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!















Monday, June 29, 2015

The F Word

Fat.

My entire life I always felt fat. Obese even. I noticed how my thighs touched or I would pinch my skin in front of the mirror and just cry because I felt so huge. I couldn't understand it. I ate right and worked out and always the girl in the mirror looked so fat. My ass. My boobs. My thighs. Everything! 

Looking back at photographs, I don't think I have ever been fat. I just didn't believe it though. I wasn't perfect and I wasn't happy with my body.

I just gave birth to my son almost 2 months ago. I felt so comfortable with my body  (usually...) when I was pregnant because I accepted that I was not in control. I could control what I ate but ultimately that baby had to grow, and I had to grow, and I felt adorable with my baby belly. I loved it! In the back of my mind though, I kept thinking "what happens after? What happens if I can't lose the weight? What happens if I have saggy skin and stretch marks?" I didn't want to dwell on it, but I was wondering if I would become very depressed or if I would ever be happy with myself again. 

Well, the fateful day came and I met my son. It was by far the hardest, most incredible thing I have ever done. My body did that. My body created this little boy who stole my heart. My body got him safely out. My body continues to keep him alive with breastmilk. My body, the one I always hated, created and sustains life. 

I am about 8 lbs away from my pre-pregnancy weight, and it's more like 18 lbs from my ideal weight. You know what? I have never felt more beautiful. Sure, there are a few stretch marks here and there. Sure, my belly hasn't recovered from having the abs literally ripped apart by my uterus. The scales say this is the largest I have ever been but it doesn't bother me. If I went shopping before and I had to look at larger sizes, I would leave and starve myself until I fit into the smaller sizes again. It would ruin my whole week. The Man just took me shopping for my birthday and I hardly glanced at the tags. If it fit well, I was happy.

My body didn't let me down. It did what it was supposed to do. It bears the signs of bringing my snuggly, sweet boy into the world, and I feel fucking beautiful.
I love my imperfect body.

Sunday, July 13, 2014

Sunrise Sunday

If one year ago you told me what my life would be like right now, I would have had you committed to an insane asylum. It would go something like this:
You: "A year from now, you're going to sell cars, and you're going to be really fucking good at it. On your days off you are going to model and be happy with your body. You are going to live in Phoenix with someone you don't even know exists yet. When he walks into your life, you'll know what I'm talking about. He's going to treat you like a fucking princess 24/7. Oh, and your new friends? Oh my God. Just wait until you meet your friends. They would jump into a volcano for you if you asked them to."
Me: ::dials 911:: "Operator? Yes, I have a raving lunatic at my house. They are talking crazy. Send help."

It's funny how life changes...very slowly, and then all at once.
........


Here's a sneak peak of my last modeling shoot with Duane Furlong! 








Monday, June 23, 2014

Supergirl


Don't you think that it's boring how people talk,
Making smart with their words again, well I'm bored,
Because I'm doing this for the thrill of it, killin' it,
Never not chasing a million things I want,
And I am only as young as the minute is full of it,
Getting pumped on the little bright things I bought,
But I know they'll never own me.



Something has changed. Maybe it's a culmination of a myriad of small changes, but the picture of my life is entirely different now. I think that quote from Perks of Being a Wallflower is true- we accept the love we think we deserve. That said, I think I had the best birthday of my life.I had a mild moment of panic right before midnight on the 19th, when I realized 23 is pretty close to 25, and people are supposed to have their shit together by now. I'm getting there, only now there isn't really room for major mistakes. I have to get things right the first time. All day on the 20th, I felt so appreciated. I felt so loved. Not everyone gets cake on their birthday at my job. I got TWO cakes. I got to blow out a candle. I got sang to. People brought me Starbucks all day long. I got the most gorgeous new dresses, bathing suit, and shoes. Someone got me a coffee maker. A beautiful bouquet of roses was delivered to my work in the middle of the day, and my heart melted. It's the thought behind each gift that matters to me. Every one was so personalized. It's nice when people care about you, and pay attention to everything you say. It's nice when people go out of their way to make you smile. It's nice when someone puts your needs before their own. If you have someone like that in your life, hang on to them. I know I plan to.




Wednesday, June 4, 2014

Vroom Vroom

It's funny how life works. I always had a plan. I was supposed to be a veterinarian or go to grad school for neurobiology. My life was all about science and love, and I liked it that way. When it all changed, I tried to fight it. I didn't want to accept it. There wasn't anything else that piqued my interest. Old friends gave up on me too. I knew I was the problem, but I didn't care enough to change. Or rather, I didn't know how to. I was miserable and I wouldn't want to be around me either, so it was for the best that I was alone. Sometimes I would wonder why, if maybe there was something else I was supposed to do with my life, and this drastic end to all my old plans was the only way to achieve it. Then I would immediately think I was stupid, there is no higher power guiding my life, we are all alone and our choices make or break our lives. Still though... sometimes it was like the universe was laughing at me, and whispering "Just wait..."
Even, a month ago I had no idea what I was doing. I had a job that I liked and I wanted to get promoted and move to Colorado. The job was just that. A job. I met tons of people every day, but I worked alone. I got fed up when they kept making payroll errors. I looked on Craigslist and there it was. My future.
"Bilingual salespeople".
Did I ever in a million years imagine that I could sell cars? No.
Now that I'm doing it, I wonder why I didn't start sooner. It's not for everyone. The hours are ridiculous. You have to actually know about every car. You have to know how to talk to people. I love it. I've been there 3 weeks and I already made sales alone and with coworkers. It's addicting. I thrive in high stress environments.
I can actually see myself doing this as a career. It's not just a job. We all basically live there, so our teams are like families. What's even more awesome is that my motivation and skills are actually recognized. It's not like I've sold 15 cars in one month, yet, but they all see that I will. I can't wait to prove them right.
Take notes, parents. When you believe good things about a person, they will do anything to prove you right. After my mom died, I had no one left that believed all those wonderful things about me so I stopped believing them myself. I have that again. I have a whole slew of people that believe the best, so now I believe it again too.

Monday, June 2, 2014

Metaphors Taken Literally

My best friend is going through a rough time. She was finally able to get out of Arizona with her child and is creating the ideal life for herself in Colorado. Still, the way her family was reacting to her trying to better herself brings back unpleasant memories for myself. My best friend was depressed, so she went to therapy. That's healthy. She got better.
My brother and I are the only ones who went to therapy when my mom died, and I kept going when all the other shit went down in my life. Still, the stigma is terrible in that culture. Because my brother and I were the only two in the family to be proactive and seek help, we are crazy, right?  Soooo fucking crazy. Just because no one else went, it doesn't mean they wouldn't have benefited. Still though, in that particular culture, if you go to therapy or counseling for any reason (even bereavement counseling) you are crazy to them. They ostrazise you.
Incidentally, this is what also happened to my friend. Her family (also Mexican) found out she went to a couple of therapy sessions, so they ganged up on her because they think she's crazy. The fact that she sought help means she shouldn't have her child, according to her family.
Unfortunately these people (her Mexican family) are the same type of people I had to deal with as well. There is a fucked up cultural barrier there. I'm not being racist when I say this, and I wish it wasn't true, but my family in Mexico has no idea who I am, how Americans live, or why we say the things we say or believe the things we believe. They will take anything you say and attach their own meaning to it, or twist your words. You could say something as innocuous as "the pot called the kettle black", and they'll turn around and tell everyone "oh my god, she honestly believes pots can talk. She must be schizophrenic or something! "
It's a God damn figure of speech. God forbid you use any metaphors on social media or around these kinds of people. They don't have the mental capacity to understand metaphors. They take everything people say literally. Zero critical thinking skills. People at my work will say " I'm a beast!" When they sell a car. If my best friend or I said that around any of our family members,  those family members would turn around and say "SHE THINKS SHE IS A BEAST! INSTITUTIONALIZE HER ASAP!"
Seriously?
They probably can't even connect the dots between examples either. To make this easier to understand, I said "I'm a fucking princess!" to someone who I thought was a friend, and who I (wrongly) assumed would know what I meant. Imagine my surprise when  weeks later my family intervened and informed me that I thought I was (really) a princess. The fuck?  No. People abroad were so kind to me and I wasn't used to it. They were making me (and all the other girls) feel like princesses with their hospitality. I use metaphors and hyperboles quite liberally in conversation.
Anyways, sorry this turned into a mini rant. When there are very real cultural and language barriers between you and your family, shit gets really uncomfortable really quickly. I was shocked when this happened to my bestie. It also made me realize that maybe this type of behavior is way more common than I thought. It's not right, and maybe by talking about it other people won't have to feel so alone. Just remember no one knows what is best for you except yourself, and you shouldn't let others persuade you to do what they would do. Maybe they have a solution that WOULD be better for them, but they don't know what goes on inside your mind and what makes you happy. Only you do.
I love you Ann and I'm so proud of you for creating a better reality for yourself and your adorable babeh. ♡♡♡

Wednesday, May 21, 2014

My Summer Wine



"Take off your silver spurs and help me pass the time..."

So... I haven't posted in a while. I need to unload some brain vomit.
I have so many plans, hopes, dreams, and fantasies. Unfortunately, I have a tendency of making rash and impulsive decisions that end up backfiring and costing me everything, financially and emotionally. Call me crazy, but I think maybe, just this once, I am going to plan. The last time I planned, it also backfired and ruined my life, but this isn't the same. It's more of a loose plan. A rough outline, with wiggle room. I was so eager to go, go, go, get the hell out of here, but I'm ill prepared. It was a possibility with my last job, since they were promoting me and transferring me to Colorado. That was a plan! However, due to issues with payroll (the issue being, they weren't paying me!), I had to leave that job. I was pretty bummed and saw this as a huge setback. Leaving that job is starting to look like something religious people refer to as a "blessing in disguise". I see it as an opportunity to regroup, refocus, and make a solid plan. When I finally do go, I don't want it to backfire. I don't want to come crawling back, depressed and penniless. When I go, I want to have a real chance at life and achieving my dreams.
So, I took a logical step and found a new place to work. The new place happens to be the number one Nissan dealership in the state. My last job was in sales, this one is even bigger sales. The hours are insane, the office is like the car dealership equivalent of Mercy Grace hospital (Grey's Anatomy), but I'm loving it so far. I think my brain was so starved for knowledge, that it doesn't matter that it's cars I'm learning about. It's just happy to be studying something.

From there, all the pieces seem to be falling into place. I am very grateful to my dad for letting me stay here for a few months, but let's be real. I need to move out. The perfect opportunity arose, and come July I will be back in a house in Tempe with my best friends. Even better is the fact that one of these friends has cast me as the female newsanchor in a new ASU film department newscast. It's going to be news for ASU, in the style of Weekend Update from Saturday Night Live. I will obviously update my blog when there is more concrete information. I just know we start filming in August, and the garage has been converted into a studio for this project. Funding has been provided by varios organizations on campus. I am so beyond excited about this. I get to act with one of my old theater pals!

Life has also had a funny way of surprising me lately, in a good way.
For the first time in a long, long, time, I'm not just pretending to be happy or pretending to be excited. I am! I am genuinely pleased with myself, and curious about the future. My last year, I wouldn't wish on my worst enemy. Looking back, I can say with complete certainty that I can survive anything. I depended on myself. I got through it on my own. There will be dark days, everyone has them. Tomorrow is the second anniversary of my mom's death. The day, this whole month, is not easy. I don't have a time machine, though. I can't go back and fix anything. Dwelling doesn't help, clearly. The only thing I can do is keep going. People can't help you if you don't want to be helped. They especially can't help you if you don't ask, or if you don't try. I learned that I can rely on myself...but I learned that it's okay to lean on friends during the bad days. Knowing that is priceless.