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.
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.
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.
chronicallyjill 