It’s one in the morning on New Year’s Day. I’m alone in my room savoring the last taste of mini-chocolate donuts before my medicine kicks in. Once it does, I get so nauseous that all I can do is lay still and hope that I can sleep.
When the clock hit midnight, I was lying in bed watching a documentary about obese people on my computer.
I was alone.
The only “Happy New Year” wishes I got were two texts. One was from a wrong number. The other was from one of my friends that I’m in the process of losing touch with; I suspect it was a mass message to everyone in her phone.
My mom and sister were downstairs, but they made no effort to come see me. I’d snapped at them earlier, so they left me alone. My boyfriend didn’t say anything either. I haven’t heard from him since seven, when he said he was sorry for not coming over because he was tired and in a meh mood. I’m guessing he fell asleep.
I’ve spent most of that time crying on and off.
You see, the problem is that I’ve spent the last three days with a pain in my left side, and while it fades in and out, it’s been getting worse. Normally this wouldn’t bother me too much, but in the last three weeks I’ve been in and out of doctors’ offices. I started off with a Urinary Tract Infection (my third since May), and after being off of those antibiotics for a day, I developed an ear infection. While I had my ear infection, my allergies ran amok, and I had to get a special nose spray to allow some sinus tube to open back up. I just finished the antibiotics for the ear infection yesterday morning.
All of this would be overwhelming enough by itself, but this happened after almost an entire year when I didn’t go one week without something happening to make me stop what I’m doing and curl up on the couch and wait for it to go away.
All of this has happened because I have fibromyalgia.
I’d explain what fibromyalgia is to you, but I don’t even know myself – my doctors don’t either. They THINK it’s nerves over-reacting and sending out false pain signals. But if that were all there was, it wouldn’t be associated with so many other things. If you stop by any fibromyalgia website, you can click on a page and find a long list of associated diseases and ailments. All of them aren’t even listed.
As if the pain and stiffness weren’t enough, now I have Irritable Bowel Syndrome, chronic fatigue and insomnia, sensitivity to temperature and certain chemical smells, loss of concentration, and worse, anxiety. I hope that my reproductive organs function properly, because I want children one day (Even though I already know this might not be true. I’ve had one cyst and irregular periods so my doctor threw me on birth control a few years ago and that was that.)
So I have my pill cocktails for this thing and that thing, and I have patterns I need to follow or else something will flare up. There’s an even bigger problem with all of these things: I’m nineteen.
I was diagnosed with fibromyalgia at sixteen, and for a while it looked like it was being managed by medication. I was able to function and go to school and go out with friends. It would flare up every now again around my periods and during the winter, but it was still manageable…until January of this past year.
My doctor decided to switch me to a new drug for fibromyalgia. This drug was hardcore. It came in a trial in this little book container. I had to ease into it because it carried some potentially harsh side effects. It was hell from the beginning. I was nauseous from the second pill, but my mom and I decided to give it a chance.
By the middle of the trial, I was so nauseous and weak that it put my new part-time job into jeopardy. I sat through the orientation trying not to throw up. When I started having heart palpitations to the point where my heart stopped beating long enough for me to panic, we decided to take me off of the drug, but of course, I had to taper down because there was a chance of seizures from suddenly stopping.
Ever since, the problems haven’t stopped. I’m more than a semester behind in college because I’ve had to drop classes. This next semester, I will try for the third time to finish Composition 2 and Intro. to Sociology, and at this point, I’m not sure if I will be able to do it on this try.
I did online classes last semester, and this semester was supposed to be my attempt at real classes again. My anxiety has been right below the surface for weeks. I keep thinking, “If I can’t even make it more than a few days without something happening, how can I make it through classes? How can I live a normal life and have a job when I can barely function for more than a few days?”
I’m very aware of how much my parents spend on my doctor’s appointments and medications – it isn’t a small sum. My mom’s stack of doctor’s bills and reports is easily over six inches. I know my insurance runs out when I hit twenty-five, so I know I have a time limit to finish school and find a job, but I’m going to school to be a high-school English teacher. My starting salary will be somewhere in the mid thirty thousand dollar range.
I don’t want to have to admit that I will have to rely on someone to help take care of me, but honestly, on a teacher’s salary, I will be stuck at home until I pay off all of my student debts or I move in with a boyfriend. I refuse to live with friends because I don’t want them to have to take care of me when I get bad. I don’t want them to have to bring me things when I can’t get up. I don’t want them to have to sit with me when I’m curled up in bed sobbing because I don’t want to be sick anymore.
All I can do is hope that it will go back into remission or I can find a way to manage it because I don’t know how I can ever have a normal life with it as it is. I always have the fear that people are going to leave me because I’m such a mess. I tell my boyfriend that I’m a mess; that I’m falling apart, and he tries to reassure me that the rest of me makes up for it.
It angers me when people don’t take my illness seriously. My sister laughs at me if I tell her why I’m feeling bad. I’ve had people tell me it was all in my head or look suspiciously at me when I can’t give them an adequate explanation of fibromyalgia.
I know I don’t look sick, but I like it that way. If I looked sick every time I felt bad, I’d always look awful. I get mad when I see all this research money being thrown at all these other manageable diseases or anti-ageing products when fibromyalgia has the potential to systematically destroy people’s lives. It doesn’t matter that it’s not deadly: if a disease has a potential to confine you to bed, it deserves funding.
My plans for my future are very tentative. Even if I’m only planning a week in advance, I have to add “I think” to the end of it because I have no idea if I’ll be up to it. I’m sick of having to add “I think” to all of my plans.
I want to have a job. I want to go to school full-time. I to live on my own. I want all of the things people my age complain about. I want these things because they’re normal. I want to know that I can be normal. It hurts to hear people complain about this stuff – I want so badly to do it all.
My political views are becoming more liberal. I’m okay with universal healthcare when we can afford it. I need it. I’d gladly pay extra taxes if it means I don’t have to pay for outrageous doctor bills or ridiculously expensive mediation because I react badly to certain generics.
I support abortion because if I were to accidentally get pregnant, I’d have to choose whether to put my body through excruciating hell and lose all functionality for nine months, or abort. I’m not even fond of the idea of abortion, but I still want that option.
I recently started supporting medical marijuana because my body is being worn down by pain medications. I get upset when people try to oppose me on that one. My favorite argument is that America doesn’t need more high people because people with chronic pain are already high all the time. People in chronic pain take pain pills to function, not to relax. (Also, the people who actually would need medical marijuana hate the people who want to abuse it just as much as you do.) I’d gladly eat a pot brownie instead of taking a pain pill that’ll leave me nauseous and weak for six hours and for half a day afterward because my body is already worn down.
Do I need to repeat that I’m only nineteen?
And all I can do is just sit, wait, swallow some pills, try to exercise when my body lets me, try to eat healthy when my stomach lets me, and hope that I can get everything into a manageable state.
I’m starting to feel it’s too much to hope for it to just go away.
I’m the product of parents who didn’t know how to fulfill my emotional needs.
I alternate between believing both that “my parents gave me everything; I had a happy childhood; I don’t have any reason to be this messed up,” and “my parents emotionally neglected me; I had an awful childhood; no wonder I am this messed up.“
I fantasize about being in the hospital because that seems like the ultimate (and only) way that people might finally see me and care about me. Logically, I know that it’s not true, but my emotional brain is convinced that being sick or hurt is the way to get the love, attention, and care that is not present in my daily life.
I am ashamed.
I’m a 22-year old who is still desperately attached to my mangled childhood stuffed animal, Lambie.
I surreptitiously, but uncontrollably, pull out my own hair. I know have trichotillomania (and dermotillomania while we’re at it), but it’s one of my most shameful “secrets.”
I eat spoonsful of Nutella straight from the jar, and sometimes that will be the only thing I eat for the majority of the day.
I am depressed.
I am pained getting out of bed in the morning. It’s hard to relate to people who casually say, “Yeah, I didn’t want to get up this morning,” but may not understand the gravity of depression. It hurts to the bone.
I have trouble taking my daily antidepressants because a hidden part of me doesn’t believe I’m worthy of feeling better.
I am obsessed with filling my brain with as much information about mental illness as possible. And yet, no matter how much I read books, articles, and studies about eating disorders, depression, anxiety, or impulse-control disorders, I struggle to control my own mental health.
I have a hard time with “I’m depressed.” Maybe because I don’t believe that the real me is just buried under mental illness. It’s more like “I’m a person living with depression.” It has taken so much of my personality and soul out of me, but without depression, I am a lively, joyful girl.
I am taking care of myself (or I’m learning to).
I practically begged my parents to see a therapist, nutritionist, and psychiatrist, when I was only 15 years old. It certainly wasn’t easy, especially because we didn’t talk about anything “emotionally charged,” but I knew that it was a step I had to take in order to alleviate my pain.
I reach out to others when I need it most. Even though I isolate, too, I also know that in moments of desperation, I do instinctively ask for help and support from those I trust.
I treat myself to occasional manicures, special purchases (a dress, a pillow, some art supplies), and a lazy Sunday. As much as my brain tries to trick me into thinking that I am worthless and unlovable, I try to actively do things for myself that remind myself that I deserve care.
I am brave.
I share my story with very few people, but when I do, it is the most rewarding experience. Sharing real experiences and thoughts is how I create deep connections with people.
I moved to Denmark for my first job out of college. I don’t speak the language, I’ve never been away from home for more than four months, and I left my entire support network at home.
I am working full-force in therapy at facing the demons and insecurities I have hidden for years. I am taking charge of my life by learning to be vulnerable, accept my flaws, and love myself in spite of them, and find happiness for the first time in my life.
Most of us, well, we don’t think much about their hearts.
From A&P, I saw precisely what one looks like and was a little disappointed. It also looks like a fatty Nerf football, which doesn’t do it and it’s job any justice.
I know I’ve waxed poetic about the brain, but honestly, without the heart? There would be no brain function.
For years, I simply ignored my heart because, well, it worked. It’s a luxury most of us don’t have to think about until we’re old and wrinkly. Yeah, yeah, yeah, I mean, I KNEW about a heart healthy diet, I knew things could happen to your heart, or you could be born with a congenital heart defect(s).
The first time I became aware of my heart, I was leaving Las Vegas (no, not that depressing movie).
I’d had a migraine, because, obviously, VEGAS, so I popped a few triptans into my mouth and let them melt in my mouth. I’d not had luck with them so far, but my ancient, forgetful neurologist insisted I try them. He even gave me a garbage bag full of samples, (which is neither here nor there, excepting that if I’d tried to travel with them, I’d have been accused of drug trafficking), and urged me to try these breakthrough migraine meds.
Which leads me to the plane going home from Vegas.
I’m not a nervous flyer, I wasn’t stressed, I wasn’t upset in any way. In fact, I felt great.
Until my heart started a rockin’ beat in my chest. Started, I looked down at my chest to note that while it felt like my heart was going to burst through my chest wall and flop down onto the tray table like a fish out of water.
It took a second because it made things a bit blurry, but I realized that I was experiencing palpitations. So much for my garbage bag of triptan samples. When I returned to the neurologist, I mentioned my rockin’ heart beat and he asked, “are you sure?” (which he may have been directing at old skull on his desk) and I assured him that yes, I was entirely sure. He explained that it was a rare side effect of the triptans, but did look a little oddly at me – I think he’d finally realized who I was.
BAM!
No more triptans. It wasn’t a huge deal – they’d not really helped and shit, heart palpitations aren’t a joking matter.
At this point, I should have seen a cardiologist.
Clearly, I did not.
Years later (late 2016), I was admitted to the cardiac ICU after going to the ER to figure out why I’d been falling so often – now sober, it made no sense. They ran my labs and my calcium was super high and admitted me. They twerked around my medications a bit, and kept me hooked up to that medusa-like EKG for what seemed like days because it probably was days. Outcome? Prolonged QT-syndrome – chemically (medication) induced.
I should have seen a cardiologist, but I was homeless and broke and let myself forget about it. I mean, it stayed there in my mind, gnawing in the back of my brain stem, but still, did nothing.
I’m a terrible patient.
Last year, I’d found out that my mother had hypertrophic cardiomyopathy – which has a genetic basis, and ignored it again.
Finally, after that stupid little voice in my head reminding me in increasingly annoying levels that hey, this heart-thing is important, Dumbo, I made my appointment at a random cardiac clinic near my house. I went in, Nathan in tow, expecting nothing whatsoever to be wrong. I mean, really – I had enough issues already – and my heart, with those few minor exceptions, was fine.
I got to wear a cardiac event monitor for 30 days (somehow it ended up at 35 days) and every single day/night I wore it, I was in hell. The electrodes itched, they popped off randomly, and they’d choke me now and again. Which is why I took it off around day 20, waiting for the call from the company that monitors for abnormal rhythms, and since I never got the call, I never put it back on.
Bad, BAD patient.
During my scheduled ECG, I laid on the table, knowing they wouldn’t find anything. I mean, I didn’t even think I HAD a heart, much less problems with one.
A couple days later, I was told to get a cardiac MRI. At this point, I kinda rolled my eyes because CLEARLY THERE WAS NOTHING WRONG.
Several days after THAT was complete, I was called back into the cardiologists office, again, Nathan in tow.
“It’s fine,” I told Nathan on the 3 minute drive to the cardio practice. “It’s not a big deal.” Nathan didn’t look like it was so fine, but for all I knew, he could just have been constipated.
My cardiologist steps into the room and starts with, “we’re going to send you downtown to Northwestern,” and that I needed “a genetic screening” because I “had hypertrophic cardiomyopathy.”
“Okay,” I replied, thinking I was making a major gift for geneticists everywhere. I mean, certainly my genes were awesomely superior.
In the meantime, Dave and I worked out a plan to take the kids to a pediatric cardiologist.
The genetic test took approximately 100 years to complete (I never said that I was good at math) and had a failure rate of 60%. Thankfully, my body, like me is highly competitive, and it did work because I was soon to learn that I’d had had five genetic markers for the test (four of which the meaning was indeterminate). The one that I DID have showed that my HCM was genetic, and I had a 50% chance of passing it on to any of my babies.
My heart sank at that – you hate to leave a genetic legacy like THAT to anyone. I’d prepared myself for it, however, because what else beyond teeth-gnashing and pearl-clutching can you do?
At their appointment with the pediatric cardiologist, their hearts were examined and they showed no signs or any development of hypertrophic cardiomyopathy. They’re young, of course, and the yearly monitoring will help the doctor to catch any new developments in their hearts. Plus, I mean, it’s a combination of gene mutations that cause HCM, and with all genes considered, there may be protective genes that reduce the chance of the development of HCM, even if they are carriers.
At least, that’s what I tell myself.
My geneticist was kind enough to send out kits for the kids, and in approximately 150 years, they will find out if they’re carriers.
Until then, we’ll wait and see.
Great.
If life has taught me nothing over the last five years, it’s this: life is precious, precious gold, and if you squander it away, whelp, you’re probably not going to get a second chance. If you want to make your mark in this world, get the fuck out there and do it. Don’t be scared, fear can be a good thing – it means you still have something to live for.
“We’re all going to die. We don’t get much say over how or when, but we do get to decide how we’re gonna live. So, do it. Decide. Is this the life you want to live? Is this the person you want to love? Is this the best you can be? Can you be stronger? Kinder? More compassionate?
Decide. Breathe in.
Breathe out and decide.
Nothing is permanent you’ll never know when your time is up.
Aunt Becky challenged me to write an “I Will” post… Here’s my crack at it:
This is a year of major changes for me. The title is paraphrased from a book by one of my favorite authors, Maeve Binchy, who died a few years ago. One of the lessons I’ve taken from her books is that kindness matters and change is sometimes incremental, but the opportunities to change abound.
First the Goals:
Meet Baby (due end of June)
Complete Probation (October, possibly sooner)
Complete the 12 steps (currently on Step 4, which sucks, but I am finding valuable)
Start School (Sign Language Interpreting Program)
Graduate Treatment (possibly this month?)
Move into my own apartment (hopefully by March)
Resolutions:
Stay sober (110 days and counting)
Eat regularly
Practice healthy boundaries – especially removing unhealthy and negative people from my life and saying “no” to things that jeopardize my values/goals/self
Re-engage with Church
Practice gratitude
Learn to manage anger without becoming self-destructive
Stay Present and Enjoy the Journey
Practice Forgiveness – especially of myself
Give back
Never Stop Learning
Make good choices (especially financial ones)
Daily Maintenance (this is a concept from NA – aka The Four Simple Things: 1. pray honesty, out loud; 2. talk to another addict, preferably one sponsor or someone else with more clean time, honestly; 3. read literature daily; and 4. do something nice for someone else).
All right, I have two confessions to make before I start this post.
One) I totally pushed myself into this. I felt almost called to say something. After some clarifying on what a birth defect was via Twitter (thanks, DJ Moo :)), I felt like I had committed myself.
Two) I suck at blogging, writing, and this whole world of wordy creativity. I fully support it and have a Google Reader addiction, but I don’t have the knack for writing, so bear with me. 🙂
Allow me to introduce myself: I am 17 years old, a strong believer in God, and a Starbucks addict. I talk way too much and adore my friends more than anything else in this world. I work at a preschool, as well as babysitting for two of the sweetest girls in the world. One more thing: I’m just over 4 feet tall.
Mmm, you got that right. I have achondroplasia, the most common form of dwarfism. I was officially diagnosed at 3 months, and it is just as much a part of my life as your birthmark on your forehead or her bright blue eyes. I do everything that everyone else does, just in my own way.
What has truly shaped me within my “defect”? My parents are average height. I am the only one in my entire family with this genetic disorder blessing. I walk this road alone on a day to day basis. Does it suck sometimes? Absolutely. Would I want my life any other way? Absofreakin’lutely not.
Little People of America has been the greatest support system for me. We have conferences 3 times a year – over 200 people in my district alone, as well as nationwide with over 2,000 people – that I’ve been attending since I was 3. My true second family. But 10 days out of the whole year isn’t enough to make me feel mixed in with the rest of the world.
I think the reason I pushed myself to write this was because it’s been weighing down on me lately. I am going to college in the fall, and though I’m beyond thrilled, I’m a bit scared as to how my dwarfism will hinder my college experience. I’ve battled depression, and honestly, my physical differences and incapabilities have got to be a huge source of it.
As my mom put it, “It sucks to be a teenager, you think nobody ever understands you. But to be a teenager with dwarfism – that is truly when you know people don’t understand you. It’s got to be even more impossible.”
So… yeah. It’s hard not to be able to work in the kitchen without a stool. It’s hard to be 5 minutes late to class – while you’ve got all the sympathy in the world from your teachers – because your school is so darn big. It’s hard to be stared at. It’s hard to be shrieked at because someone is truly taken aback by your height. It’s hard to be asked “how’s the weather down there?” It’s hard to be called a midget – basically the equivalent of the n-word. It’s hard to have many close friends who “get” you to a point, but will never be able to “get” that one piece of you. It’s hard to have how much you actually can do alone be underestimated. At the same time, it’s hard to have to ask someone to grab that one pint of ice cream you can’t reach because, though you’re best at shelf-climbing, it’s too risky sometimes. 🙂
But it’s what has made me stronger. I am really outgoing, and I think my dwarfism contributes to that extremely. My average-height friends have supported me in every way they can. They honestly have told me they forget I’m short. And I love that. They have seen beyond my differences.
My uniqueness is part of me, but not the whole. It has made me who I am, and I would never, ever want to change. I have more opportunities to stand up for myself. I want to educate people about dwarfism as much as possible. It’s not a “disease” that can be cured, but there are thousands of lives that hold this genetic blip that gets over-judged by everyone.
I am me. I always have been, and I always will be. I most likely won’t be growing any more. And I’m okay with that. I have learned to accept myself. I am beyond sure that God had a supreme purpose for putting me right here, right now, just as I am. I just haven’t found that purpose yet.
Thank you for listening.
I just needed to get that out… hoping to find a support system here, because the one in my ‘real world’ is slowly coming down.
