eyes and lungs #lupus #stillsdisease

I had 2 doctor appointments yesterday. It was a long day. I’m pretty tired today. I first went to the opthamologist for a follow up about the allergy eye drops and the contact lens samples she gave me. The toric lenses are pretty uncomfortable. I haven’t had a pair of torics that weren’t uncomfortable. To me, they’re like sticking window clings to your eyeballs. The edges are too hard and can feel the lenses all day. I tell eye doctors this but they always seem to insist on trying torics anyway, probably because they are more expensive. I gave them a try anyway and told her they were uncomfortable, and now I’m just going to go back to my usual lenses. My astigmatism isn’t bad enough for them to be necessary anyway.

My appointment with her was very irritating. I probably won’t be going back.

I had some time to kill between appointments. It was hard to stay awake for some reason, which is odd for me. I get tired but I never really get sleepy. I was wondering if the Humira had something to do with it. Also, the eye doctor was poking around in my eyes and putting all sorts of drops in without asking me first, and it made me have anxiety. I could have also been sleepy from that, since my adrenals make me sensitive to stress.

After that I went to the pulmonologist. He seems like a nice doctor. I did a few breathing tests that measure for asthma and lung capacity, and he also listened to my breathing. Those tests didn’t show anything, but since I have shortness of breath and a lot of tightness in my lungs, he is going to do a few more specific tests. He talked about lung inflammation from lupus, and that it doesn’t always show up on certain tests. He seemed certain that we could find out what the problem is without running a million tests. I also already had a chest x-ray and they took some blood.

Tomorrow I will be doing the breathing tests for the pulmonologist, and I will also be doing a stress echo for my cardiologist, so it will be a long day again.

Eyeballs. Enbrel. #lupus #stillsdisease

I’ve stopped the Actemra infusions and switched to once-a-week Enbrel injections. So far I’ve done 2 injections with the auto-injector. When the pharmacy fills my prescription I think they will be giving the prefilled syringes instead. The auto-injector hurts. It’s easy to use, it just jabs really hard.

A few days after my first injection I noticed my back muscles felt a bit better. It wasn’t miraculous relief but I was suddenly able to sit more comfortably after months of pain and weakness. I still feel hot during the day but I’m noticing I get the chills now, which I wasn’t before. I feel a little less uncomfortable in the fever department some days. Also, I had a few days where I didn’t have bladder pain. It was short lived, but it happened.

I’m going to continue with the Enbrel for 12 weeks and see what happens. My doctor is excited because Enbrel is much cheaper than the other medications that we were looking at, like the Kineret.

I went to the opthamologist last week. I haven’t been able to wear my contacts for the past few months, and they haven’t been very comfortable for years. I already use restasis but have been feeling like my eyes are still dry and gritty. I’ve been worried about having autoimmune inflammation in my eyes. I figured they would tell me I just can’t wear contacts anymore.

It turns out, for a change, that my problem is a lot simpler than that. I have allergies. I started using pazeo drops and for 2 days I’ve been able to wear toric lenses. I couldn’t wear torics at all before. Now I can see sharper when I wear contacts. Before, I was just using regular contacts. They were good enough, but not sharp. I haven’t tried wearing makeup with contacts again yet. I’m still giving the drops some time to work. When I put my contacts in yesterday, they still felt gritty for the first hour, but felt better after that. I’m hoping to get continued relief so I can wear my contacts more often. It’s nice to not have a pair of glasses on your face all the time, especially on headache days.

May and June stuff #lupus

I had my second Actemra on May 12th and I’m due for my next one on June 16th. It went well. I didn’t seem to get a headache like I did the first time. It has made me pretty tired though. I’m looking forward to the next one, and as always playing the waiting game. I don’t want to wish the year away but I’m antsy about getting these infusions. I want to get them done and know whether they will work or not.

My rheumatologist put me on Dexilant, which is a proton-pump inhibitor similar to prilosec/prevacid/nexium. He seemed irritated that my GI wanted to try to control my acid reflux with diet. I’m taking 60mg 4 times a day, which is a pretty big dose. The pharmacist wasn’t comfortable filling the prescription for that much and had to “file a report” and double check with the doctor. I trust my doctor over the pharmacist. So far I don’t really feel like I’m getting any relief. I’m still having reflux that makes me have asthma, still clearing my throat all day, still avoiding acidic things. It’s obnoxious and I’m tired of eating bland.

I’m going to see an opthamologist tomorrow about my dry eyes. I use restasis but I haven’t been able to wear my contacts in a long time. I feel like I have sand in my eyes. I like my glasses but I hate wearing them all the time. I just hurt so much sometimes that I can’t stand to have the weight of them on my face.

I’ve had this weird shivering problem since I got my period in April. That cycle sent me into a weird flare. At first I was cold along with it, but now I shiver when I’m not cold. I thought it could also be from stopping the Pamelor, but it’s been going on for too long now. It seems like it comes on around the same times every day.

I’ve had this odd problem for the past couple years where when I take certain pain relievers, they make me short of breath at night and I wake up over and over because I stop breathing. I was tested for sleep apnea about a year and a half ago and they didn’t find any signs of it.

Sometimes I have this breathing problem even when I don’t take those pain relievers. I’ve stopped taking them altogether, but still have “flares” of this problem. I’ve been having a problem with it all week and I don’t know why. It’s been awful. I haven’t slept much.

I went to a concert for my birthday a few weeks ago, and the light show was pretty intense. It occurred to me that I had the shivers pretty bad during the concert, and after, and just generally felt like crap. I didn’t think much of it since I always feel like crap, and since I had already been dealing with the shivers.

It also occurred to me that I played video games for a couple hours on Wednesday, and that night when I went to bed I couldn’t shut my brain off. I hadn’t been playing right before bed, but I saw flashes and colors when I closed my eyes.

On Thursday night, I put it all together. I went to bed, had all my usual meds and I was listening to music. I was a little wired. Sometimes that happens to me at bedtime. I was just trying to relax. But I suddenly had this horrible feeling come over me, like I just mainlined espresso or something (which I later realized was an “aura”). I felt pretty nauseated, and the shivers started. I tried to lie down with the lights off but I was having the breathing issue that kept jerking me awake. It all felt scary so I stayed up for a while, ate some food, drank one of those vitamin drinks. I never really did sleep much after that. I was twitchy all night. I remember the whole thing. I don’t really feel like I was “altered” in any way, other than feeling a little freaked out.

Oddly enough, my cat had been waking me up in the night all week. She absolutely would not leave me alone. It’s been driving me nuts. Apparently she knows something I don’t.

I had some epileptic activity when I was a kid. I thought I had grown out of it. I didn’t have the “fall to the ground and lose consciousness” seizures that everyone thinks of when they hear “epilepsy”. I had these spells of nausea, shakiness, and feeling awful, followed by sleep. They seemed to come on right after I would start eating a meal. I wouldn’t pass out. I didn’t take medication for it.

I’m worried that I might be having seizures again. I haven’t had an EEG in a while. They don’t always pick up seizure activity, but I’d like to have another one. I haven’t been able to explain why certain pain meds affect my breathing at night, but now I know some of them can affect seizure activity, as can stress and lack of sleep.

I’ve had a couple episodes during the day since Thursday night. I felt really crappy suddenly while I was in the shower on Friday. I had that aura feeling again Friday evening, followed by nausea and the shivers. I’ve been monitoring my blood pressure and temperature when it happens, both have been normal.

I have an appointment with my neurologist that I was originally going to cancel because I felt like he couldn’t help my headaches anymore. I’m going to keep it so I can talk to him about seizures.

I’ve probably had these symptoms for a while, but I’m so used to feeling like crap, sometimes it takes me a while to put things together, or to even realize that something is a symptom. I tend to blame symptoms on other things, not realizing they could be something new. It’s hard to wonder why you feel like crap when you’re so used to it. I’m now realizing all the things that bother me that point to seizures, and I feel dumb for not realizing this stuff sooner.

Hello, March #lupus #blog

On Monday I had an ENG done. I was pretty worried about it because I knew it can cause migraines and vomiting. An ENG is a test for your inner ear, and also your eyes, to check for causes of vertigo. I get dizzy when I look down for prolonged periods of time. It seems like it’s something that flares, because some weeks are worse than others. I’ve never been a person that got sick from carnival rides. I play video games regularly and have never had a problem with getting dizzy from them. However, I do get dizzy from riding elevators, oddly enough. They’re looking to see if I have any damage from the lupus in my inner ear.

The test can take up to 90 minutes. For the first part, I had to wear headphones that played a clicking sound in each ear pretty loudly while I turned my head to the left and right. I had electrodes on my chest and neck. The next series of tests involved following a red dot on a screen in the dark. I had electrodes on my face around my eyes. I didn’t have dizziness from either of these tests. The technician then had me sit up and helped me to lean back and turn my head quickly. This made the blood rush to my head, but I did not seem to get vertigo from this either. I also had to lie down on one side in the dark, and then switch to my other side, which also did not cause a problem.

So far no vomiting, and no headache.

The last part of the test was a bit more difficult. I still had the electrodes on my face. They had me lie down on my back and they irrigated each ear with cold water, and then warm water for 30 seconds. The first irrigation was the worst. The cold water in my left ear made the room spin. After each irrigation, I had to sit in the dark. I had to hold onto the chair. The last 3 weren’t as bad, and the warm water bothered me less than the cold water. The warm water feels hotter in your ear than it really is. Having water shot into my ear in general was uncomfortable. It made me feel a little panicked. I was glad when it was over.

I did not end up getting a migraine or vomiting from having this test done. I’ve had a sore throat since I did it, but I don’t know if it’s related at all. I’ll get the results when I see my neurologist.

I stress dosed my hydrocortisone to support my Addison’s Disease for this test. I always have a delayed stress reaction after difficult tests that night or the next day. It usually makes me feel shaky and lightheaded.

On Thursday I went to see an Infectious Disease specialist. My rheumatologist referred me to one so they could run some tests to rule out infections like Valley Fever, mosquito-born diseases, and tuberculosis. My rheumatologist is checking these for two reasons, to make sure I don’t have anything that could be causing my current symptoms, and to make sure I’m clear to start a new treatment. Being on other immunosuppressive drugs in the past could have left me more susceptible to these types of infections.

The ID specialist was nice enough. His office was really hot though. My face and my chest blew up with a blotchy red rash. My rashes come up so easily now. I have at least one episode every day. Doctors’ attitudes change when they see my lupus in action like that. It seems like it makes them realize the gravity of my disease activity. Sometimes I feel like some doctors don’t take my lupus very seriously, or they just don’t realize how ill I really am.

Prior to my rash making its appearance, he had talked about a couple vaccines he thought I should have. He mentioned the pneumonia vaccine. I’ve had a flu shot but I’ve never had the pneumonia shot before. I believe the pneumonia vaccine is good for 5 years. I didn’t object to it, I just didn’t realize I was a candidate for it, as it has never been recommended to me before. Being the age that I am, he also mentioned the HPV vaccine, and he seemed surprised that I had not already received that series of vaccines. That has never been recommended to me before either, and I have been going to doctors regularly for quite a while. I am for vaccines, but I am not comfortable with the HPV vaccine. It’s too new, I have lupus, and I have heard nothing but bad things about it. I did a little research online, and a common side effect is fainting.


I’m sorry. I’m not doing it. I don’t need to do something to my body that can’t be undone right now. My life is already upside down because of all my health problems. I don’t even have everything diagnosed yet. And sleeping around isn’t a top priority. Its not a risk I can take. I feel like at this point I’ll be lucky if I make it to 30 without catastrophic organ damage, or other irreversible complications from lupus.

Anyway, back to my point. The doctor got real quiet about his vaccine trip when my rash came up. It was a pretty violent rash, too. I think he felt a little bad after that. He was selling it so hard, and kind of judgmental about it too. I’m not going to worry about it right now. I’m gearing myself up for the next treatment plan, whatever it may be.

The ID specialist wrote me a prescription for a bunch of different tests, so on Tuesday I’m going to the hospital to get some blood drawn.

I’m also going to the cardiologist that day. I’m having high blood pressure even though I’m on blood pressure medication. At this point, I can’t even eat crackers without the tiny amount of salt sending my blood pressure through the roof. I’m considering asking them to do an ultrasound on my heart again to make sure there isn’t lupus activity there, and I also might ask for a referral to a nephrologist to make sure there isn’t a problem with my kidneys causing the high blood pressure. My urine always tests normal but I think it would be good to get some other tests run. I am concerned that I’ve had this sudden high blood pressure for a few years and no one is looking into why it’s happening. My blood pressure used to be great. It’s effecting what I eat and how active I am able to be, and it feels horrible. It certainly isn’t helping the headaches.

This week I am also going to see a dermatologist about my rashes. I might have to get some biopsies done. Then my rheumatologist will use all this information from the other specialists to figure out what kind of disease activity is going on so he can pick the most effective treatment for me.

When I talk to my neurologist about my ENG I am also going to mention that I am getting headaches when I chew, and I am also having pain in my face and nasal cavity that seems to go with my headaches, but does not feel allergy related in any way. I am also going to mention that while the imitrex is sometimes helpful for migraines, it makes my blood pressure go up and causes me to be dizzy.

My aunt flew in from Boston this week, and I saw her on Friday. I was pretty worried about spending time with someone who had just spent time in airports. I just had to trust that she was good at avoiding germs. There are a lot of things that I have to spend a decent amount of energy worrying about that other people don’t think twice about. It’s exhausting. Last time I had a flu I spent 5 days in the hospital, and my white blood cell count almost bottomed out. I didn’t even know I had lupus yet. It makes me worry about what would happen now, since I would consider my disease to be even more active now.

My current symptom check-list looks like this:
-Hot red itchy rashes
-pain, rashes, swelling and loss of range of motion in joints, particularly hands, knees, and neck
-constant heart burn
-high blood pressure, even with medication
-heart palpitations with no cause
-required bland diet
-chronic migraines
-headaches and jaw pain from chewing
-nasal and facial pain with some headaches
-dizziness when I look down
-chronic constipation
-burning when urinating with no infection
-eyes are light sensitive
-skin is sun sensitive
-drinking twice the daily recommended amount of water
-lower back pain
-muscle weakness, pain, and tremors
-numbness, cold, and discoloration in feet
-hair loss
-loss of sleep, usually from pain or heart burn (4am)
-dry irritated eyes, can’t wear contacts
-trouble with concentration, memory, and confusion
-trouble swallowing

That’s the thing about lupus. No two cases are alike. My rheumatologist has to make sure I don’t have other disease activity besides the lupus. I am hopeful that I will be on a new treatment in the next couple months. I’m not expecting a miracle, but a shorter list would be nice.

Restasis eye drops and Lupus.

You’ve probably seen the commercials for Restasis eye drops while you’re chillin’ watching TV. It’s not a very informative commercial as far as telling you how the drug works, and since I’m using them I thought it might be helpful to some people if I explained how they work and what to expect.

There are multiple causes of chronic dry eyes, some are autoimmune, in which case Restasis drops would be effective. I have Lupus, which is an autoimmune disease, which most likely raises my chances for having an autoimmune-type chronic dry eye.

Your immune system can attack your tear glands, which in turn makes them produce less tears, leading to dry eyes. Restasis is not a soothing or lubricating eye drop, it’s actually an immuno-suppressant. It works by telling your immune system to cut the crap, with the hopes of your glands healing and producing tears again.

I’ve read a lot of mixed reviews for Restasis. Some people get bad side-effects from the drops, like stinging, burning, and itching, which have been bad enough in some instances that people had to discontinue the drops. For some people, relief can take months, others seem to get relief within a few weeks. It seems to be case-by-case, and you won’t really know how they’ll work for you until you try them.

I normally wear contacts, and have for about 9 years. My prescription is -3.75, which isn’t too extreme, but I can’t see without them. I wear acuvue one-day moist, which I started wearing a few years ago because monthlies were getting too much protein build-up on them and they weren’t comfortable for an entire month. About 6 months ago or so I noticed my eyes were a bit dry, and it just went downhill from there. Just in the past 2 months or so I haven’t really been able to wear contacts at all. Even though they are called “moist” a problem with lenses that are made up of a higher percentage of water is, to stay wet, they have to absorb moisture from your eye. This is OK for people who don’t have dry eyes, but it hasn’t been working for me. I’ve been wearing my glasses nearly all the time now, and don’t get me wrong, I have a nice little collection of cute frames, but it’s uncomfortable for me to have the frames on my face all the time. My headaches are so bad that I can’t stand the weight of anything on my head, glasses, hats, ponytails etc, so I really miss wearing my contacts in these situations. I have super-lightweight lenses which definitely makes a difference but it still is a problem I fight with constantly. I have also given up wearing any kind of makeup, because my eyes are so dry the slightest little grain of anything causes huge irritation, and there isn’t a big selection, if any, of contact-safe eye makeup (no company wants that liability…) I don’t feel like I need makeup, but it’s something I enjoy from an artistic/fashion standpoint, and I miss having fun with it.

So, I took the plunge. I was really expecting them to irritate my eyes, but they don’t. I don’t get any of the side effects, which is pretty lucky. I’ve been using them for about 5 days and they seem to already be helping, which is lucky too, since I was expecting them to take a few months. I had a day this week where I wore my contacts and eye makeup, for about 8 hours, and I only had a little dryness. That’s definite progress. I’m still going to be careful how long I wear my lenses and skip makeup most of the time to give my eyes a chance to heal.

My prescription is written for a drop in each eye, twice a day, about 12 hours apart. They come in single use vials instead of the usual bottle, and they have no preservatives. It’s still too early for me to know how they will work out in the long run, but so far, so good. I’ll continue to write about how they are helping me. Also, if you wear contacts, it states that you should wait at least 15 minutes after using the drops to put your contacts in. I typically wait longer since I use the drops first thing in the morning, and I don’t like to put my contacts in until I’m fully awake.

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.


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.


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.


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:


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.


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.


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.


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.


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.



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.



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:




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.