My name is Karyna and I’m a Sri Lankan American woman who works her tail off in a field she loves with amazing coworkers; is surrounded by fabulous friends and family; is pretty awkward; and likes to laugh, sing, and dance. I also just happen to have Mixed Connective Tissue Disease (MCTD) or as I like to call it, “We’re not quite sure what you have because your symptoms don’t fit neatly into any one category.” ? The MCTD I have is a mix of Rheumatoid Arthritis, Myositis, Lupus, and Autoimmune hepatitis. I’m pretty much always in pain but I’ve learned to numb myself to it. I have an extremely high pain tolerance now, apparently. Sometimes MCTD causes me to forget my words, overheat (especially my face), tire me out, etc. I also have the autoimmune version of hypothyroidism, Hashimoto’s, which adds to the symptoms. They diagnosed me with interstitial lung disease a few years ago and tried to add Fibromyalgia and Sjogren’s disease to everything. My response was, “Is it going to change my treatment? No? Then don’t even THINK about adding that to my chart. You treat people who have Fibromyalgia like it’s all in their head. It was hard enough to get you to take my other symptoms seriously. No thanks.”
I’ve been in the hospital several times due to extreme flares. My last stay in 2015 was definitely the scariest. I couldn’t walk, was bedridden for several of those months, and nearly kicked the bucket about 5 times there due to a mix of allergic reactions to medications and other things that were already happening due to the disease, but I’m here! I survived and I’m currently working for a wonderful employer in pretty much my dream job. I also have wonderful family and friends who support me through everything and kick me in the butt when I need it.
I’m so happy to be alive and truly appreciate everything I have, even on my crappy days. I’m glad I can see a change in the way we discuss physical disabilities as well as mental health issues. It’s pretty amazing to see that happen, and I’m grateful to be a part of it.
This is one day in my life. I apologize in advance for the dry, slightly awkward humor.
5:31am. Yup. Got to get up for the day because I can tell that I’m already low on spoons which means everything will take longer… especially a shower and dressing after the shower because I can’t free-boob it as my chest isn’t tiny enough. Putting on a bra is a process in itself, but it’s even worse when my skin isn’t dry.
Haven’t heard of the spoon theory? Check it out!
I just went to the dentist a few days ago but I have to go back because of cavities. Eek. I researched, though, and apparently it’s par for the course with MCTD. Do you think I can convince them to give me multicolored fillings? ?
Last year, around this time, I ended up in the hospital and then a physical rehab place for a few months due to crazy complications with the disease. I wasn’t able to walk and was pretty much bedridden due to cracked ribs, a broken tailbone, and a blood infection. Apparently I’d had the broken tailbone for a while but I have extremely high pain tolerance and had just attributed the pain to the MCTD. These are all the meds I had to take to control the different symptoms. Yiiiikes.
Now I just drink this tea! No more meds (except for levothyroxine). This is Tibetan Baicao Tea – disgusting to look at and pretty gross to drink but I don’t have to take pain meds anymore. I drink this tea in the morning, a bunch of water during the day, and I’m golden. Apart from endless bathroom trips, I couldn’t be happier with it. I’m not recommending this for everyone at all. This just works for me and now I have way less chemicals in my body. I’m pretty sure the injectable drug I was on for the arthritis portion of the MCTD did a number on my body. The prednisone didn’t help either. Cracking my ribs by coughing too much?? Seriously? Yeesh. I know I behave like 90 year old sometimes but does my body need to reflect that? ??
6:55am. Time to head to work! Woop! Lots of paperwork to do — progress notes, intake stuff, etc.
My work bag — The phoenix is one of the symbols for Scorpios but it is also my spirit animal. I have one tattooed on my back as well. My mom was NOT happy when she found out. Yes, I’m still “scared” of my mom. She’s a “Curry Mom.” They’re intense! ??
Work planner! I love this thing. It has awesome quotes in it and helps me organize the craziness of my work days.
⅓ of my work life is spent at an open computer at work — not very ergonomic but I haven’t requested accommodations yet. Oops.
And ⅓ of my work life is spent in the car. This is my normal view.
The blue “feeling great” thing is my back support for the car. It helps ease the pain a lot. My next car is going to have adjustable lumbar support, dammit!
Thank God for “princess parking.” (What? She’s on a throne and blue is super close to the royal color of purple.) When I’m out of “spoons,” it’s so helpful to be able to park closer to a place. I still get embarrassed sometimes and think that I need to exaggerate my limp even more because of the stink faces I get from people who see a young woman getting out of the car, though. ?
I know it shouldn’t bother me, and I should just make the “suck it” sign, but I’m a people pleaser.
My Nook! Yup. Still in the car — as evidenced by the bottom half of the Honda symbol. If I get to one of my sessions/appointments early, and don’t have calls to make, I read. I love reading so much but carrying books in my bag make it that much heavier, which is no good for the pain. This is nice and light. Plus, I now have a crap ton of books at hand. How much is a crap ton, exactly? No one knows … ?
Yas! Got to love doors that are easy to push open when my hands are tantruming on top of having to pee like a racehorse.
My janky left hand. Note the swan neck deformities on the fingers and the pinky that won’t straighten. I can still make a fist, though!
My left wrist. It’s been frozen in that position for years now. Makes certain things difficult. Thank goodness I’m right handed.
That’s the tightest fist I can make with my right hand. The only thing I regret about this picture is that I picked off my nail polish first. ??
These are half the stairs I walk up and down each day at work. (The second half is hidden by the wall to the right). At the beginning of the day, it’s not so bad, but after walking up and down them several times? The body is for sure tantruming at that point.
Body: “I don’t wanna!!! You can’t make meeeee. I’m tiiiiiired.”
Pepper spray. Total badass. Yup. Has nothing to do with the fact that I’m community-based for my job which means I’m not always in the safest areas and I am far from a fast runner. One of my colleagues bought a collapsible baton. That requires much too short of a physical distance and might hurt me more than the other person, because arthritis. ??
8:00 pm and I’m finally home for the day. It was a long one but super productive. Finished my paperwork. Saw several clients. Actually ate lunch. Good times.
Look over and see this unholy mess on the passenger seat. Should I be an adult and take the stuff in? Nah. I already did plenty of adulting today. Also, note the Ricola. Because of MCTD and Sjogren’s, I have to keep lozenges ever at the ready. Dry mouth and dry eyes. Having super dry eyes is kind of nice, though, because I don’t produce tears properly. Now when I cry, no one can tell! I get to pretend I’m an emotionless-robot. “You will be assimilated!” LOL Cybermen? Doctor Who? No? …. Ok, anyway. I kind of just look like I might be on drugs when I cry, due to red eyes and snot trails. So charming.
The two giant pills I take each night. When I was in the hospital, I kept becoming tachycardic. They noticed that my magnesium was always low and had to keep giving some in an IV. Now, I just take 2 magnesium pills per night. It lowers my heart rate to the 60s or 70s instead of being in the 100s all the flipping time. I’ve also noticed two other wonderful side effects: reduced anxiety and more regular bowel movements. ?
My fancy sonicare diamondhead toothbrush. I gave in and spent the money and it’s improved my teeth so much. I still have issues with them and probably always will due to the MCTD but my teeth are much healthier now. Plus, it’s purple!
Look at my super profesh socks. It entertains me to have socks like these Doctor Who ones in my shmancy work shoes. My feet and legs are super swollen at this point due to all the walking but it’s the end of the day. Just taking a brief “sitting on my butt” respite before trudging up the stairs at my house.
I made it up the stairs! Look at my awesome u-shaped body pillow. Yes, I sleep with it upside-down because I refuse to get rid of my memory foam pillow. Sleeping with it this way supports my shoulders AND legs (which tend to spasm at night now). This means I can sleep like a starfish, just like I used to.