A One-Sided Goodbye

I got the news this week that you died.

I don’t know what I want to say, really, but I’m writing. I’m going to try to say something anyway, even if it’s hidden in a slough of disjointed thoughts and raw feelings that I haven’t really sorted or dealt with just yet. So here goes.

I didn’t want to have to say goodbye to another friend. I didn’t want to have to tell another story like the one I’m probably going to tell (ramble about?) here. I like telling stories when I’m reminiscing, not when I’m trying to convince myself that reality really is as shitty as I thought. It’s been a few days since I originally wrote this, and I tried to let my thoughts settle before I made it public. But reality hasn’t gotten any less shitty. Reality is going to hit me in the face like a bag of bricks tonight, when I see you and everyone who loved you together again. Another friend is gone. A friend I used to be closer to; one who I dearly wish knew what I (and so many others) are feeling right now. Not because I want you to feel bad that we hurt, but that we hurt because we loved you, and it physically makes us feel like something has been torn from us. Everyone should know that he or she was loved and valued like that.

I feel defeated. I feel hurt. Grief. Remorse. Foolishness. All sorts of things that are better reserved for an overblown reaction to a shitty job interview than to the death of a friend. But that’s the way it is for me. Feeling guilty about having feelings: If that isn’t painfully Midwestern, I don’t know what is.

I feel defeated by time and life. Like they’re in some kind of terrible pact to wreak as much havoc as possible on people who don’t deserve the shit they’ve been handed. I feel like, despite my and their best efforts to improve ourselves and always look forward, the battle takes a turn for the worse every so often, and good people are tossed to the side as casualties faster than anyone could ever expect. Death, at this age, is rarely drawn out. And yet, I personally never seem to learn from my mistakes: I don’t make enough time to be a good friend. I know damn well how fragile life is, how valuable friendships–even friendships that could use some nurturing after some dust has gathered–are, and I blow my chances to honor these precious things over and over and over again. It seems I never have enough time for everyone and everything, no matter how honest or good my intentions are. Quality time spent with loved ones is always just around the corner–when work has calmed down; when my son is a little older, and I’m not his personal vending machine; when I have all my ducks in a row and feel like I have the time to give. Life is passing me by in some ways, and it’s not stopping for anything simply because I’m busy.

To the contrary.

Before I left Fargo for California, I had my share of problems. But, despite the fight I was putting up, I also have to remember that there were many slivers of happiness made available to me: I lived in the moment; I had friends who I saw regularly; I had the fortune to live with some great people, you included, who cared for me despite what I saw as all of my shortcomings. And despite my tendency to let my deep-seated insecurities and festering past traumas control my life by doing things like drinking too much and caring about myself too little, I was, somehow, accepted. I still count this among my blessings, even though nearly a decade has passed since this time. I can hardly believe it.

In the conversations we’d had over the years, I feel like we’ve covered just about everything. I recall conversations about gaming, music, movies, cars, and your regular ol’ generic stuff that friends do. But then I remember talking about mental illness, being poor and being rich and all the shit that came between, traveling, how to learn a language, and how to be a kind person. We also discussed whether prot warriors were the best tanks, and I never forgot the night we all decided we were going to run a heroic Slave Pens wherein you ended up running directly into a wall until you dc’d, leaving the rest of us in the middle of a dungeon we were painfully undergeared for. I remember bringing you along to Karazhan with my stoner shaman friend (I also miss you, Deeks), and you couldn’t BELIEVE that they would give you such amazing loot as the King’s Defender, even though they outgeared that place by a long shot. You kept insisting they take it because you couldn’t possibly accept such loot. We basically had to force you to take it. This is important, I promise–and it’s because I enjoyed playing WoW with you back in the day, and even when you were playing a game, you were considerate of others. It seems like that’s an oxymoron these days, what with everyone being a shitbag on the internet. You were good peeps, though. (Not to say you didn’t have your trolly moments, however. Because you did.)

We talked about dumb people and smart people and why life was the way it was. You used to message me about things that you knew affected me: the rights of the LGBTQ community, the struggle for affordable healthcare, taking care of a sick loved one. That you told me about the devastating diagnosis of someone close to you meant a lot to me–that you’d trust me and value my friendship enough to reach out and share something so personal. I only wish I could have done more aside from offer you words of support when you did reach out. I didn’t know how to help. I never want to bother or impose. Am I a coward? I haven’t figured that out yet.

To get back on track: We had a weird sort of friendship back then, one where we were sort of “unofficial” roommates and drinking buddies. I slept on the couch and acted like a general loaf. But we all hung out, and I’ve never forgotten the kindness my friends showed me when I was at one of the lowest points of my life. You and so many others were there for me when I felt very alone. It was difficult to see then how much people wanted to help and how much they cared. Depression told me it was pity, and I pretty much acted accordingly.

I have mentioned this several times, but I think this is one of the most touching things that you did: When I gave you my cheap bracelets back in like… 2007 or something, you wore them for years until they basically broke or fell off. I remember you telling me that you’d had them for so long, and I was thinking, “Why?” But you were a sentimental person. My mom always called you “pug guy” and asked how you were because she loved how much you treasured your Izzy. My sister remembers you because you talked to her about things that weren’t so well accepted in Fargo at the time. See? You made an impression on people who barely knew you. That’s something.

From the time I trudged out in thigh-high snow during a blizzard to sit with you in your car because you’d gotten stuck (and I THINK we were listening to MSI, though I can’t be sure; coincidentally, this was the day I decided I needed to move far away from Fargo) to us practicing Chewbacca noises much to the chagrin of Jeff, who had to work early (sorry, Jeff) to dancing to Britney Spears, and to all the times the entire group of friends spent together bullshitting and playing games, I have made some great memories. And who can forget my great nickname for you: McSexypants? Everyone. Everyone forgot McSexypants, except for me and you, probably. Because it was stupid. But I don’t let shit go. I think these jokes are funny forever (like Chris’s iconic “you have no face”).

I made it a point to try to stay caught up when I moved, but I failed to do a good job at it. I got too involved in another crappy point in my life, hitting a pretty low place before beginning my recovery, and in so doing, I made an ass of myself and set myself apart from a group of people who had always been kind to me. I’ve tried to apologize, but I’m told repeatedly that it isn’t necessary. It never sat right with me, though. I was so happy that you came to my second wedding, and when I told you so, you basically looked at me like I’d just said the most ridiculous thing: “Of course I’d come. Why wouldn’t I come?” Truthfully, you hadn’t come out much at all, and I felt happy that you made it to such an important event of mine.

I also feel really bad that I don’t have many photos of us. I was gone for so long that I missed a lot of things, a lot of great times. Anything I had on my old phone that got stolen is forever gone. I can’t get on my old harddrive, and I know I have some good ones on there. But photos are photos. My absence means time that I won’t get back. I am sorry for that.

Finally, our last conversation. After someone started attacking your character on Facebook, I stuck up for you. You messaged me to thank me, and it got rolling from there. You talked a lot about your health and your demons. I am not going to go into that. I just want to say that I listened, and I worried. I admit that I contacted your brother. I was scared. And when you asked me how the baby was and told me over and over that you hoped we were safe and healthy, I tried my best to reassure you that we were. When you told me about the other things you were dealing with, I wished I could help more. But one can’t fix everything, and that’s something I need to accept.

I don’t mean to make this more about me than you. But it’s all I can say because I am angry with myself. I never got to say goodbye. I wish, more than anything right now, that I could run across the room and tell you how happy I was that you came over to hang out. I wish I could hug you and share stories again. But I won’t get that chance, so I am writing this. It helps me to write, sometimes. It’s hard as hell to pull these feelings out and put them into words. But it’s necessary because I don’t want to forget. It’s at times like this when I wish I believed in God; that I thought maybe, one day, we’d see each other again. But my beliefs are my own, and they say otherwise. I want to remember you as you were, friend, kind and flawed, and do my best to part with you in a way that I feel is appropriate for your impact in my life.

So this is my one-sided goodbye. Goodbye to a friend, goodbye to a soul who was loved by so many. We will miss you dearly.

My Life with Bipolar Disorder and Depression

When the phone rang that night, I was asleep. It was probably 1 am or so, and my 10-year-old body wasn’t used to being pulled from slumber at such an unreasonable hour. I closed my eyes and willed myself to slip into unconsciousness again. The voice in the back of my head told me I shouldn’t sleep; that I should get up and find my sister and whichever parent had kept watch with us that night, and listen to what they had to tell me. But I couldn’t. I couldn’t do it because I didn’t want to hear what they were going to say. If I went back to sleep, it’d be a dream; a terrible, awful, nightmare. The phone call would be a figment of my imagination.

I woke up again, when it was light outside, to my mother’s sobbing tearing through the walls. Sharp sobs. Unearthly wails. I can’t describe the grief and the overwhelming anger and helplessness that I could hear in her voice. She was in the bathroom with the door shut, but nothing was hidden from me and my seven-year-old sister. We sat up in our hideaway couch bed and I saw my father sitting at the little table across the room from me, with tears in his eyes, but his demeanor calm.

I knew the words that were coming next. The phone call hadn’t been a dream, and my willful ignorance had been pointless. I started crying. My sister got scared and started crying, too, not really understanding what was going on.

“Sara went to be with your sister last night.”

Angry sobs. Uncontrollable tears. Cursing God. Hadn’t I prayed hard enough? Losing Kristin was hell on my parents… and now Sara’s gone, too?

It was three weeks before her fourth birthday.

head-is-bad

Image from STYLEGERMS

 

My dance teacher threw up her hands, exasperated.

“Why don’t you even try?” she asked. I was half her height and couldn’t look her in the eyes. We stood in front of a wall-sized mirror, where she scrutinized my form as I practiced a section of my dance routine in a trance-like state.

“I am,” I said. We stared at one another for a moment, our eyes locking in the glass, and then she turned and went to assist one of my classmates. I wanted to leap through the glass like Alice, and escape from the inanity of memorizing a simplistic, boring dance routine. What did it matter, anyway? The only people who cared were my parents. They were the only ones who showed up to watch their kids prance around on a stage like clumsy little mannequins, wearing far too much makeup for their own good and hair sprayed into place like a tiny Texas beauty queen. Who else cared? I couldn’t think of a single person.

But my mom paid for classes. And I had to keep everyone happy.

I forced myself to move again. If you squinted, it looked sort of like dancing.

“We need to talk,” my piano teacher said, looking at me while I let my fingers slump from the keys and into my lap, knowing what was coming. “You haven’t been practicing, and you seem very… sad.”

I refused to make eye contact and just stared at the keys, tears welling up in my eyes as I tried to choke out some kind of answer. Words weren’t coming.

“Is it because of your sister?”

Yes, it is because I have a gaping hole in my life where her little bald head should be. Her adorable, round eyes and her singing and dancing and hilarious jokes. She should have been free of her illness, and don’t you think I am angry that such a sweet little person had to suffer so greatly? I hear her voice when I try to sleep, and my chest hurts so bad that I feel my heart will tear itself apart.

I have her drawings of our family together. It will never be the same. I have a mother who won’t stop crying, a father who gets the brunt of her uncontrollable wrath. A younger sister who is clearly struggling to process death and is doing worse than I am. I pretend I can’t hear the arguing and get angry with myself for being such a failure at everything instead.

“Yes, I’m sorry.”

She understood. She said I had to keep trying. I was trying. I was. Why did everyone think I wasn’t trying? I was reaching for something in the distance, but I never seemed to get any closer. Reaching was all I could do.

 

Or pursuing a writing career. Onion, you are spot on.

Or pursuing a writing career. Onion, you are spot on.

Image from TheOnion.com

“Girls, come in here,” my dad called. My sister and I were in the family room, and he and my mom had been fighting in the bedroom for what seemed like hours. I knew what was coming. We stepped into the room and they looked at us with somber, controlled expressions. I crossed my arms.

“Your mom and I love you two very much…” my dad choked out, then trailed off.

“You’re getting divorced, aren’t you?” I asked. He shook his head.

“We’re just going to try being separated for a while. I’m going to get an apartment and you can come stay with me every other weekend.”

I was so mad I was just numb. When the “conversation” was over, I left, and felt like crying, but it was the anger that was growing more than anything else. I hated my life more and more with each passing day. I didn’t know what normal was anymore.

...

“I think this sounds like you,” my friend said, pointing to the phrase BIPOLAR DISORDER on our worksheet. “You’re like, happy some days, and so sad the next that no one knows what to do around you.” I stared at it, then looked at her. Learning about psychology had apparently made our class into a bunch of 12-year-old mental health professionals. Still, something about all the symptoms made sense. I lagged behind my friends now that we’d started middle school. Boys terrified me. Doing anything physical in front of anyone terrified me. Going to church on Sundays terrified me. I hated everyone and everything, and had thought repeatedly about dying that week to escape from the misery of hormones, schoolwork, depressing home life, and practicing activities that brought me no joy whatsoever.

“Yeah, maybe,” I said, and went back to doodling on my notebook. The more I thought about it, the more I became convinced that maybe there was a name for how I felt. I walked up to the teacher after class and I told her I thought I had it. She looked at me strangely and said, “You should talk to someone about this.”

So I told my mom.

She said I didn’t have it, and demanded I go apologize to the teacher and clarify before they started to think I’m crazy.

I looked at the bottle of painkillers and wondered. If I ate them all, would it stop? I thought of my sister and of my parents. Well, maybe I’d just take a few and see if it helped me be in a dreamworld or something. I took 10 and fell asleep.

I woke up the next morning as usual. I was disappointed.

It continued throughout high school. I could never focus. I hated most things and most places. And most people. I watched my close friends get picked on and plotted revenge against those who would hurt the few I did care for. I was just a girl, though, and the bullies were guys and totally unthreatened by my stature. Go figure. But some people thought I might be crazy, and many definitely found me strange, and that scared them. I began to channel severe rage episodes into art and writing, finding new ways of killing off characters who were quite thinly-veiled representations of the awful bullies in my life. But it was all written off as being a hormonal teenage girl.

On one occasion, I confronted a bully and threatened him, wanting so badly to tear him to shreds mentally and physically for picking on a harmless, shy friend of mine whose only crime was to draw too many anime girls on her notebooks. His mother was friends with my mother, but I didn’t care. I made him feel like the tiny, insecure little prick that he was, and I felt good about my meanness for once. But it was a short-lived victory. I still cried at night, not just because I was sad, but because I was angry. Because I didn’t want to deal with any of it any longer.

When I went home at night, my mom would keep her hawk eyes on me. I could never go anywhere unless she’d planned it about a week in advance. I understood her fears. I enabled them. I told her everything to keep her calm and as happy as she could be. She was petrified of losing another child; how could I be so selfish to be away? Especially when my younger sister, who was on the verge of a very serious transition in her life, was being picked on at school for being eccentric? It was my job to hold it all together. My burden I placed on my own damn shoulders.

 

 

Fucking love Emilie Autumn

 

I didn’t start cutting until I was about twenty. I was slow to arrive at the rodeo, I guess. My boyfriend had been watching so much porn on my computer that it was all buggy and gross, and I was livid about it. I told him how much it hurt me that he wouldn’t touch me, but he wanted the faceless girls on the internet; he apologized to me and he promised he’d stop. He never did. Not once in our nine-year relationship (in which we eventually got married) did he ever tell me the truth about his intentions. He just kept doing it and telling me he wasn’t. I got so good at catching him that I reveled in the fact that I was smarter than he was. But I felt so worthless and ugly after knowing what he did that I would cut myself out of anger. Punishing myself for being… me. For being not good enough. Because how fuckable he found me was apparently the only self-worth I could see inside of myself. I didn’t realize how unhealthy these thoughts were until our marriage fell apart.

He told me he’d been in love with one of my best friends for years when we’d been married for a year and a half–I was 27 at the time, living in a state far away from any of my friends or family. He wouldn’t stop drinking until he was an obnoxious asshole who sneered at people and blamed me for everything wrong in his life. He’d watch porn ON THE TOILET IN THE MORNING and completely ignore me while day drinking at his job that I GOT HIM. I’d started detaching myself from the relationship already, which was not the nicest thing I’ve ever done in my life, but I was mentally and physically exhausted. When he told my poor friend of his true feelings (while smashed, of course), she was floored and didn’t know how to respond. This girl was one of the friends who was picked on in high school–we’d known one another for 13 years–one of the girls I’d wanted to protect.

For months after this, I switched back and forth from uncontrollable anger to severe depression. Body wracked with pain, mind completely blank, heart utterly shattered kind of depression. I went to therapy immediately, but did not see major improvements until I went to a psychiatrist and asked him to please help me by putting me on medication. I was diagnosed with bipolar disorder and chronic clinical depression. I also have body dysmorphic disorder and extreme anxiety when it comes to certain pornographic materials (just about on par with PTSD, but I don’t like saying that because I feel my case doesn’t merit the title. I was sexually assaulted and emotionally abused, but so many people go through so much more than I have and I feel PTSD isn’t the proper term for me–I’ve seen my soldier friends with it and I just can’t bring myself to use that terminology.)

depression_motivational_poster_by_quantuminnovator-d6dwgk8Image by QuantumInnovator on DeviantArt.

 

I’m turning 30 this week. Mental illness has nearly destroyed my life. I once contemplated killing myself when I turned 30 if my life was as miserable as it had been for so long. But before you get all panicky, I’m happy to say that while I’m sad about this milestone and being “behind” my goals, I’m here to stay, and I’m recovering more and more each year.

These stories don’t include the struggles my one surviving sister has; those which my mother has dealt with; my father’s huge emotional and spiritual journey; the impact of an attempted rape (I just can’t write about it in this context) and an (unrelated) unplanned pregnancy; nor does it cover the impact that a building autoimmune disease and undiagnosed genetic syndrome have had on my life. But what I want to say is this:

If you have ever wondered whether mental illness was one of the following:

  • A phase everyone goes through
  • Something someone just needs to “pull themselves out of”
  • Hysterics
  • Something you need to just “get over” or “snap out of”
  • Attention-seeking or selfishness
  • Stupid or unwarranted, given the person’s status
  • Not justified in your eyes (i.e., someone rich or someone very attractive suffers from depression and you think it’s just them being stupid)
  • Something you should be able to get over without the use of pharmaceuticals or therapy
  • Something only for damaged people who are likely to be a threat to themselves or others
  • Something you can discriminate against because those who have it are “crazy”

You’re a moron. Okay, scratch that–you might be naive, but you’ve also got no handle on the reality of mental illness. Someone in your life may be afflicted with an invisible, awful, alienating disease such as clinical depression. As in, right now. When you pretend these things aren’t serious, or when you push away someone who is suffering, you’re doing them a disservice. You may not be a therapist, but you can be the one to reach out your hand and tell them they’re not alone. That you won’t judge them or shun them for asking for help. Many sufferers just need to know that someone cares.

Oh, and never fucking tell a mentally ill person that if they ate a better diet or took some herbal bullshit supplements that they’d cure themselves. That’s not how it works.

 

robin williams headshot

Robin Williams passed away today from apparent suicide at age 63.

 

Visit this site if you’ve had thoughts of ending your life. Cliche, but here it is.

http://www.suicidepreventionlifeline.org/

I wrote this today after reading the discussions surrounding the death and apparent suicide of Robin Williams. Mental illness doesn’t discriminate and it’s a fucking tragedy that it took the life of someone who has touched so many hearts with his successful career. My story is just one of many stories that could and should be told. I wanted to share just bits and pieces of my struggle so that people could see that it’s very real. It’s very dangerous. And I’m here today because of the support of friends and family, and because of medication and therapy.

If you need help, I’m here to tell you you’re not alone. Fight this shit. Fight it as hard as you can. And change the discussion surrounding mental illness. We need to remove the stigma and push for more affordable, accessible care.

If you like, you can watch a tribute video I made for my sisters below, and you can read the story I wrote about Sara’s death here.

 

 

You can also read my writing here under my pen name Deina Furth.

Art continues to help me and heal me in ways I can’t anticipate. I appreciate your support. ❤

hang-in-there

A Battle Not Easily Won: Part 4

house it's not lupus

OR IS IT, DR. HOUSE? IS IT??

Part 4: I go to mayo clinic and see a crapton of doctors. I have a lot of tests done. But i get answers and now I’m going to share those with you! hurrayyyy!

Off to Rochester!

Fed up, I made an appointment with the world-renowned Mayo Clinic in Rochester, Minnesota. I now lived 5 hours away from it, and my sisters were treated there. I hadn’t been there since the youngest died. It was scary, actually, to consider going back to where she had her transplant. But I made the appointment and prepared.

Going to Mayo Clinic is like… going to a Godly hospital. The doctors there give a shit about you. They take their time. They listen. They run appropriate tests. It’s also like going to a convention, but instead of panels, it’s going to tests and appointments. I met with a doctor who scheduled me to see a rheumatologist, an endocrinologist, and a gastroenterologist. They were still concerned that I possibly had Celiac but no positive antibodies. And they, like the other rheumatologist, were more concerned about my bones than anything else, but I didn’t really care. I was going to see ALL THE DOCTORS!

What the tests said:

  • Yep, you got some tissue destruction going on. Your ANA w/ reflex is still positive.
  • Wow, your creatinine (associated with kidney function, aka lupus fun times) has steadily gone up and is on the verge of being too high. But it’s not, so our systems aren’t going to flag it.
  • Your vitamin D is okay–should be a bit higher, but that’s okay! It’s normal now.
  • Your kidneys aren’t pushing out TOO much calcium. So we don’t know why you’re
  • Your thyroid is a bit slow, but as it’s been tested 2 other times and was normal, we’re going to ignore that.
  • Your bone density is still crap.
  • You have minor scoliosis in your neck, upper back, and lower back. Also, you have arthritis in your lower back. Your lungs and heart look pretty good.
  • Your joints are not swollen. They are enlarged somewhat, but not full of fluid, so it’s probably not RA.
  • Your fingers look a-ok under a microscope. You do not have enough criteria to diagnose scleroderma at this time, but there’s some crap going on that we must monitor. You could develop it in the future.
  • Your endoscopy (boy was that a fun time–I hallucinated that a lady had two heads) says your stomach and intestines are fine. You do not have Celiac disease.

And then I got the diagnosis that I simply had IBS. Okay, well that’s fine. I kinda knew that.

But here’s where it gets good.

When I was talking to the rheumatologist, he had me hold my arms out completely straight. He tapped my elbows and went,

“Huh, looks like you have a bit of Ehler’s-Danlos Syndrome.”

Wat. Is that.

It’s a genetic connective tissue disorder where your joints, connective tissue, and blood vessels are hypermobile. Now, there are a lot of different manifestations of this disorder. But it ranges in severity from “this is a pain in the ass–literally” to “your blood vessels could literally burst and kill you at any point in your life.”

COOL. ANOTHER THING.

So he did more hypermobility tests and pinched my skin.

“You have VERY soft and elastic skin. This is a very prominent symptom of EDS.”

So that other idiot rheumy who commented on it didn’t even associate it with the disorder? God, he was a waste of money.

So I made an appointment with a genetic counselor to talk more about it. That guy totally did not think I had it at first.

But the more we talked the more he said, wow, you really have a lot of minor symptoms. I’ve had joint dislocations, My vision frequently blacks out when standing up (postural orthostatic tachycardia syndrome–where your blood doesn’t flow right and your heart races when standing up.. fun acronym, too: POTS) One of the most unexplained and bizarre symptoms is the scoliosis and… drum roll…

OSTEOPOROSIS DING DING DING

So all in all, I have EDS and it caused my osteopenia/osteoporosis. IBS is a part of it. Endometriosis is extremely common with it. Cracking joints and pain is another big part of it.

My other diagnosis was undifferentiated connective tissue disease. I was put on prednisone to help with the pain. This could be the early stages of Lupus, Sjogren’s, or Scleroderma. I must be monitored forevs. I also need to have an echocardiogram to see if I have a mitral valve prolapse, which is common among EDS patients. I have some symptoms of the vascular type of EDS (easy bruising, prolonged bleeding, easy scarring) but since no one in the family has up and died randomly from an aneurysm, it’s unlikely that I have it.

For more information on EDS, go here: Ehler’s-Danlos Network

But I have answers. I have a genetic disorder and a disease that affect the same damn thing (connective tissue) but I have answers.

A Battle Not Easily Won: Part 3

osteoporosis progression

Yes, and that something is a goddamn enigma wrapped in a mystery.

Part 3: doctors run tests and discover that lol, i actually have something else wrong with me: an autoimmune disease. But it still doesn’t explain my shitty-ass bones.

 

Tests Are Fun. Just Kidding.

Doctors were baffled at my DEXA scan results. They ran a lot of tests to find out if I might be secretly ill, because it’s just not normal for someone my age to have such “old” bones. I went through thyroid and parathyroid tests, but nothing was wrong. My kidneys and liver were tested, but nothing was found there, either. (It was a test where I had to pee into a jug for 24 hours. That was fun to deliver to the lab.) Blood tests showed I had a vitamin D deficiency. Since calcium can’t really be absorbed without adequate vitamin D, the docs figured that was it. I begged for a Celiac panel to rule that out. It came back negative. My back was killing me and I was exhausted at the end of every workday. I couldn’t concentrate on anything. I went to a mental health specialist to find out if I had ADD. Nothing ever explained what was going on with me. I tried to work out and do yoga and walk, but every time I did yoga my joints snapped so much my boyfriend asked if I was breaking myself. On top of that, my periods had gotten even worse and my headaches were appearing regularly. I couldn’t even go into work when I had my period. Thank GOD my manager understood. She has been so kind to me throughout everything. I still work for her and appreciate all she’s done for me.

Anyway, I was desperate, so I got an IUD to try to quell some of the horrific depression, cramps, and bleeding. I’ve had more issues with the IUD than I should have–SURPRISE, cramps and 21-day spotting cycles–but I’m not bleeding so much I can’t go anywhere. Except for one time. That was scary. But overall, it was an improvement, I suppose.

I lost my health insurance when I switched jobs in August 2013. My sister left to pursue her PhD and my boyfriend and I made the decision to move to where my family lives to save money and talk to more doctors. We were sad, in a way, but I couldn’t tolerate what was happening anymore. I needed to talk to someone who knew more about bones. Once we got back, I went in to talk to a general practitioner and she ran some blood tests.

Surprise! Something Else is Wrong.

I wasn’t expecting to find anything different than the tests in California had shown. But something came back strange. ANA with Reflex was the name, and when I looked it up, I was floored. Associated with autoimmune diseases such as Lupus, Sjogren’s Syndrome, Systemic Sclerosis, and Polymyositis, this test wasn’t anything to ignore. My doctor ordered more tests and I watched as the results flooded in. Weird tests for double-stranded DNA, and antibody after antibody that I had to Google to understand. All of these results were coming in on a night when I was headed to a friend’s house. I had been wearing a hat and wanted to fix my hair once I got there. When I went to the bathroom to fix it, I noticed a small bald spot on the top of my head, just under the size of a dime. I panicked. I knew it was a symptom of many autoimmune diseases–hell, autoimmune alopecia (alopecia areata) is a disease unto itself. I felt feverish and got tired well before I normally did. I felt like I was falling apart. Thus began the exhausting 6 weeks of December through mid-January.

Then the bone thing just faded into the background.

The test results finally came back in a few days later. My doctor emailed me saying that my antibodies for CREST syndrome (also called scleroderma or systemic sclerosis) came back positive. So my results were, in her words, “indicative of systemic sclerosis.” I googled it. If you do not know what scleroderma/systemic sclerosis is, it is a horrifying debilitating, progressive, and sometimes fatal disease that robs you of your self-confidence and independence. I am sorry if anyone reading this has it. There are ways to fight it, there are ways to get support and maintain your confidence and independence, but let’s not kid ourselves–this disease is real, raw, and goddammit, why does it even exist.

I cried. A lot. Like, nervous breakdown sobbing. I am an artist, a writer, and I enjoyed yoga and simple things–you know, like brushing my teeth and fixing my hair–without worrying about my hands balling into inflexible claws. I didn’t want my face to become so tight that I couldn’t smile like I used to. I didn’t want to get gastric reflux so bad that I had to elevate my bed or risk barfing all the time. I didn’t want to get pulmonary hypertension. Or have my fingers’ circulation get cut off so badly that I got ulcers or–God forbid–had to have them amputated because of gangrene. THIS DISEASE IS HORRIBLE, IN OTHER WORDS.

What the fuck was wrong with me? Why was this happening to me? Haven’t I gone through enough in my life? Illness has haunted me like a fucking poltergeist since childhood. Two of my sisters died from a genetic disease. My grandmother has Parkinson’s and I am watching her slowly become so disabled she can no longer care for herself. My relatives on both sides of the family suffered from “rheumatism” or what’s now known as RA/rheumatoid arthritis, which is in the same family as lupus, scleroderma, polymyositis, and Sjogren’s. 

I set up an appointment with a rheumatologist. I wrote down all my symptoms. I did research. I spent hours documenting things and culling through my memories of pain and bizarre symptoms. I realized I had much more in common with Lupus and Sjogren’s than scleroderma, but it’s possible my disease was caught in its infancy. I saw that endometriosis is very common in people with autoimmune disease. Nothing about bones, though. So I focused on the immediate problem and brought a huge file to my doctor.

Well, let’s just say he sucked and didn’t really care why I was there. He pinched my skin and said “no, you don’t have scleroderma.” Then he wrinkled his nose and was like, “Actually your skin is very soft, like REALLY soft, and quite flexible.” (This, I would find out later, is a really important symptom, and he as a rheumatologist should have seen something here. He of course, did not.) I was floored at how I was treated. He was more concerned with my bones than anything else, and ordered a bunch of tests (which I’d already had done) for me. He even insinuated that my pain was in my head and then gave me the diagnosis of fibromyalgia. 

I believe fibro is real. I do. But I do not have it. It is a bullshit diagnosis for someone with clear connective tissue disease and pain associated with it. He did an xray to check for pulmonary hypertension and interstitial lung disease (associated with scleroderma) and sent me on my way after offering me painkillers, which I refused.

Part 4 continues!

A Battle Not Easily Won: Part 2

fight endometriosis

Sure you can. By having surgery after surgery to laser scar tissue and blood-filled cysts from your organs, or going on drugs to induce a lovely, rage-filled menopause–the drug is also known to compromise bone density. FIGHT ON, SISTERS

Part 2: I have the insides of an 80 year old, and there’s nothing I can do about it because there’s supposedly “nothing” wrong with me.

Fuck Relationships and Endometriosis, Too.

Things didn’t get better fast. I bled uncontrollably. I could hardly function at work. I’d wake up with horrible headaches, and later be reduced to tears because of cramps and the fear of being unable to go anywhere without bleeding all over. It was debilitating. And in a job where I worked primarily with men, it wasn’t something I could really talk about much. I could talk to a few women, one of whom had looked out for me from the very beginning like a mother, but I knew she had her doubts about how well I was doing. I wanted to be okay. But I felt very isolated and, well, lonely. Even though I’d gotten married only about a year and a half earlier, I could see things unraveling. It began to put me into a very real, very deep depression. Between the pain, my crumbling relationship, and my growing anxiety and depression, I felt ready to quit my job. But I pushed through it because I wanted to save up money.

My husband started working out again and I decided to go with him, in the morning before we had to be at work. My hips and lower back began to feel better with working out, and felt better for a few hours during the day, but locked up at night and in the morning. He showed me some stretches, which I did regularly. He had to rub my back to force my muscles to relax so I could sleep. I got a sharp, nearly constant pain under my right rib, which I Googled and immediately regretted. I ignored it (great pattern, right?). I began to sleep less, waking up frequently, and eventually I fell into a cycle of 3 hours a night. My husband drank all the time. I knew he had feelings for my best friend. I couldn’t get him to admit to anything or change anything.

And then I fell apart.

In the end, I wasn’t a good wife any more than he was a good husband. He asked me, after I broke down, if we could ever make it work. I looked him in the eye and said, “No.”  Driving him to the airport was difficult. I felt like a failure. I felt like no one would ever believe me or think I was a good person ever again.

Journey Uphill

I started going to counseling. Living alone, I wanted to adopt a cat to keep me company, and I started talking to my friends online and tried to remain positive. It was difficult. No, actually, that’s being modest–it was nearly impossible. After about four months, I adopted a cat and got a roommate, one who I am with to this day–my boyfriend, Steven. He was supportive of me, but I pushed him to the limits of his patience. I was still climbing uphill, and I wasn’t moving very quickly. I began working on creative projects and focusing more intensively on my strengths, building a portfolio for my writing and learning how to do animation and video production. This proved to be a good investment of my time, as it helped me land my first writing job. I wanted to go to the doctor and see why I always felt so tired and in pain, and I was really stoked on the fact that this job offered good benefits, despite its shitty pay. We struggled with bills, and my sister moved in with us to help while she applied for PhD programs. It was helpful to have her around to talk to. After four months of hounding my boss and HR, and filling out paperwork 3 times because of ineptitude, I finally got health benefits.

It was only about two months later that I heard a radio advertisement for a medical study. This study called for endometriosis patients to test a new pain medication, and it paid a decent amount of money. Being poor and still suffering with bad cramps, I thought this would be perfect for me. So I enrolled.

A part of the test included a bone density scan, called a DEXA scan, to ensure you didn’t have osteopenia or osteoporosis. I asked if that was for the post-menopause participants, and the director said yes, and not to worry about it. The pill could compromise bone density, so it was just a screening measure that wouldn’t affect me.

Except it did. I found out the scan showed osteopenia and osteoporosis in different areas in my hips and spine. I was floored–growing up, my mom forced us to get our 3 glasses of milk a day. We ate so much dairy that it was impossible to have something like this, right? My mind drifted back to being vegan, to not taking care of myself during my stressful job. Did I do this to myself somehow? And thus began the doctor’s appointments to find out…

A Battle Not Easily Won: Part 1

This is going to be posted in 4 parts because honestly, it’s not going to hold anyone’s interest that long. lol. This is part 1.

autoimmune disease

And depression, that’s in there too.

Part I: Exciting Backstory 

IIt started when I was twenty years old. Or at least, the pain did. Everything else just seemed to pile on in the midst of life drama and worsen in an abusive workplace, and it would be passed off as stress and anxiety and depression for years before nearly destroying my ability to get through the day without needing to pop some pain killers. But I’m getting ahead of myself.

When I was twenty years old, I woke up one morning and my knee hurt. I thought I must have pulled it while working or that I’d been too lazy and needed to start working out more. I never thought to see a doctor about it. It didn’t seem serious enough. Over the summer, I began jogging on a daily basis and I started lifting weights. I was sore a lot, as one would expect, but I felt more energetic and happier with my body overall, and even though my knee still hurt, I just ignored it because the pain wasn’t that bad, and it came and went whether I worked out or took a few days off to rest.

When winter rolled around, I started getting a tightness in my chest that I couldn’t really explain. It was difficult to breathe. I’ve had issues with pleurisy my whole life (if you’re not familiar with it, it’s where your pleura, or the lining of your lungs, inflame and rub against one another, making it feel like someone is stabbing you with a knife every time you try to breathe), but this was different. It was like someone had reached into my chest, grabbed a hold of my sternum, and squeezed as hard as possible–and never let go. After a while, I began to become concerned that something was wrong. I was winded when I shouldn’t have been. I worked out on a nearly daily basis. It wasn’t normal, and I finally decided to go in to a walk-in clinic and see if I had an infection.

When I went to the doctor, they made me blow into this tube that measured the force of the air exiting your lungs. Mine was not great. They just shrugged and said I had “cold- and exercise-induced asthma”, gave me an inhaler, and sent me on my merry way. It did help a bit, but it seemed like eventually, the pain just went away on its own. I never went back for a refill.

Fuck Uteri and Fuck Ovaries

I’d always suffered with really bad periods, too. I’m talking full-on depression, horrible back pain, cramps, bleeding heavily, and getting fevers and breakouts. I kept dealing with it all by just taking ibuprofen, and trying birth control pill after birth control pill until I finally found something that didn’t make me want to throw people out of windows. Or myself, for that matter.

Then I went to grad school and the migraines started. I don’t think it helped that I was in a bad relationship and probably drank more than I should have. I felt so small and insignificant. Something changed inside of me that year. I started getting worse lower back pain than I’d had in the past, and my headaches got worse, but I chalked it up to stress and my quickly downward-spiraling quality of life.

When the economy crashed and I wasn’t able to get a job, I figured my issues were caused by depression and anxiety. Pain was a normal part of my day, but I was sleeping on a friend’s couch, so I ignored it. After a nasty breakup, I moved to California. And that’s when it all started to get worse.

And Then I Joined the Circus.

Not really. But the job I started required 70+ hours a week for weeks on end, heavy lifting, and dealing with sexual harassment regularly, along with healthy doses of drama. I didn’t mind, to be honest. I made a lot of money and could support myself on my own. I had an idea that I could accomplish everything I wanted to, if I just tried hard enough, and my positive attitude did help me fit in after a bumpy start. Then, only two months later, in the summer of 2009, after another messy personal situation, several bad–no, traumatizing–things happened to me in a very short period of time. I won’t go into detail here. But suffice it to say, it broke me mentally. I went back to things I’d relied upon in the past. I thought it’d be different, given the gravity of the situation. It wasn’t.

It was about this time that my periods got pretty much out of control. One day, while leaning up against a wall on a long and physically difficult set up day for work, my left leg buckled and I felt pain shoot down my back like I’d never felt before. I sort of played it off like I was just sliding down to have a seat; it worked, because no one noticed. After that, it started happening regularly. My hips started to hurt. I dreaded my menstrual cycle more than I ever had. After a year of this, in August 2010 shortly after my wedding, a stabbing pain in my right side lingered for over a month and started traveling down my leg. I finally went in to see a doctor. But I didn’t mention the joint pain–I assumed it was the difficult work I did. I found out I had a cyst. The doctor just told me it was normal, but that I had the option to try to quell my body with a new birth control pill designed to help with migraines and endometriosis (at this time, it was just a hunch that the doctor had–I hadn’t been diagnosed.)

I cried for 18 hours straight two months later. Unable to stop myself, unable to stop thinking of horrible ways to end the crippling depression and the pain (which was still there, constantly), I went of the pill and told my doctor I wanted surgery to find out if I had endometriosis once and for all. I agreed to have a surgery in March of 2011.

Well, of course I did. I took down that story, but someday I might put it up again. It’s graphic and at the time I was contributing to some other professional site, and I realized people who are into advertising might not want to read about my crappy uterus.

Part 2 up next.