Life In The Bubble

MCAS Hangover

For those of you who have the terrible Mast Cell Disease the hangover may be something you are familiar with. Lucky for those of who have Mast Cell Disease we feel hungover when we wake up in the morning. The hangover feeling isn’t from partying all night, or from drinking, it is from our histamine bucket reminding us we pushed our bodies to far. Sometimes trying to source out what the cause is of the hangover is a challenging task. One in which we tend to come up empty handed.

MCAS, mastocytosis, idiopathic anaphylaxis are diseases which cause harm to the body and mind. When you wake up with a migraine where you feel like your brain is dried out. The pain I have in my brain this morning makes it challenging to type but if I leave things unsaid while experiencing it, I may not be able to articulate it when it isn’t happening.

Mast cell hangovers happen, our histamine bucket is to full and it is a way of our bodies telling us we ate something, drank something we shouldn’t have. It is vital when in this state to hydrate, be gentle with ones self and resort to a safe food list. These are things that have worked for me and if they happen to work for you that is wonderful. I simply am sharing my experience and what has been beneficial for me in hopes it helps others.

My intentions with this blog have always been to spread hope and put out information of things that have worked for me. I understand and I know each of us are so different and react to things differently than others with the same Mast Cell disease. This is why information share in vital, but also should be taken as a grain of salt. My safe foods harm others, and visa versa other peoples safe foods will harm me. I do not use scented products, but others may use scents that are ok for them to use. We all differ, our journeys with the disease may have some similarity with the symptoms but the cause of the symptoms may be different things entirely. An example would be kiwi’s I haven’t been able to eat them in over fifteen years, but some people with MCAS or Mastocytosis can eat them and experience no reactions.

It is pertinent to our own experience to be gentle with ourselves. While allergic reactions are scary, life treating and disrupt our daily lives, we do need to remember we are fighting an invisible devil, a white blood cell that thinks it is protecting us. While we may want to eat that dark chocolate and indulge is it worth that little devil attacking us for a day, or a week?

Being patient with ourselves and giving ourselves time to understand what we are facing is a matter of self-care and self-respect. I have learned to say “No” to people all the time now and it is liberating. I can not and will not put myself in harms way for anyone now, this is because of the Mast Cell hangover, because it can last for up to six days for me. I say no to scented products because I no longer want a chronic sinus infection. I cut scented products out to protect myself from harm. Should everyone with Mast Cell Disease do the same? I do not have a definitive answer for that, but I encourage everyone to find out what their triggers are in order to have the best quality of life.

Thank you for being here for another blog post, I hope to do my best and post once a week, with this unpredictable disease and disease I may not be able to do. I will do the best I can to write when I can. I feel as though my writers block has lifted for now (knock on wood) and will do my best to be here and on my YouTube channel. Until next time, keep your chin up, you are doing the best you can.

Disjointed With Ehlers-Danlos Syndrome

Another day another dislocated knee. I sat on the floor looking upwards into the hole where the needle needed to be placed in the machine. The sewing machine needles keep breaking not sure if this is because of a tension issue or something else. Needless to say it needed to be replaced. I got down on the floor look at the broken needles and remove them to insert the new ones. Once the new needles were secure I stood up from the floor to go make myself another coffee, as I did so I barreled into the chair and ripped my knee cap off from where it once sat. “Oh, fuck, fucking shit!” I screamed in agony. The knee cap on the side of my leg needed to be reset. It looked to me like an egg sliding off of a plate for the juxtaposition it had become. “This is going to suck!” I gently push my eggy knee back to the place it should sit and bend my like with veracity. The knee clicks and with that the sharp pain of relocation has taken place.

Ehlers-Danlos Syndrome (EDS) is a bitch. I honestly hate this genetic illness. If there was cure I am sure all of us would slather it onto our bodies or ingest it. Reality is the hard pill to swallow causing the pain in the joints and random body pains that burn and tare us from within. Dislocations are something I experience regularly. When they first began to happen I was confused why it felt like I was breaking bones, or why my insides were ripping from doing nothing. I am grateful being able to name the villain within my body, however, it does at times remind me how fragile my mortal shell is. The insides do not match the outside, this is a curse of EDS.

EDS makes me look healthy, young, vibrant, all the while feeling like a decrepit elderly person inside. EDS is pain, pain in which others may not understand. Subluxations are a daily part of my life I rarely talk about. A subluxation is a partial joint dislocation, this is where the joint (in those who have EDS) forces itself out half way, this happens to my Fibula, it will sit half in and half out and you can see the head of the bone protruding through the skin. It hurts to walk, and due to a physical therapist who wiggled this joint out of place fully, I know have pain and subluxation of this join everyday.

Something I have seen within EDS community is the amount of brace use that is a normative in daily life. As someone who did brace daily for a year, I can tell you this caused the frequency of the dislocations to increase substantially. Why is this? When we put a plastic or metal brace on our joints regularly we become reliant on the brace, thus our muscles begin to atrophy. Atrophy means our muscles deteriorate and become weak. Bracing short term is ok, but long term causes issues, this is something a doctor told me long ago and since then I have tried to brace less. I know it can feel safe in the braced space, but as someone who had my femur, and parts of my pelvis dislocate I want to improve my inner bracing within my musculature.

Doctors encouraged me to walk, not sit all the time, to do things around my place and ride my exercise bike a little bit each day. While exercise may sound boring, the benefits are strengthening the muscles around our joints to intern try to make them our internal bracing and ideally dislocate less. While this isn’t a cure-all or a guarantee, as someone who has much hope for improvement I will never quit on trying to do what I can to increase my bodies abilities.

With a fresh knee dislocation I can not do my biking and must rest my knee. As someone who has seen countless specialists this is where my information comes from, it comes from the doctors I have seen, and the research I have done on my own. Please note, I am not a doctor, but I am a patient living with this painful illness, and I want to share what has worked for me.

Thank you for taking the time to read my blog, I appreciate you and your time. Remember to try to do one thing you love everyday, because self-love will help you in many ways.

If you haven’t done so, please check out my YouTube channel where I talk about various health issues and post update about my documentary which will be out in 2024. I hope to bring hope to others and to encourage them to live life which being sick.
https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A

Disabled Words Used As Descriptors Is Ableist

Where does this feeling of inadequacy come from? Why do we need to try to prove ourselves and our worth to others? These two questions are things I have struggled with greatly as of late.

I find myself wondering why is that no one in my family reads my writing. Do they not care, or do I genuinely lack talent in writing? I am not the most prolific writer, but I write with an open heart and mind. I hope those closest to me take an interest in my work. But they do not. Are they too caught up in their world, or is it because they view me as inadequate?

Disabled is a word to birth forth a ableist tone. I keep hearing from people it isn’t the right time to talk about ableism; there is too much going on in the world. There will never be a right time if we keep not talking about it and sweeping disabled lives under the rug. Something that has continued to happen through the decades because of this collective perspective of ableism ingrained into society. The idea of looking down on people with disabilities is nothing new, but because some of the disabled are unable to articulate works to speak out does not mean the abuse and ableist discrimination aren’t happening to them.

Ableist language is all throughout society people using “triggered” to express their emotions when not living with triggers is the appropriation of CPTSD/PTSD. Calling someone bipolar, psycho, or schizophrenic because of their actions appropriates mental illness and is ableist. This need to label people for expression is regressive, not progressive, and isolates people living with mental health conditions. Why do people within society and media still feel the need to use these as descriptive words?

When will films include disabled people with actual conditions? When will films be written by disabled people from our perspective? Why is it that disabled appropriate actions are ok? It is not ok; disabled stories should be told from a disabled perspective because we view illness and disabilities from a less ableist lens, and we see them for what they are. I am sick of seeing a disabled life represented in games, comics, literature, films, and any form of media as a negative existence. I tired of films about disabled and chronically ill lives told from the perspective of the able-bodied, they reek of lies. Written in a way that shows lives of illness and disabled as suffering alone, which is dehumanizing and ableist.

I am calling you out, society; you are ableist. Check yourself and update your perspective. I am disabled, I have a chronic illness, I live with mental health issues, and I am still able to write this blog; I am making a documentary, and I will not quit or be quiet to make an ableist comfortable. I will make you uncomfortable because only in that discomfort can change happen. I am not here for your comfort, I am here to remind society that there are many wrongs that still need to be made right.

Thanks For Bursting My Bubble

What is it like to escape your home? To truly be able to leave your home without a care in the world. To be outside and breathe air not causing you to gasp for breath? I wonder what it is like to be free, to be out and about and doing things with people.

Bitter now, the bite of life, sinking treacherous teeth into the skin of my bubble bursting it and forcing me back to the reality within this prison. Thoughts of a life once lived dwindling in the kindling of the fires of past flames. No one reaching in while I reach out into the void, vastness of coding, lost I deteriorate in this digital space.

Alone, what is it to be alone. Be by ones self for years, with glimpses of a normal life lingering in the splashes of color which dissipates in the distain drenching my soul, sorrow, in my vapid, campy life. A bubble of protection bursts as the selfish continue to squander the gifts they take for granted.

The ineffectual nature built on lies and promises lacking validity. What is it like to have the privilege of leaving your window open and breathing in the air and having no fear of dying lingering, nor having the threat of life a concern as you open the window to breath in your privileged fresh air.

My bubble was burst years ago, the amount of disrespect I have encountered from others leaves me to linger in a space of messy grime, where I wonder if anyone will ever truly understand me. Will anyone ever do what is needed for my safety to spend time with me? I am tired of the lies, promises broken, and people not bothering to be empathetic or put themselves in someone else’s shoes. While I am bless with people online, I truly wonder what it is like to spend time with someone in the same space on a regular basis.

I am forgotten. I am left to my own devices. Slowly losing hope that people in real life care to be there. I may have to have surgeries soon, and I know no one will be there for them. I will have no visitors in the hospital, no one to visit me while I recover. Slowly, losing faith in humanities goodness. The unsweetened side of life’s devils masquerading as friends, family or spouses, I wish the devilish behavior’s of others was not apparent to me, I wish I could go back to naïve bliss.

The bubble which bursts when we are chronically ill is the bubble of life as we knew it prior to illness. Life changes when we get sick, people change including us. I had to do what is best for me and avoiding people who could not follow my protocols to keep me safe. My life means more to me then someone wearing perfume, or using laundry soap that causes me to swell. A period of remission is what I hope for. To be able to experience things like I did in 2019, the year I was in remission and my symptom load was less and life was pleasureful.

Am I indignant? I am vexed by the world, its complexities and the annoyances of the social normative. I am overly analytical of everything, constantly analyzing situational information to draw conclusions. While my bubble burst years ago, I want to burst the bubble of those with health privilege, it is vital to put ourselves in others situations to help and not hinder. While I am bias living in a bubble, sheltered from the harms of outside world, I feel less and less that people try to see things from my perspective.

People around me truly do not understand the complexity of MCAS, EDS, HyperPOTS. It is hard to explain, exhausting to try, and I burn out. This bursts my bubble again that people are not willing nor wanting to absorb the information I offer.

In the bondage of these diseases I fade into the mist.

Immunocompromised = Loneliness

What is being immunocompromised like? In a time where there are many viruses outside my home it makes me fear leaving the house. Not only because of the symptoms caused by MCAS but also because of the symptoms caused by having a weakened immune system. There are real dangers lurking outside my safety bubble.

There is an anger which seeps into my mind while facing the world alone from inside my home. Anger of the frustration of not having been seen over the course of the pandemic, voices from the outside world trying to convince me how Covid19 is over. When in actuality it is still a real threat to people like me. The furiousness of feeling as though I do not matter in the main stream because I am unseen, or unheard because voices like mine are rarely amplified. When on the news they would say the people dying of Covid19 were like me. It created a disconnected between myself and those health privilege around me. Not because I do not want to be connected but because my feelings, my life experience is being neglected and ignored.

People have told me they caught Covid19 and it wasn’t so bad for them, well, if they aren’t immunocompromised perhaps it wouldn’t be so bad. Although I have heard how healthy people have even succumbed to Covid19 so there are two sides to this preverbal coin. There are other things being reported in the news, but the numbers are still there. Vast amounts of germs, bacteria and viruses linger in the air outside of my door. The flu is out there, as is the respiratory virus which is aiding in a health care crisis.

Legitimate fears being ignored by those we hold dear, hurts. I find myself at odds with some people in my life because of their view on the situation or their stand point on it. I do not expect everyone to isolate to protect themselves, but some people do need to realize people like me may not have the same privileges they do. It has been years for me since I left my home without a mask, years since I had a friend visit.

Isolation brings loneliness and that loneliness drives one into the darkness of depression. I have sat with uncomfortable thoughts about my life and how the pandemic and being immunocompromised has affected my life. But I am still trying to live, I am chasing my dreams, I am making art, I escape the pain in my body and mind through creative endeavors. All the while, I am lonely, I miss human connection and interaction. I may want visitors, but is it safe? Will someone truly be able to keep me safe from a potential cold or flu they maybe carrying? I sit here, I wait in this bubble of hope and disparity waiting for the day I will feel welcomed into the fold of society.

Writing Has Been A Challenge

Lately I have been stuck trying to write but something is getting in the way. Is it the brain fog, is it the exhaustion I am facing making a documentary? I feel a little stunted and I am not sure why. I have struggled to find words to write down for the purpose of short story writing with my twitch community and I am keep coming up empty handed. Writers block is a terribly frustrating mind set to be in.

During this time of not being able to come up with the words for shorts, or my documentary I have found myself in a place where I am actively listening more to others. I have discovered I want to work on rewiring my brain and perhaps through some brain training I will find my grove by also discover the possibilities within this project.

Perhaps there is this deterrent from writing because of the way I am feeling, I am writing this right now, but it is more about writing about not being able to write for the purpose of the documentary. This process of making my first documentary is teaching me how the writing process for it is vastly different then writing a short film script. When I sit down to write a script I plot out the whole story on what is called a beat sheet (a general outline of the film). I did a beat sheet for my documentary but I am finding that the story is changing. The initial points I wanted to discuss have reseeded into the distance and there are new stories emerging, this change means I must allow the film to take shape in the way it is meant to.

Documentaries change, we may have a plan but the film and its message may shift depending on what is filmed. Perhaps my writers block is because of my resistance to this process. I must allow myself to go with the flow of the film, allow it to carry me to the points I want to show and share that with the audience.

Nothing is built in a day especially in film. Film is a media that takes a long time because of the multiple shots and cuts. The amount of A roll and B roll that need to go and where they need to go, the organization of the media after it is shot. Not shooting shots in order is also affecting my brains organization, but as a gardener (a term in film for someone who doesn’t write in order) it does help me to pick out scenes I want in the film.

There is still much to learn and I aim to do my best for the this documentary and hope to continue to work in film as I am enjoying the process. While there are struggles with it, I wouldn’t change this opportunity for the world. I am grateful and blessed to be in this position and I do hope to bring awareness and hope to others. Life with illness is a chance to live life, there are things to learn and explore and illness can refine us if we let it.

Thank you for being here, I haven’t posted in a while I get lost in working on many projects and find I have much on the go. I will do my best to write when I can.

If you haven’t done so please come on over to youtube and check out my videos on there.

https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A

Abandonment; Caretakers Burnout

Boris Levenzon sent me a question this last week: “I wonder if you care to talk about dealing with abandonment, friends, spouses, etc. I guess it touches on caretakers burnout as well. And how you said that anger and resentment are toxic, but how do you deal with not hating or resting the ones that left you in your life?”

Boris, this is a great question, and I appreciate you sending me this to give you a written response. This may sound crass and harsh, but I treat these people as people who have died. Resenting the dead is hurtful, so I just let them go and view them as if they are non existent anymore. In a way, the friendship or relationship has died. Through death, we can find closure; while the person may still be living, they may never contact us again and may never recognize their wrongdoing. Forgiving, letting go, and not concerning myself with anything that involves them anymore. I unfollow them on social media and block them if needed.

Yes, people have hurt me; many people use their anger towards me because of their caretaker’s burnout as an excuse to abuse and hurt me, and it is toxic; it destroys relationships. People who go into caretakers burn out and do not get the appropriate help will, in turn, bring a relationship to a close through their own toxic stubbornness.

People who do this lose out on the unique strength, care, and understanding we have to offer. Illness has a refining effect. It helps us to change our perspective on life and brings us to a place of learning where we see the isolation of disease and how we can be there for ourselves. It increases our capacity for coping.

If people do not want to stay in our lives, there is nothing we can do to make them. Interactions are based on free will, and if someone no longer wants to interact with us, they will not. There is nothing we can do or say to change how people feel about things. Humans are cruel, mean, and selfish, and through illness, I found that people do not want to help shoulder the burden of what someone is carrying, but many times, they want me to support them in their hardships because I am strong. If people can not be there for me, I will not offer my support; support is a two-way street. I am tired of one-way streets where I care, I am there for them, and when I am down and need someone, I am blown off. Why hold onto a one-sided relationship at all? Why hold onto people who treat you like convenience? I have met some genuinely caring individuals who are also chronically ill because they understand the hurt and isolation that come along with it.

I wanted closure myself; I wanted to be able to hear why they treated me poorly. People in my life are still treating me poorly, projecting their anger on me, and continuing to hurt me. Lying to me, they will get the help they need and truly not doing what they promised they would do. I will never get the answers I seek. People are too absorbed in themselves and their pain and too busy to see through their shit to help someone else or be there for someone else; it comes down to people being unequipped in coping. People do not admit their faults and weaknesses and thus project their toxicity onto others. They are blaming a chronically ill person because they are too egotistical to admit their wrongdoing.

I am at a point in my life where I do not put myself in a situation to be there for someone if they are not capable of being there for me. I am not wasting my precious energy on trial arguments and others’ inability to control their anger. It takes an unkind and hateful person to project their anger onto someone who has been isolated. Blaming the sick person when the fault of the abusive person is seeded in their ego. Their stubbornness and their inability to want to change or heal.

In every relationship, there must be a give and take. There has to be an understanding, and there has to be respect; a mutually beneficial thing happens in relationships when one person comes to the other person expressing hurt; the other person takes accountability for it and works to change. People who apologize and continue the same behavior are abusive and do not want to change. If there is no give and take, the relationship becomes one-sided and fruitless.

People fall into caretaker burnout because they stop caring for themselves; they stop giving a shit about the things they love and want to do. Through doing this, they resent the chronically ill person blaming them for what is happening instead of being an adult, taking responsibility for their choices, and putting their lives on hold. Lack of balance in anything causes distress. People who are burnt-out caretakers focus on trying to care for someone but do not care for themselves; if you can not take care of yourself, you can not take care of someone else, and you will become abusive.

A problem in today’s world is people want other people to fix their problems or accommodate their toxic behavior. If people do not want to heal themselves and want others to fix them, this creates a vacuum where people expect others to clean up their messes. We aren’t children; we are adults who clean up after themselves. The same thing goes for our emotional state and the way we behave. Throwing temper tantrums and being unkind to people to get your way is childish behavior. Please pick up your britches like a big person and do what you must to learn to cope with life like the rest of us. Your mental state is your responsibility, no matter who you are, and learning to be a better human should be what we all strive for. Lifting each other up and encouraging each other is far kinder than trying to squish the life out of one another.

I have had a lot of time to myself and a lot of time to think and reflect and deconstruct my thoughts. I guess that is why I have been able to take things I believe and contextualize them into something like writing. Isolation has been a blessing for me to be able to write. While it has been a while, I do my best to write when I can. There is much we can share with the world on how to cope and live life, for example, if we are given the opportunity. Our insight is different from the health privileged for a reason.

I Am Calling YOU Out; Ableist Society

Where does this feeling of inadequacy come from? Why do we need to try to prove ourselves and our worth to others? These two questions are things I have struggled with greatly as of late.

I find myself wondering why is that no one in my family reads my writing. Do they not care, or do I genuinely lack talent in writing? I am not the most prolific writer, but I write with an open heart and mind. I hope those closest to me take an interest in my work. But they do not. Are they too caught up in their world, or is it because they view me as inadequate?

Disabled is a word that strikes hearts to make them birth forth an ableist tone. I keep hearing from people it isn’t the right time to talk about ableism; there is too much going on in the world. There will never be a right time if we keep not talking about it and sweeping disabled lives under the rug. Something that has continued to happen through the decades because of this collective perspective of ableism ingrained into society. The idea of looking down on people with disabilities is nothing new, but because some of the disabled are unable to articulate works to speak out does not mean the abuse and ableist discrimination aren’t happening to them.

Ableist language is all throughout society people using “triggered” to express their emotions when not living with triggers is the appropriation of CPTSD/PTSD. Calling someone bipolar, psycho, or schizophrenic because of their actions appropriates mental illness and ableist. This need to label people for expression is regressive, not progressive, and isolates people living with mental health conditions.

When will films include disabled people with actual conditions? When will films be written by disabled people from our perspective? Why is it that disabled appropriate actions are, ok? It is not ok; disabled stories should be told from a disabled perspective because we view illness and disabilities from a less ableist lens, and we see them for what they are. I am sick of seeing a disabled life represented in games, comics, literature, films, and any form of media as a negative existence.

I am calling you out, society; you are ableist. Check yourself and update your perspective. I am disabled, I have a chronic illness, I live with mental health issues, and I am still able to write this blog; I am making a documentary, and I will not quit or be quiet to make an ableist comfortable. I will make you uncomfortable because only in that discomfort can change happen.

Living In the Bubble; Cosplay and Streaming

Villainari cosplaying everyday of October today we are on day 12 out of 31 days.

When I wrote in my journal when I was younger, I would note the song I was listening to. Did anyone else do that? In journals, I would write down the music I was listening to, so if I looked back on that moment in time by reading it, I would know how I was feeling by listening to it.

I miss those posts or feel like I’m writing in a journal. When you think about it, blogs are like a journal for others to read. Now whether the people in my life that are close to me read my writing is a whole other story. I know a few do, and I appreciate you taking the time to read what I write, being introverted makes it easier for me to write things down than say them out loud. Which sometimes makes me feel like not good at my writing which creates that little whisper of doubt. But I don’t want to let that stop me from doing something I enjoy. So I will keep doing this blog and try to upload it when I can.

I have talked a bit about living while being stuck inside most of the time. And cosplaying was something I used to enjoy when I was able to be out more. I got depressed and stopped cosplaying; I stopped streaming and making content. I want to do more to help myself to get to a better state of mind; cosplaying and live streaming enabled me to do that.

Cosplaying isn’t about escaping who I am; it’s emulating characters that evoke emotion and terrify people; they make people happy, bring them joy, and laugh. Having that capacity within myself to make myself a living art piece of someone else’s creation feels cool. I may not be able to go to conventions and hang out in big crowds, but I can Cosplay from home.

While many can mill about the outside world, the growing fear of things outside my home lingers within me. Fear of what waits outside drives me into anxious thoughts, and the fear of leaving home maskless is something I can not fathom for myself now.

I decided to do a cosplay every day for Horror Month/Halloween month this year. I am streaming every day on Twitch this month and am so excited for the release of Scorn, a horror FPS inspired by an artist I love, H.R. Giger; the game comes out on the 14th, and I am streaming it on Twitch.

I may be bubbled and have not had a friend visit me inside my bubble for almost three years, but I am doing what I can with what I have. I have a community that supports me and is there for me. They do not judge me for being sick; I appreciate them because they are like family to me. I will continue to cosplay and continue to play games to keep myself connected to others. The internet is truly a blessing.

My name on Twitch and youtube is VillainAri; this is because many times, people who are disabled or chronically ill are villainized in media. For example, if we look at the cinema, it is usually someone with some disability that is the murderous killer in horror. Even in the superhero genre, we see characters who are missing something in the realms of abled-bodied people that becomes jealous and thus turns into a villain. As an advocate and activist against ableism, I have also been villainized for this, making people look at society’s wrongs and uncomfortable. I wanted to explain the meaning behind my name. Some people have believed VillainAri is my name because of the horror genre, but in fact, is because of the villainization of the other. For context, othering is when people treat people as though they are alien, and as disabled and chronically ill people, we are often othered.

Thank you for reading my blog. I hope you have a wonderful day, and that joy finds you in an unexpected way. Please note I am a mature content channel 18+ as I sometimes play scary games; I play Overwatch or Fortnite. https://www.twitch.tv/villainari

Being Chronically Ill in 2022

While the world is tired of hearing news about Covid19 there is still this aggressiveness towards people who are choosing to wear masks. Seeing artwork by artists online expressing how they feel verbally harassed by people because of the uncomfortable memories around Covid19 masks seem to remind others of. Where I live the pandemic isn’t over, there are still people being hospitalized because of Covid19.

For me masks have protected me, I do not have all my lymph nodes I had a bunch removed because of cancer, when I get sick with the common cold it knocks me down harder than most and tends to obstruct my breathing. I wear a mask to protect myself. I understand the anxieties of masks reminding the world of illness, but diseases are kind of here to stay. Rare complex illnesses, mental health illness, chronic illnesses, cancer, disease is a part of the human condition. That being said, losing one’s temper on someone because it isn’t something you want to do isn’t a kind or understanding approach, it is closed minded and downright childish.

There have been so many times in the last few years I have wanted to stop taking my meds. It isn’t because I don’t want to live, it is because I am tired of having to swallow the pills over and over. The routine of the countless amounts of pills. I don’t go onto other people’s pages and leave nasty comments because I don’t want to take my pills all the time. I make myself take my pills to stop the swelling of MCAS, I take pills because I am missing my parathyroid and thyroid, I take pills to make me move and live. But if I simply ripped a strip off of others because they are doing something I didn’t want to do I would be projecting my own issues onto them.

Part of me hates the pills because they remind me, I am sick, and another part of me knows if I stop taking them the consequences of high blood pressure and anaphylactic shock will be inevitable. By not taking the pills I would land myself in the ER more than I want to be, because honestly, I don’t want to be in the ER at all if I can help it. So, I get up I take the pills, I inject myself when I am struggling to breath because my tongue has erupted in hives. Being sick doesn’t mean I should give up on life and what I want to do. Being sick is a speed bump along the way in life. It may be a mountain of one at times but giving up and giving into the projection of others isn’t something I am willing to do. I suffer when I do not wear a mask, and I suffer when I do not take my meds.

It has been hard to find a balance at times, the sleepless nights caused by random adrenaline dumps keep me awake, hyperPOTS is a terrible thing, but I find something to busy myself in these moments. Laying down in my bed writing a blog post as I am now. There are simple pleasures in life to be grateful for. While I was not wanting to get the Covid19 vaccine, I had to, because of how my body responses to infections. I needed to be protected because other people won’t protect me. I will wear a mask long after Covid19 is, because fragrance and scented products do me harm.

I remind myself every day when my alarm goes off for my meds, I must take my pills. I must do what I can to safeguard the life I have. Yes, pills have side effects, all of them do, however, the effects of me not taking them all will land me in the ER. Being sick is a trail of patience with ourselves at times thus why it is vital to set time aside for you to do the things you love. I love writing, and I hope to do more of it on here soon. I am working on writing books and implementing the edits into the finished ones. I love to draw and create and to do those things I need to take my meds to be in the best state to function for myself.

My community on twitch suggested I draw a spider xenomorph me, as I admire H.R. Gigers work and I love the movie Alien, that is the inspiration behind this piece.

I post videos on my YouTube at least once a week. I am trying too anyways. https://www.youtube.com/channel/UClKvcNyS5xuAqi97pATIl0A