Dead: Chronically Misunderstood

I can remember this moment as if it were yesterday.

I walked into fifth period with a haze over me from the pain meds I had taken that morning. I felt horrible but I had missed this class everyday for weeks and knew I needed to go in order to attempt to catch up. There were three people I recognized in that English class and the rest were complete strangers.

When I walked in there was a boy siting in my seat, naturally I though they had changed seats so I asked a girl who sat by my presumably “old seat” if the teacher had changed the seating chart. “Ugh no,”  she scoffed at me, “we’ve been in the same seats from the beginning of the year.” I didn’t have the energy nor the will to scoff back or come up with a witty comment. “I used to sit there, where’s your old seat? I’ll move,” I ask the boy.

Before he can respond the girl juts in, “Oh your that girl” she says as she rolls her eyes. The boy got up and I sat down exhausted and slightly annoyed at her unnecessary attitude. As I unpacked my things the other students began to talk about me as if I wasn’t there. “I thought she moved” one kid said, “I didn’t think she was ever coming back another chimed in. Then as if the whole world went into slow motion the same rude girl spits out, “well I thought she died.”

I thought she died.

The conversation continues with the other students saying “Oh no I didn’t think she died, but I’m surprised she’s back.” I sat in disbelief. These people who don’t even know my name are having a whole conversation about me while I sit right in front of them. I’m just “that girl” to them.

Looking back I wish I was coherent enough to have snapped back, “thanks for coming to my funeral. You seem really upset by my death.” Honestly the lack of social awareness is what makes this semi-funny. I have to admit a part of me is still a little annoyed that they behaved that way and couldn’t care less about the status of my life. Teenagers can be so insensitive. Of course they didn’t know this but at the time I wasn’t sure if I was going to die or not, soon I mean; we’re all going to die. I had no diagnosis (but that hasn’t changed) and I was in such severe pain everyday that something was obviously really wrong.

Now it’s almost comical, but in the moment it was just one more thing to deal with. Moral of the story think before you speak, oh and also just don’t be a jerk.

Lots of Love,

If a dead girl can even love 🙂

Alyssa

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When The Happiness Breaks Through

When the happiness breaks through

And the weight of heartache is lifted from my shoulders

My spirit begins to flutter

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I lay down my burdens

And for the first time in too long I’ve let you take them

This sensation is distantly familiar

Oh my does it feel good

You’ve been waiting here all along

but I just come to visit

and I know that should change

I’m tired of making myself feel unwelcome

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My spirit awoke, as cliché as that sounds

My soul feels light

And my inner most being has been lifted

For too long I’ve been trapped

Stuck under neath the weight of it all

And I shut down

Shut you out

The rain poured and I tried to make myself comfortable in these wet clothes

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But you’re my umbrella

In that one shade of yellow that I’ve always felt was too happy

Maybe that’s it

I’m afraid of being happy

Because happy means things could go wrong

Happy means I could crash

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But I already crashed

and never really got up

I only fell further and further into a hole of despair

Reaching for a hand I was not ready to take

Occasionally I’d crawl out only to fall back in

From the unbalanced weight of the boulder on my back

The boulder I let sit there, grasping tightly as you pulled, signaling for me to let go

All my life i’ve been told I’m too stubborn

But I don’t want to be stubborn with you

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This isn’t the first time I’ve been here

I want to say it’s different now

My breaking point was long ago

Yet I’ve continued to shatter

I don’t know how much further I can break

Before the pieces are too hard to put back together

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I hide under a mask of cynicism and small talk

This used to be a character I’d play

But we morphed into one on a dark day long ago

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Part of me always feels silly when we get here

Why hadn’t I done this sooner?

I know the truth but I let the pain over take me

I’ve been running on sarcasm and anger for far too long

Contemplating things that aren’t what I want, aren’t who I am

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Now I rejoice

Praise you till my throat dries and my tears run empty

For the first time in a long time happiness is appealing

Loving and being loved is desired, no needed

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I want to say this will last forever

I want to believe I’ll continue to show up

I’m tired of being a guest within my own soul

There’s some cobwebs to clear sure, I won’t pretend like there isn’t

But when you break through

I want to delight in your name

The Illusion of Health

From commercials to diet magazines and even health class in high school we’re taught that if you eat right and exercise you’ll be healthy.

But what happens when that isn’t true?

The illusion of health is the illusion of control. Living in a world where anything can happen in the blink of an eye is scary and not something most people want to think about. When you’re the one who’s chronically ill though, you don’t get that luxury.

I was twelve when my chronic illnesses started. I spent every evening after school outside and rode my bike all over my neighborhood with my friends everyday. I was active and ate pretty well for a twelve year old. Sick is not synonymous with unhealthy. It’s easy for able-bodied people to point fingers and tell us we’re not doing enough when in reality we’re working harder than them to keep our bodies alive.

I think a lot of ableism stems from fear. Who wants to be reminded that they could one day be the ill one? Instead of seeing us as people we’re seen as some sort of pathetic life lesson or worse inspiration porn. That’s when the “what ifs” come into play. “What if you went gluten-free? What if you tried yoga? Have you seen a specialist? Maybe you should lose/gain weight.” While it’s incredibly insulting, I think all these “suggestions” come from the same fear but with added narcism. People like to believe that if they were the sick one, they could do something about it. They could “heal” themselves because they would try harder. We’re just not trying hard enough, we just don’t want it enough.

A man at my church who was an avid body builder dropped dead a few months ago. He had a heart attack in the gym. “But he was so healthy,” everyone said. Being physically fit does not mean you are exempt from health problems. Tragically he wasn’t “healthy” on the inside and never knew.

Sure diet and exercise can help prevent some health issues that are specifically related to obesity, but at the same time a lot of those issues have a genetic component or are a symptom of a pre-existing condition. Take Type 2 Diabetes for example; The stereotype is that someone with Type 2 Diabetes is over weight and consumes way too many carbs. While this may be true for some people, for others it’s genetic or a symptom of another health issue like PCOS. The same goes for high blood pressure. The stigma around these conditions is so large that we often shame the person for having these conditions instead of helping them.

Giving your body everything it needs in order to be healthy is important, but it doesn’t mean you automatically get a clean bill of health. Diet culture gives us a false sense of control. Humans are not indestructible and doctors don’t have all the answers. It’s not a fun topic but the idea that you have complete control over your body and your health is quite frankly ignorant.

But ignorance is bliss, right?

 

 

Day of Silence 2017

April 21,  2017 is the Day of Silence hosted by GLSEN.

The Day of Silence is a day when participants take a vow of silence to bring light how homophobia and transphobia, as well as harassment and bullying in schools silences LGBTQIA+ students.

9 out of 10 LGBTQIA+ students have dealt with some level of harassment/bullying because of their sexuality/gender. The Day of Silence is in place to try and combat that problem and put rules in place to take action against the bullying and harassment. Many schools do not have anti-discrimination rules in place to protect their LGBTQIA+ students and so students who participate in this day are encouraged to challenge their schools to change that.

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While I have never personally faced direct discrimination or bullying due to my sexuality so many students have to deal with this on a daily basis. LGBT youth are 4x more likely to attempt suicide, and the rate of drug abuse is an estimated 20-30% higher for the LGBT population. A huge contributor to that is homophobia, transphobia, and harassment/bullying.

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Show your support for the LGBTQIA+ community today by taking a vow of silence!

Sometimes silence speaks volumes,

Alyssa

Happy Easter!

Happy Easter Everyone!

Whether you celebrate Easter as a religious holiday or as a cultural holiday I hope you have a fantastic day and spend with someone you love.

Easter to me is a reminder of the greatest miracle of all, Jesus dying on the cross for our sins and then rising again three days later. Easter symbolizes new life, marking the beginning of Spring. Okay well technically Spring begun almost a month ago, but it definitely doesn’t feel like it here in Texas.

One of my favorite things about Easter is seeing all the little kids dressed in their pastel clothes on Easter Sunday. When I was little my mom would buy me and my siblings new Easter clothes and it always felt really special. We would take photos in the bluebonnets and gripe as she said, “Just one more.”

If you don’t celebrate Easter, but celebrate Passover I hope you’re having a great day as well and enjoy your festivities. And if you aren’t celebrating anything this Sunday I hope you take advantage of  stores being less busy and go do something fun!

Happy Easter,

He is risen!

Alyssa

The Guilt of Chronic Illness

We shouldn’t feel guilt of things that are out of our control, but I don’t know anyone who’s dealt with a chronic illness that doesn’t ever feel guilty.

I mostly feel guilty that my parents spend so much time taking me to doctor, especially my mom, and that they have spent so much money on medical treatments. They never try to purposefully make me feel bad, but I know this is hard for them too. They didn’t ask for this anymore than I did.

For almost all of my doctors appointments my mom’s been there. It’s not that my Dad doesn’t care, his work just isn’t nearly as flexible. She’s spent countless hours in doctor’s offices, ER’s, and hospital rooms. She’s advocated endlessly for me, even when she was tired or not feeling well herself. I am so grateful for her, but I also feel terrible that she’s sacrificed so much for me.

The money is a different issue. We’ve always been very fortunate to be middle class. During the five years I’ve been chronically ill my dad was laid off and then unemployed for a little over a year. Luckily he got a pretty good severance deal from his previous employer but it was still really hard on our family financially and emotionally. My illness did not stop just because he lost his job, and paying tens of thousands of dollars in medical bills took a blow to our finances. While we’ve also been very fortunate to have always had medial insurance, the cost of doctors office visits, medications,  and diagnostic testing really adds up. Knowing that even if I have a job that pays really well in the future, I will never be able to repay them is a hard pill to swallow. I see that every time they check the mail there’s another medical bill that’s usually for me, and it makes me feel incredibly guilty.

Another thing that makes me feel guilty is seeing my parents get upset when I’m not feeling well. Sometimes I try lying and say I’m feeling okay, but they can usually see right through me; I’m not a very good liar. At times I forget that this is really hard for them emotionally as well. They are nearly as frustrated as me that I don’t have a diagnosis or an accurate treatment plan. Their heart breaks along with mine when we hear another doctor tell us they don’t know what’s going on or another medication doesn’t work. I wish I could take all of their pain away, and knowing I can’t is the  hardest part.

I know that feeling guilty won’t fix the situation or make it any better, but seeing your issues affecting someone else is difficult. I hope that if you feel guilty about being chronically ill that you can see that it isn’t your fault. Chronic illness is a beast that no one causes.

– Alyssa

 

Self-Advocating with Chronic Illness

Now I have to admit, this hasn’t always been my strong suit.

I would try to build the courage to speak up and stand firm against doctors when they questioned my symptoms or wanted to start a treatment plan I didn’t agree with but when the time came to self-advocate I found it rather difficult.

I’m definitely more comfortable disagreeing or refuting doctors now than I was at the beginning of my journey, then again I’ve had five years to practice. Doctors are people too, even though society puts them on a pedestal they don’t always get it right. As a patient there are times where it’s your job to say no and put your foot down. It’s so easy to blindly follow a Doctors orders, but that can end poorly quick. Doing your research and getting to know your own body is crucial when chronically ill.

Self-advocating is probably one of the most important things a chronically ill patient has to do. Sometimes you have to push and push to get the adequate medical care you deserve. Other times you’re fighting with the insurance company to try and get them to cover a medication that you desperately need. It’s never ending and exhausting, but so so necessary. Unfortunately with some chronic illnesses many Doctors may not be aware of all the treatment options available or even aware of what the illness entails at all. While it’s always best to see a doctor who’s treated someone with your specific illness before, that isn’t always an option. In those cases you have to be able to self-advocate and teach the health care professionals about what you need.

I have a lot of symptoms that are “weird” or don’t match the other things I deal with. I’ve also dealt with some side effects of medication that are rather uncommon, and instead of listening Doctors and other health care professionals can make excuses or just straight up not believe you. One problem a lot of people with chronic pain run into when visiting the ER is the staff not believing you’re at a certain pain level because you’re not crying or don’t “look like you’re in that much pain.” I personally don’t respond to pain by crying, and unless you know me really well you probably can’t tell by my face how I’m feeling. There is no wrong reaction to pain, but sometimes certain reactions make it more difficult to receive the care you need.

When you’re in the ER or admitted to the hospital it’s always best to have someone there who can help advocate for you. There may be times where you’re too incapacitated to self-advocate and it’s important to have a friend or family member who knows your situation and can help relay information to the doctors and nurses. I know when I’m in extreme pain, brain fog sets in and it makes it a lot harder to explain things and recall everything that’s happened leading up to the ER visit, hospital admission, doctor’s appointment etc. Other times I just don’t have the energy to explain everything or go back and forth with the doctors and nurses.

A big part of self-advocating for your health comes down to confidence. Confidence speaking to strangers and authority figures, confidence talking about your body and uncomfortable things that may come with that, and confidence being honest about how you’re really feeling instead of giving everyone the rose-colored glasses version. For me (and I think most people) confidence will always be a journey. Some days I feel ready to tackle the world and I don’t care what anyone else thinks, and other days I feel insecure. Self-advocating for my health has helped me gain confidence when speaking to authority figures and talking about uncomfortable subjects.

Do you find self-advocating difficult? How do you self-advocate? Let me know!

Lots of Love,

Alyssa