowering the lupus activity. After they draw blood, they give me tylenol and claritin, because benlysta can give you headaches(like I need another cause, heh), and the claritin is just an allergy precaution. Then, at last, they hook the line up to the bag, and you’re stuck there for the next 60-90 minutes, depending on how long it takes your bag to empty (definitely make sure you go pee right before they hook you up, ’cause pushing around an IV tree to the bathroom is not a good time, and neither is holding your pee forever). I also recommend bringing some good books, your tablet, ipod, an awesome mom, just something or someone to keep you company while you’re sitting there, or else you’ll just be staring at the wall for a while. Sometimes infusions can make you have a funny taste in your mouth, so it’s good to bring some mints to keep you from having that ‘bleh’ taste in your mouth. I like the Ice Breakers Duo fruity mints. You probably won’t really feel anything while getting your infusion. Sometimes I feel a little warm, but I never know if it’s the treatment or the fact that I’m heat sensitive and my doctor keeps her office at 75-80 degrees F (23-26C)…I tend to hold heat in for whatever reason. I’ll be sitting there in my tank top and my doctor is like “Aren’t you cold?” and I’m like “No, its hot in here.” It partially has to do with sitting in the sun in the car on the way there. Like I said, I hold in heat. It sucks.

Once the bag is empty, they remove the line, and give me a snazzy bandage that doesn’t stick to my skin, it only sticks to itself (like florist’s tape) so I don’t have to worry about the adhesive ripping my skin off.

After the infusion is done I wait a while, and the doctor comes in to have a chat with me so I can catch her up on all the day-to-day things that go on. This time, we were talking about getting me in to see a cardiologist she works with, so I can finally get some answers on why I am having the heart/chest symptoms (see other blogs). She said that I tested positive for an antibody that sometimes attacks the heart (RNP), but that my ultrasound didn’t seem indicative of any sort of inflammation or otherwise negative activity that she could tell, but she also wants to have her cardiologist check it out because it can be tricky to spot. Benlysta doesn’t protect your heart so it would mean switching treatments if something was going on, and I’d really rather not have to do that, some of the other drugs just sound scary. I’m a little anemic, which always seems to be a bit of an issue for me, and I talked to her about it over the phone and I meant to bring it up to her while I was there, but I forgot. It’s hard to remember everything. “Keep a notepad” I know, I know. I get tired of doing that. Plus, I am lucky if I can remember to bring the damned thing with me half the time. Anyway, I did read online that sometimes anemia can cause chest discomfort and heart palpitations, and also cold hands and feet, so it had me curious. I started taking a supplement after I read that, can’t say I feel any better or anything, but it’s only been about a week since I started it.

Back to the infusions, they don’t make me feel weird after. Usually, just tired from riding in the car. Sometimes though I notice when I get an infusion, my throat glands get sore and I get the butterfly rash during the actual infusion. I didn’t seem to get that this time, although I noticed a little gland soreness when I got home. I don’t think my face flushed though.

Something that is important to remember about benlysta is to drink a lot of water before, during and after. It helps ward off the headaches that it causes. Since my ride in the car isn’t just a skip down the road, I tend to subconsciously avoid drinking water so I don’t have to hold my wee-wee all the way home. I don’t mean to do it. But it results in a terrible headache and I have to make a conscious effort to drink water. Last night I ended up with a headache, but it seemed to go away after a bunch of water and lying down. It wasn’t as bad as my chiari headaches, that’s how I know it was the benlysta. Chiari headaches don’t just ‘go away’ per se. Once you get a chiari headache you’re sort of fucked for the rest of the day.

So the day after an infusion, I usually feel somewhat worn out. Not sure if it’s the medicine or the trip or all of it. I make the trip sound bad, but really, it’s not. It’s relatively a quick hour. But it’s still tiring. I got in the car today to pick up my brother from somewhere and I had that “I feel like I was just in the car forever” feeling. I was pretty tired after a few errands, and it could have been leftover, but it could have also been the cardio/shortness of breath issues I’ve been having. Sometimes when I have an episode of that, I’m just suddenly so tired I can’t stand. It’s been happening even when my heart rate is normal (and my bp is always normal no matter what’s going on). It feels really awful to be out somewhere and just be like, “Man, I’m too tired to stand anymore all the sudden.” and it becomes this agonizing wait to sit down.

That’s really it for now. It’s bedtime and my cat is yelling at me.

TTFN

Lupus/Chiari and being an artist.

I started some quick sketches today for an idea I have for a children’s book. I grabbed my giant sketch pad and sat on the couch and went to work. I got so lost in what I was doing that I didn’t realize the terrible posture I was in. I’ve had a headache ever since. Looking down or being  hunched over for long periods are a pretty terrible position to be in when you have chiari. Once my neck muscles knot up, it’s pretty hard to get them to relax for some reason, and sometimes can result in headaches that last for days. It’s unfortunate, but I’ve been dealing with it for a while and I’m used to it.

I’ve been drawing for…well…ever. Since I could hold a crayon. I remember being 2 and drawing a stick family, and impressing my family with how accurately I portrayed their characteristics. Whenever any adult asked me what I wanted to be when I grew up, my answer was always “an artist”. It has stuck with me my entire life, and it’s the area of my life where I am absolutely sure of myself.

Colored pencils were probably the first medium I used where my art started to take shape and really look professional. I became pretty good at blending colors and creating depth. I started to explore other mediums, and thanks to my mom, discovered acrylic paint. I can’t say I have a preference between the 2, but painting is easier and always seems to surprise me when it comes to what I am able to do. No matter what you paint, or what your style is, it always looks good, because paint looks good even if it’s messy. Van Gogh and Monet were messy when you think about it. I always feel like I nailed it when I do a painting, even if I didn’t stick to my original vision. 

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I still use and love colored pencils, but since developing chronic pain, they have become difficult to use. It takes a lot of elbow grease to blend color, and to even put color down on the paper. It makes my joints hurt a lot after a short time. I have a hard time with repetitive activities like that. With paint, it doesn’t take that much muscle to put down and blend color, and also doesn’t take as much pre-planning. I can usually just dive right into it.

I have some Professional Prismacolor markers for cartooning and crafty things. They’re in between colored pencils and painting for me. They lay down color without a lot of effort. They can still tire my hands out after a while, but I can work with them for a decent amount of time. They’re very saturated and put down dark colors, even the pastel ones are dark, so if you’re not looking for something heavy then I recommend trying another brand, but if you’re just doodling (professional level doodling, of course) they’re great. I would love to own some copic markers, though.

I have experience working with clay and filming claymations. It was one of the most fun art experiments I have worked on. It made me want to major in animation, and I did start out with computer animation as my major, but I realized it wasn’t for me. Not because I don’t enjoy it, but because I can’t handle being on a computer all the time. I found out I have hidden talents in web design, after effects, photoshop, and 3D modeling, and I really enjoyed being in the classroom learning new artistic skills. After a few semesters of it I knew I couldn’t keep going with it. Chiari and computers just don’t mix, and my back and neck were in knots all the time from it. I didn’t even know at the time that I had chiari, I just knew I was a tension headache person.

I have a hard time sitting and doing regular art for long periods, too. It gives me tension headaches, but I don’t have to be in the same posture the whole time I’m working like I would on the computer, so it’s easier to work around. I’m still planning on majoring in art of some kind, and having a career path in art. If I do a little of everything, I don’t have to worry about not feeling well enough to finish my work, because I can switch it up. If I can’t sit and draw that day, then I can stand and paint, or brainstorm stories. 

Another reason I chose to stick to my roots rather than keep going with computers is because computers just suck sometimes. You know how they are. They can be extremely frustrating to work with, and I just remember thinking sometimes “Man, it would be easier to just draw this by hand.” Insert various expletives here.

Art is who I am. There’s never been a time where I ever felt like I had to give it up because of my health issues. It’s just not an option. It would be like giving up eating. That’s not to say I don’t take breaks from it sometimes, but there’s always a new art idea on the horizon.

Here’s some of my work:

ImageImageImageImageImageImageImageI‘m in the middle of this one right now.

Lupus, Chiari, and being a musician.

I’m including chiari in this post because I think it partly effects my ability to play. Tell me what you think.

when I was around 9 I took up the clarinet. My school had a music program and after debating between clarinet, flute, and drums, I settled on the clarinet. I didn’t want to play the highest instrument they offered, and I didn’t want to carry a heavy snare in parades. From then on I spent about 2 years in their music program. I could sight-read music, and play songs from movies. I eventually gave up going to the music programs because it started to become more demanding. They started making us come after school as well as pulling us out of class. I was too tired to be marching in a field with my instrument at the end of the day.

A few years went by, and at 12 I decided to take up guitar. I was kind of tired of blowing into an instrument. It would make me tired and give me a headache sometimes, so I opted for something that didn’t require your lungs. The church where my mom worked was giving guitar lessons. They let me borrow a guitar since I didn’t have my own, which later became my guitar, because the guitar teacher suddenly moved, and he had borrowed it from some school to give to me, and I don’t know, I just have it now. Anyway, it’s a Fender Squier classical acoustic (nylon string). I’m unsure about the model number and all that. Decent guitar, and carried me over many years of practicing, but not exactly the guitar for the type of music I like to play. Steel strings are more the sound I’m looking for, and I later bought a Tansen at a pawn shop, which is apparently a big guitar brand in India, and hard to find in the US. It sounds great, so I’m pretty happy with it. The tuning doesn’t slip, either, which is probably my favorite thing about the guitar. Also, steel string guitars have a slimmer neck than classicals, so it’s been a nice switch for my hands. I can also play standing up now. Classical guitars don’t have strap hardware(at least mine didn’t), so I always had to sit to play before.

I have an electric guitar that I got as an 8th grade graduation present, so it’s got some mileage on it. It’s an Ibanez gax50. It’s great, but it’s pretty heavy. I’d love to invest in something lighter, and that isn’t neck-heavy, because it droops to the floor and it’s annoying. It’s still my baby though.

Playing has proven to be difficult, but I’m extremely stubborn, so I refuse to give it up. For starters, I’ve completely lost the ability to read music, and have never really been able to get it back, no matter how hard I try. Tabs make things better and worse. I can learn songs but then I completely skip over learning to read music. I think the chiari effects my memory, because I seem to have a really hard time learning new things. I even have a hard time learning new songs, which can be frustrating, because by the time I learn the song I am absolutely sick of it. The other thing that makes guitar hard is the fact that my hands are terrible. They cramp up real easily, and I feel like I can never play for a long enough time to build up the callouses on my fingers so the strings don’t bruise them. The chiari also effects my dexterity, so I have been unable to play anything real complicated because of all these factors. And singing and playing at the same time is just impossible for me. My brain doesn’t allow me to do 2 things at once. I just have a really terrible lack of clarity in my head a lot of the time. It’s been a real challenge, but I’m not about to give it up anytime soon.

I’ve been dealing with a lot of new numbness and tingling in my fingers lately. They get so numb I lose my control and I can’t do anything that requires fine motor skills, like play video games or button a shirt. It’s painful and I don’t know why it’s happening, but it’s making guitar that much harder.

I took up the mandolin a few years ago, which I love, but it is very hard on my hands. The strings are a lot harder to push down than on a guitar, especially in the lower frets (closest to the headstock) I’d really love to learn Irish Jigs, so I’m keeping at it, no matter how much my hands despise it.

I’ve taken a few piano classes, both of which I failed because I didn’t understand music theory. The teacher sort of sprung it on us right before the semester ended instead of teaching it to us the entire semester, and it just didn’t click for me in 2 weeks. I got to a point where I was starting to be able to read treble clef, but then bass clef messed me all up. I haven’t played piano in a while. I’d like to learn to play the right way, without a teacher who made me feel a lot of stress and pressure. One of the reasons why it didn’t stick with me is because when I’m nervous I don’t remember things.

And, of course, playing can be physically taxing. I can’t sit or stand for long periods of time without my neck and back knotting up, so I try to keep practice around 20 minutes. It’s hard to learn anything really well in 20 minutes.

I feel funny telling people I’ve been playing guitar for ten years. I certainly don’t have ten years worth of skill. But I do have ten years worth of love for it. So I guess it evens out. It’s been both frustrating and enjoyable, and I hope I can get to a point where it’s no longer frustrating or painful to play. I know my hands definitely need more exercise. My brain probably needs more cognitive exercise as well. I’d really like to do something with music, so I will keep at it so I am able to make it happen.

I would really like to take up the drums at some point. It’s something I’ve always wanted to do, and something that just seems to naturally make sense to my brain. I am unsure how my body will handle it since I’ve never played before. I think that when I am able to exercise regularly without adverse effects, then I am probably ready to take up the drums.