Sunday, June 11, 2017

It's never* lupus! (*it's totally lupus)


I avoid talking about this as much as possible, but lately I have been bombarded with insensitive, cruel, ridiculous, and flat-out nonsensical comments, snide remarks, and scrutiny from a few people. I loathe discussing medical issues because actually having a name for the symptoms that have plagued me since I started college is a relatively recent development. It's hard to undo 8 years of feeling like a hypochondriac or a crazy person, and hearing things like "your foot was fine yesterday, you didn't injure it, but suddenly it hurts so much you're limping? Yeah, okay ::eyeroll::". I don't like to advertise when I go to the hospital , results, medications, new symptoms, old symptoms, any of it! If I am at the ER and concerned people are blowing up my phone or fussing around, it makes situations much more stressful. I have a myriad of doctors and specialists to talk about this shit with, after all, and it's too much to just pile on people. I am constantly afraid that the people I love and become close to will drop me because, again, during a flare I am mostly inaccessible and can't respond to anything except maybe phone calls. Texting is torture during the months when my finger joints are too swollen to bend, and many written messages go unanswered. I keep my explanations of my medical issues simple and vague so as to not annoy others, and only mention something when it is strictly necessary. Certain commentary as of late made me think that maybe my tendency to not say anything means that most people don't realize how crippling flares are and for how long. No one sees me during a flare, they see me when I feel fantastic and am packing in everything I can while I can. So maybe some people just think I am flaky, and it's my fault if they don't get that I don't WANT to miss events, don't intend to ignore anyone, and certainly don't drop off the map for fun. 

Or maybe the small but vocal minority of ignorant jerks are just getting under my skin and this post is totally unnecessary, but in any case I figured it wouldn't hurt to write a little bit about it and shed light on a disease I knew nothing about either. I do plan on continuing a small series of posts about it if I can.






Well, I am 25, but 24 wasn't much different. I was not going to school full-time at 24, or graduating, or studying for the GRE, or applying for jobs, so in that regard it was easier because a flare didn't have the chance to start before a final, or before the GRE was scheduled, or a job interview, or whatever else could fuck up my entire future. I haven't had the luxury to lay on a comfy bed and watch TV during any of this though, so I wish that is what I did on a Saturday, or ever. Even just during the peak of a systemic flare it would be nice to have anyone around to take over, and allow me to lay until I didn't feel like I was set on fire and thrown at an oncoming train. When the SLS symptoms subside I eagerly get back to regular life- getting all the errands, cleaning, schoolwork, studying, self-care, laundry, replying to friends and family, visiting friends, and of course seeking fun new adventures to vary my daily afternoon adventures with Gavin. I run, jump, hide, laugh a lot, give pony rides, play different characters, and just do anything that will make my son happy and create amazing memories. It's a happy and satisfied type of tired, and I have always thrived when I stay ridiculously busy.

Sooner or later... a stress triggers a major flare (in this case, the car accident/concussion after my final job interview). A stress can be just emotional stress like divorce, death in the family, or moving, and it can also be a physical stress, like getting a different illness, being up all night with a sick baby for multiple nights, an accident or injury. It feels like a cruel joke that after something stressful, when I am just about to scramble to catch up on everything I missed, my immune system goes, "nope not done yet, ATTACK ALL THE THINGS!"

It then proceeds to attack harmless and healthy parts of my body that I would quite like to keep, like joints, internal organs, skin, fucking bone marrow. Whatever. When that happens, it's called a systemic flare. I had two before having Gavin and they were misdiagnosed as kidney infections (but of course the cultures never were positive).  After pregnancy, SLE went into overdrive and my immune system decided it all had to go, especially my kidneys. Fuck those smug, blood-filtering assholes, right?

On those days, I can't even convey how much pain radiates from everywhere, and how just walking to another room feels like running a marathon I didn't train for. It starts with fatigue so intense, that I suddenly can't stop myself from falling asleep at naps with Gavin. Then if I wake before him and walk to another room to get clothes to shower, I have to lay down there to rest and end up sleeping the rest of his nap. I fall asleep in my day clothes when I go put Gavin to bed, with makeup on, TV left on, food left out.... it's insane. My eyes are more sensitive to light, I hate the sun even more than usual, and then intense nausea and vomiting start days before a severe flare also. I know for sure I am fucked when I wake with a high fever, shaking, migraine, my hips and spine ache from the inside out like someone scooped out the bone marrow inside, and my fucking skin hurts. Anything touching me burns and stings. My shirt resting on my back will feel like sharp needles. Oh, yeah, and my kidneys start bleeding and leaking more protein. This last time the malar rash even showed up for a few days all over my chest, neck, arms and face. Remember, anything can be affected and a long list of other things go wrong, and they vary between flares. Lupus likes to attack the skin so to add insult to injury, I get ugly patches on my face that take forever to fade. The peak of the flare lasts several days, but I am knocked off the grid for at least a week each time.  Of course, my usual, much more common  and mild flare symptoms are also present when the severe flares occur. This is the swelling and pain of all the joints  fingers, hands and feet. My index fingers and thumbs on both hands have always been the worst affected and become totally unusable at the worst flares. To get an idea of what life is like with just a mild flare, try to do anything without your index fingers and thumbs. If you slip and use one of them, or HAVE TO use on to save a toddler from killing himself, make sure to immediately smash it with a hammer!😉

Forget about putting on pants, and if they make it on there will be no success trying to button pants with dead hands. Wrangling a toddler includes preventing suicidal stunts and changing a small squirming human, and doing the basics on those days is so beyond difficult and feels like I'm bartering with the devil for strength and legitimately trading years off my life to complete minor tasks. When the Bunch was still a baby, those bad days were spent on the carpet all day together. My neighbors were there when I needed Gavin picked up and moved from the living room carpet to his bedroom to nap. Then he became mobile....but luckily on those terrible days, all I had to do was open the front door and let him play with his friends. If he booked it towards danger, my fantastic neighbors could outrun him and carry him back. 

Now, it's just me and my tot, even on the worst days of a flare. Help is so rare since moving, that I used to have to take him with me to the ER and change diapers in my hospital bed with an IV in my arm. Now I can't take him with me, so I end up letting things get dire before I go to the ER while I wait for someone to be available to watch him. I'm not going to lie, sometimes I am overwhelmed by jealousy for women who have their own mothers around to be loving grandmas and help out. . I refuse to let him suffer because I feel dead and crippled, so I dig deep. Barter some more. I get creative with activities like making mud puddles, painting, or let him roam all over the parked car and "drive" it. Whatever it takes so that he doesn't notice too much that mom is not his usual energetic playmate.

 And you know what? At the end of the day, I'm much more proud of myself on the days when the house is destroyed, the laundry is scattered, when I'm in PJs at best (often no shirt because it hurts), my hair is gross and standing up in different directions, cooking is minimal, the to-do list is growing, and I look like a shit, lazy person and mom to an outsider. I'm proud because on those days, it takes all of my effort, pain, and Herculean strength to ensure my little human is changed, fed, safe, learning, engaged, and most of all, happy and giggling at whatever "lazy" or "stupid" or "messy" things I pushed myself through.

The rest of the days, and thankfully still the majority of days, are the ones when I dress up, get everything deep cleaned, crossed off the list, run after an Energizer Bunny toddler in public getting a myriad of errands done, and take said tot out again after nap for at least 3-4 hours to explore a new park or two.  I look like I have my shit together, but those days are a delight and an absolute fucking breeze in comparison. I'm just me those days, I can think clearly, I can see, I can jump, run, wear clothes, button jeans, open jars, and feel like myself . During a flare, when all I want to do is curl in a ball of pain and cry until it's over, I don't. I may look like a disgusting, shitty, lazy, "bad mom", but those are the days when I prove to myself that I am fucking supermom!