I have Lupus. Simple enough to say, a nightmare to live with, incredibly difficult to explain.
My hair is falling out, thinning out, breaking, splitting. My skin has rashes that I try to hide. I get abscesses in some very painful places. My joints feel like they are trying to dislocate. My muscles feel like they are torn, tearing, or have been stretched too far. Be they sun rays or indoor lighting, UV hurts me, everywhere. I’m exhausted, so exhausted. Depression is a constant battle, be it from dealing with the pain, or the “side” effects of this disease. I catch everything, as my immune system is constantly fighting itself.
I am constantly aware of my mortality.
I am very aware of time and how precious it is.
I am dying a very slow and very debilitating death.
One that I refuse to give in to, to bend to, to bow to. It will have to drag me away kicking and screaming.
That long paragraph above, is just a glimpse into my world. Are you sure you want more? Because I am about to give it to you.
3 years ago I had thick hair. THICK hair. And so very much of it. It took two ponytail holders to gather it all. The weight of it when wet was intense. It would cause me to sweat in cold winter months, no hat required! 2 years ago I noticed that it was splitting a lot. The strands looked thinner. The drain was filling with washed off strands during every shower. The wide toothed comb had a handful even after the shower loss. I was shedding everywhere. A year ago I started cutting myself bangs because I could see my scalp shining through the front. Not that this provided much camouflage. As I stated in a blog before, I can no longer dye my hair, as my scalp starts burning within seconds of the dye touching my skin.
I have blotches, rashes, and breakouts covering my arms, back, stomach, breasts, hips and thighs. I’ve tried creams, lotions, antibacterial soaps, organic, oils… nothing helps. It’s bad enough to have body issues, but then your body gives you even more. You can tell when I’m having “good skin” because I’m willing to show more of it during those times.
The abscesses used to stick to my inner thighs. Then last February they started to migrate. I ended up in the ER getting emergency surgery. I had three abscesses that combined to make a super abscess. (Humor is my shield from the remembered pain, and the humiliation that I still have from this.) It went from my thigh, through the crease of where my groin and thigh meet, and into my groin itself. It took ketamine through my IV to get me under ENOUGH for them to lance and drain it. I was still crying and screaming through that, and I will have to write a blog for the shit it did to my head some other time. The doctor was worried that it was septic, or would be at any moment. He didn’t understand how I was walking, let alone working, through the pain it was causing me. I have a high pain tolerance. The problem with this is once that tolerance is breached, it’s damn near impossible to get on top of. The amount of “liquid” and tissue they drained from this super abscess was the size of 2 grapefruits. It took almost two boxes of gauze to pack it. Have a strong stomach? Google abscess images. I don’t recommend it though. I now get them on my thighs, groin area, hips and breasts fairly regularly- i.e.: three or more each month. I try to lance them myself or pray they rupture on their own, as doctors are expensive, and if I catch them before they get that extreme, they only take about a week to heal.
My joints always feel sensitive anymore. I have to be cognizant of what I’m doing when I walk, turn, cross my legs, as any sudden or sharp movements can piss them off in a heartbeat. During a flare, it takes everything I have to walk to the bathroom, even more to sit on the toilet, and mental chants to stand up from it again. None of my joints can rest on hard surfaces, as this will make it almost impossible to move them again anytime soon. Lying is painful. Standing is painful. Sitting is painful. Are you aware of every joint in your body? Not just your shoulders, hips, and knees. But also, every joint in each finger, toe, or in your wrists, each part of your spine, where your ribs meet it? Now simultaneously pull them apart, shove them together, fill them with extra fluid, set them on fire and make them ice. Every. Single. One. Breathing too deep makes my back and ribs feel like they are about to explode. I’ve learned to breathe shallowly because of this. Sneezing makes me want to commit suicide on the spot.
My muscles. You know how your muscles feel after a tough workout, when you’ve been sedentary for a long amount of time? That’s a normal lupus day. Flare days they feel like they are stretched so tight that they are going to snap like an old rubber band, but it will hurt more than getting smacked in the face with an unexpectedly broken violin string if they do. It feels like my body is held together by fraying strands of thread. Simultaneously it feels like huge ropes meant for sails on boats and heavy lifting. Hot and cold. Pulling me apart at the seams, and yet smothering me in awareness of their weight and pain.
UV lights. They are everywhere. Stores, work, home, the sun. And I am very photosensitive to them all. But I have no choice but to deal with all of those, daily. The problem with this is that they cause more flares. They cause the blemishes, rashes, breakouts. They increase the hair loss. They compound the problems I have, but I have to live within the UV world. Sunscreen is in everything I use to moisturize, for a reason. I don’t get the butterfly rash on my face, but I can tell that it’s waiting for me. Even a couple of hours in the sun make my nose and cheeks become incredibly red, and I breakout there constantly. As a child and teen I could sunbathe with no issues, oiled or not. In the last 5 years, even 30 minutes in the sun, with sunscreen and a hat, and I’m burned like I spent days on the beach without a drop of lotion or clothing. (And here I’m planning a beach vacation, I’ll get to that.) My eyes burn so badly at the end of each work day. By Friday I am ready to gouge them out myself. Sure, I could invest in blackout curtains and find a night job that’s lit only by candles… I’m sure that’s a viable option, for my family’s well-being as well.
Exhaustion. This is not tired, lazy, unmotivated, in need of a nap. I am talking complete and utter, “I cannot keep going. It’s so hard to breathe, think, live. I feel as if I am moving and thinking in slow motion. I have nothing left.” That kind of exhaustion. I sleep so hard and so deep that I am aware of nothing, unless I move or shift, then the pain wrenches me wide awake. And my nights are full of this deep bottomless sleep to I just made a pot of coffee with redbull instead of water and drank it all kind of awake. During normal non-flare nights, anything will wake me. Any noise, a light coming on somewhere, a creak, the wind changing directions. So this deep, nothing but the pain in my body can wake me sleep is not normal.
Depression is a lying beast. But when it has truth combined with its lies, it becomes a monster that is sometimes too hard to fight. I know I’m sick. I know there is no cure. I know it is shortening my time on this planet. I know it’s damaging the quality of the time I do have. It is destroying my body, not just under the surface, but in my own line of sight. It tells me I am hard to handle. Maybe even too hard to handle. It tells me that people that I love find me a burden. It tells me that friends and strangers are tired of hearing about my woes. It tells me that I will never make anyone understand the hellish cage I am trapped within, that is my own body. It tells me that this pain is now a part of my forever. It tells me that it’s only going to get worse. It tells me to make it easier on everyone else and just let go. It asks me if this pain is really worth the extra time? It asks me if I want to continue being a burden? Do I really want everyone I love to watch me deteriorate and die? It asks me just how much will be too much? It tells me to give up. Just give up. You don’t have to hurt anymore. You can stop this. You can let go. But my own voice is still strong enough to say no to this whispered demand. Because the pain will lessen again. I will be my version of okay again. I have so much left to live for, and going now is NOT an option. I hope that voice never fades.
I have three kids. I work in an office where other people have kids. I shop for food and clothes in the real world. I have friends that have kids, and jobs, and shop with the masses. No matter what, I am constantly subjected to one cold or another. The flu, a virus, bacterial crap. There is no avoiding this. And mix that fact with my lack of a properly functioning immune system, and you get a Goddess overcoming one thing or another, all of the time. I have had so many steroid shots I should look like the Hulk, but in a more flattering green tone. I have had full blown pneumonia 4 times in the last 3 years. They all started with a sore throat and a runny nose. My body is so busy fighting itself that all of the things it should be fighting are welcomed in with promises of tea and cake. What takes a normal body 3 days to overcome, has taken me the same time in weeks to finally dispose of.
I just keep going. Not always because I want to, but because I have to. I have three amazing little men that I brought into this world, and I WILL see them become men. I WILL see them learn, grow, thrive, explore, wonder, mature, discover, dream. I made myself that promise, and I do NOT break promises. I made myself a bucket list of things I want to do, see, discover, enjoy, and try. And my kids are mixed into a lot of those self-made promises. One of which is to play with them on a beach. And even though that few days in the sun are going to cost me, even though it’s going to hurt me physically, it will heal me mentally.
Because I wish to dance in the sunlight, while I still can. And trust me when I say, you will see me dance.