What to Wear to an IV therapy appointment!

Hi friends! Continuing our IV therapy theme I wanted to write about what to wear to an IV therapy appointment. I've always been in the comfort > style mindset, as my mom can attest. Here's a quick story about me: when I was in 3rd grade, my mom made me wear jeans to school one day. I cried for the entire day. I even threw up my meatball sub at lunch because I was so mad and uncomfortable. I was an angel- except when it came to clothes. Then I was a demon (sorry mom). My comfort-seeking ways have not gone down with age, so I still live in yoga pants and big t-shirts. Although I have my signature style down, there are a few things about IVs that make dressing extra difficult. Keep reading to see What I wear to an IV therapy appointment.

What to Wear to an IV Therapy Appointment 

• If you have long hair, tie it up. I prefer a bun so that there's no hair hanging around my face at all, but a braid, ponytail, or half-up would work too. There is nothing more annoying than having hair in your face when you can't reach it, and with one arm chained to an IV, you probably won't be able to fix it. The name of the game here is secure and away from the face. 
• Most of my IVs were during winter, so I liked to pretend that wearing a long-sleeve shirt would be fine. It is fine, but it's also an additional annoyance that you don't have any control over at all once that IV is in. Take my word for it and wear short sleeves. My go-to is a t-shirt with a large jacket over. Once I was in the office, I would take my jacket off and use it as a blanket (because it lowers your body temperature a little bit to have cold IV fluid running through your veins). 
• Pants. Trust me. Wear pants. I'm generally a shorts girl, but IVs just call for pants. I know I'm not alone in this because I never saw a single person wearing shorts at my IV clinic. Not once. Pants make it easier to get up and down from an IV chair, it provides temperature balance for the short-sleeve shirt you'll be wearing (😜) and it makes it easier and more convenient to hold things on your lap. I wore leggings for every single IV appointment I had and I do not regret it one bit. I recommend wearing the most comfortable pants you own. 
• No skirts or dresses. I have nothing against skirts and dresses, but IVs are just not the time. You don't want to have your legs up without some kind of pants on, and you don't want to worry about shaving before your appointment. Skirts and dresses are also much less likely to stay put on your body than a pair of pants is. If it takes all of your energy and focus to stand up and sit down without ripping a needle or catheter out of your arm, you don't want to have to worry about arranging your skirt one-handedly so that your shorts/underwear are the only things visible. You want clothing that will stay put without any effort from you. 
• No Rompers or Buttons. This one is probably obvious by now, but how are you going to use buttons with one hand?! Even worse are rompers-- it is literally impossible to take a romper off with an IV... you'd have to take the top of the romper off around the entire line, IV bag, and pole that holds it up. Then, to put it back on, you'd have to do the exact reverse. 
• Close-toed shoes. Especially if the IV clinic has reclining seats, you want those bad boys strapped on tight. Again, remember to focus on comfort, but it's not like you'll be doing much walking so it's less important with shoes than with anything else. 
• Limited Jewelry and Accessories. The goal here is to have as few things on your body as possible. Fewer accessories mean fewer things to annoy you and fewer things you have to mess with. When it comes to IV fashion, less is more. 
• If possible, pockets. Keep in mind that you will only have one viable hand to hold your belongings, open doors, move items, flush toilets... etc. Pockets will free up your hands so that you are better capable of doing everything else. 

Getting ready for your first IV is really scary. I was terrified in general, and wondering what on earth I should wear just added to the anxiety. I hope this post eases the first-IV-jitters for anyone about to start an IV. I have been living and breathing IVs, and they impact all areas of my life, even what I wear. If you're interested in IVs and what they are, check out my other posts labeled IV Therapy!

5 IV therapy complications

IV therapy is the most effective treatment I've ever done. While I'm grateful for the benefits I've received, I'm going to give it to you straight: they are really difficult. They're expensive, they take 6-8 hours a day, and they're painful. It's even worse when I get a complication. Here are a few IV therapy complications I've had, what they were like, and what you can do about them!

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#1: Superficial Phlebitis
This complication is actually fairly common for people that get regular IV treatments (See! Normal things happen to me! It isn't all crazy stuff!). Phlebitis really just means inflammation of a vein. This is the same thing as deep vein thrombosis, except it's in a surface vein rather than a deep vein. Usually, I can tell when I'm going to get this after an IV because the IV itself is painful and I can feel the irritation in my vein. I've only had this happen when I've had an IV in my hand, but it can happen in any part of your body. It usually only lasts 1-2 weeks, but if the vein hardens (like mine always does) it can last for much longer. 

This is the most painful and long-lasting complication I've had, so I try to be really pro-active about it. Using a heating pad on the vein during an IV, asking your IV administrator to put a numbing solution in your IV, and taking care of veins in between treatments can reduce the risk of getting phlebitis. Even with all of these precautions, I've had phlebitis 4 times in 6 months. Once I have it, I use a combination of topical treatments. This includes Traumeel (an anti-inflammatory ointment highly recommended by doctors and patients), Copaiba Essential Oil (although any anti-inflammatory essential oil would be beneficial), and various drugstore muscle balms (Tiger's Balm, IcyHot, BioFreeze, etc). Basically, I use anything and everything that could possibly help in any way🤣

#2: Superficial Thrombophlebitis aka a Blood Clot
This is basically phlebitis but it's caused by a blood clot. I've been cursed with being thiqq-- and my blood is no exception. I got a blood clot because my blood was backed into the catheter by a nurse. They did this to avoid using a brand new line because my IV fluids had drained too low. Once the blood clots, they can no longer administer the IV through that vein have to start the entire process over again. I got stabbed about 5 times the day this happened because they had to place the catheter twice. It was awful.

There are a few ways to avoid this happening. First, putting blood thinners in the IV fluids. This is a great solution because it thins your blood enough to decrease the chance of complications, but is usually out of your system by the end of the day. This means you don't have to worry about the complications of taking a blood thinner medication regularly. Second, asking for a large catheter. My IV clinic has varying sized catheters, so I get the largest one possible. The bigger the catheter is, the less likely your blood cells will clog it up. Third, don't let your IV administrator back blood into your line! Always ask if there's another way to do what they need. Unless they're drawing your blood, there probably is! 

#3: Cellulitis aka an Infection
I got home after one of my infusions to realize that my left hand was REALLY swollen. "It's nothing!" I told myself, as if anything in my life is ever actually nothing. The next morning my left hand was much larger than my right hand. I ended up having to go to Urgent Care and was prescribed antibiotics. This one is fairly easy to spot, as symptoms include swelling, pain, redness, and heat coming from the vein.

The only way to treat this is with prescribed antibiotics, but elevating the limb and applying warm and cool compresses can help. Once the infection and swelling go down, you're left with plain old phlebitis. I got this infection about a month ago and it's still painful and inflamed because of the remaining phlebitis, which as stated earlier, usually takes several weeks to go down.

#4: Allergic reaction  
I am not allergic to any of my IVs at the starting dose, but when my doctor upped my dosage of Glutathione I had a mild allergic reaction to it. The onset was really sudden and extremely painful. Once my doctor realized what was happening, she exchanged my IV bag for saline and gave me some medication to help the symptoms, which immediately knocked me out. My boyfriend had to take off work to pick me up and take me home (thanks honey😜), where I slept for a solid 20 hours.

One of the biggest risks of IV therapy is an allergic reaction, and it can easily cause death if the reaction is severe enough. As such, IV administrators are trained to watch carefully during the first dose of a new IV bag, and they usually explain to you what symptoms to watch out for as well. There really isn't any way to prevent this, but it is always important to notify your doctor if you experience any unpleasant symptoms. I waited a while before telling my nurse because I didn't want to sound like a baby, and I would have had a lot less pain if I had just told them at the beginning.

#5: Infiltration
Picture this: you're at an IV, peacefully watching Keeping Up with the Kardashians. Suddenly, you look down and there is a lump the size of a baseball in your arm, and it is bright orange (the same color as your IV fluid). Would you panic a little? I sure did. Infiltration happens when the catheter gets dislodged and the IV fluid starts leaking into your tissue. Usually, people notice it right away because it hurts pretty dang bad, but I guess Keeping Up with the Kardashians was just too enthralling. Once an IV infiltrates, it has to be taken out and placed in a different limb.

If caught early, nothing really happens. It just hurts for a bit. In my case, enough fluid had filled my arm that I had to elevate and undergo massage therapy to move the fluids into the lymphatic drainage system. According to my doctor, severe infiltration can result in nerve damage and other more-serious side effects, so it's important to check up on your IV every now and then.
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These complications made my IV experience really difficult. I've had constant pain in one of my hands for the past couple months, and I have to constantly deal with a new complication, the effects, and the treatment. The physical and emotional toll of IV therapy is nothing to scoff at. If you're currently undergoing IV therapy, I hope these descriptions will help you either avoid or proactively treat these complications. If you aren't, I hope you enjoy learning a thing or two about IVs and the last 6 months of my life!

Sources:https://www.aurorahealthcare.org/services/heart-vascular/conditions/phlebitis#Overviewhttps://www.healthline.com/health/cellulitishttps://www.healthline.com/health/superficial-thrombophlebitishttps://www.aafp.org/afp/2003/1001/p1325.html

IV Therapy: What it is and how it works

I have spent the last 6 months undergoing IV therapy. Before I started it, I heard a lot about it from my chronic illness friends, but I was scared to ask questions and didn't really understand how it worked. Now, after around 20 IV therapy sessions (and almost every IV complication possible), I am a self-proclaimed IV-therapy aficionado. And you can be too!

Here's a quick summary: IV stands for Intravenous, and IV therapy essentially means that you're putting a liquid directly into your veins. An IV can be anything from a simple saline drip to chemotherapy. If you're putting liquid in your veins, it's an IV.

I get my IVs at a clinic, although there are IV centers, doctor's offices, and hospitals that provide IV services as well.  When I go in for an IV, they take my blood pressure, pulse, and temperature, and then I go back to the room of chairs.

This is me right before my first-ever IV therapy session. Look at how scared and awkward I was!

Once settled, there are various steps taken to prep my veins (heating pad, nitroglycerin ointment, numbing cream), and then they put in the needle, insert the catheter, take out the needle, and hook me up to the IV. 

I was prescribed two different IV therapy treatments. The first is an iron drip, which was used to treat anemia. This IV took 20-40 minutes total, and I only had to do three sessions before I experienced results. Overall it was relatively fast and easy. Fun fact about Iron IVs, if they don't take them out correctly, the IV fluid can tattoo your skin! 

The second treatment is a four-bag regimine that includes Poly-MVA, Phosphatidyl Choline, Glutathione, and Immune Boost. Let me explain those scary-looking science words to you!

1) Poly-MVA stands for Palladium Lipoic Acid Complex (Poly), Minerals (M), Vitamins (V), and Amino Acids (A). The main goal of this treatment is to promote energy production. Essentially, it helps with cellular reconstruction which in turn helps cells work better and more efficiently. Here are some cool things about Poly-MVA:

• It is used to treat cancer patients as it starves cancer cells and strengthens healthy cells
• It removes heavy metals from the bloodstream
• It promotes liver, nerve, and immune function

2) Phosphatidyl Choline helps build cellular membranes, which dictates what can enter and leave your cells. This helps with:

• Toxicity and Mold
• Energy and Fatigue
• Brain Injuries

3) Glutathione is an antioxidant that is found in the body naturally. It helps your body detox on a cellular level.  This, in turn, helps kick-start the body's natural processes and strengthens defense and immunity systems. This makes it helpful for:

• Neurological Conditions
• Parkinson's Disease
• Cancer
• Heart Disease

4) Immune Boost (you probably already guessed it...) helps boost the immune system! This is beneficial for:

• Anyone with an immune system!

I use these IVs to treat fibromyalgia, chronic fatigue, POTS, to help detox heavy metals and toxins, and to promote cellular energy production and strength. As stated previously, IVs are used to treat a variety of conditions, and can even be used for colds, the flu, and hangovers! An IV is like medication- there are many kinds, they treat many things, and they have many purposes. If you have any questions about these IVs, or IVs in general, head over to my Instagram @future.dead.person and leave me a comment or a DM! And don't forget to look out for my next IV Therapy post! (Spoiler: it discusses the complications I've had from IVs!) 

Sources: 
http://lotusrainclinic.com/polymva
https://www.gwcim.com/services/phosphatidylcholine/
https://www.webmd.com/vitamins/ai/ingredientmono-717/glutathione
https://flowersmedical.com/iv-nutrition/

Be Mad

For the first 16 years of my life, I was perfectly healthy. My exercise levels, eating habits, and health records were above average.
So when I walked into my pediatrician's office with invisible symptoms and no obvious explanation, I was completely brushed off. I saw them 4 separate times before my mom took me to a new doctor in hopes of actually being heard. I saw this new PCP 4 or 5 times before she, too, dismissed me. Over the next several years, doctors told me over and over again that I was fine.

My family, of course, knew that something was very wrong. They lived with me. They saw me sleep for days at a time and lose my ability to process simple information. They saw my speaking and thinking abilities decline. They watched as my existence collapsed around me.
But this was a private struggle.

My doctors were not there for these moments, so they did not understand. My friends and extended family and church leaders and teachers were not there for these moments either.

Essentially every person in my life thought that my symptoms were my choices, and without a diagnosis, I couldn't prove them wrong. You would think that the world would be kind to a young, sick girl, but instead I was blamed for my own illness. Not being able to live my life was hard enough, but almost worse was the omnipresent disapproval. I internalized this, and I began questioning myself. I began to think that maybe it was my fault that I was sick. I agreed with everyone around me: I was being lazy. I was to blame. I was useless.

One day, I decided that I was done being sick. I told myself it was over. The doctors were right; it was in my head. So I got out of bed and I pulled out my old running shoes and I went on a 20 minute run. I did the whole thing without fainting, but within the first ten steps I had a searing pain in the back of my head and my body felt weak. When I got back, I collapsed on my bed and slept for 4 days.

This was obviously incredibly counter-productive. I should've been taking care of myself, not trying to meet uninformed outsiders' expectations.

I'm sick ((haha get it?)) of ignorant people thinking that they know anything at all about my situation. It's been over two years since this started and I still have to deal with unjust scrutiny on a daily basis.

Last Christmas my extended family thought it would be okay to start a rumor that I have an eating disorder, and that is why I am sick. Apparently, two diagnoses from medical professionals after years of testing mean nothing to people that want to make their own assumptions. Apparently, I am no longer the authority on my own health. Why support me with my debilitating illness when you can make up your own story out of thin air, just for kicks, instead?

I am frequently yelled at or given dirty looks when I go to my car parked in a handicap spot. I get extreme anxiety about entering or leaving my vehicle. Sometimes its easier to make myself sick from walking than to endure public scrutiny over whether or not I deserve the spot. Why mind your own business when you can make a disabled person feel bad about using accommodation?

I have spent years being argued over and gossiped about, tossed from doctor to doctor, looked over, ignored, and hated on because of my sickness. I've been judged because of my physical appearance by doctors, friends, family, and strangers.

I used to be a sixteen-year-old girl that thought that everyone had a right to their opinion. I used to feel bad for making people uncomfortable, and I felt bad about being upset by the words people said. As a kid, as a female, as someone that tries to be nice to everyone I meet, I am used to swallowing my anger and letting things be. I assume, always, that I am in the wrong.
I go on runs instead of listening to my body beg for sleep and I park in the back of the lot instead of daring to take a handicap spot. I let others blame me, and then I blamed myself.

No longer.

I am furious at the members of my family that decided to take an emotionally and physically traumatic experience and turn it into a way of hurting me even more. I am furious at the doctors that refused to take me seriously, despite having no reason not to. I am furious at the teachers that tried to stop me from taking online classes because they thought I was being lazy. I am furious at the members of my church that called me a sinner for not attending because I was too sick to go. I am furious at every single individual that thought that their ignorant input meant anything at all.

I have learned that I do not have any obligation towards anyone, ever. I never have to justify myself or my illness or my limitations to anyone. I do not have to inform stupid people about my personal experiences in order for them to respect me. My trauma is not justification for me to be treated fairly. I deserve to be treated fairly regardless.

I have accepted the fact that this is a battle I will have to fight for the rest of my life. I will gladly fight it. I am done accepting what the world wants to think about me.

I am aware that the majority of people that read my blog do not have a chronic invisible illness, let alone two. I know that it might be hard for you to relate to me, but I hope that you are as angry as I am at the way people treat each other. Stop being timid and shy and nice about things that deserve your anger. I thought I did not deserve to be angry, but I was so incredibly wrong. I hope you look at the things you let slide in your life and you stop letting them slide. I want you to look at your swallowed anger and find what matters to you. Then, be angry, be loud, be heard.

I am furious, and you should be too.

What Lack of Disability Accommodation Means to Me

I would like to begin by apologizing for the long break between posts. The problem with writing about disability and depression is that you have to deal with disability and depression and sometimes that alone is all-consuming.
Thank you for your patience.
xx Brooklyn

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Before I had a diagnosis I was not legally disabled, and as such I had difficulty finding others with similar experiences. Despite several years of having a disability, I have only recently found myself to be part of the disability community.  Settling into this newfound headspace has been enlightening for me. I have found a group of people who advocate for themselves, and by doing so advocate for me. 

As I have watched these individuals speak about their experiences as a marginalized group, I have found that I am becoming increasingly impassioned about my own rights. 

When I first moved into my apartment, the only handicap spots were at the basement level of the parking garage. As the site was still undergoing construction, elevators had not been put in yet. This means that to park in a handicap spot I had to walk up several flights of stairs to get to my apartment. I called the property manager and asked about when handicap parking on all levels would be implemented, and they said that it was "indefinite". 

When I received my accommodation reports for my classes, one of them simply said that they couldn't make any modifications for me. This means that if I am sick and miss one of these class periods, my grade is affected the same as every other student's despite my medically-supported need for a modified attendance policy. 

I woke up terribly sick last week but I still forced myself to go to school. I drove to my second class of the day but found no handicap spots open within a half mile of the classroom. I was too sick to walk that far so instead of going to class I parked my car and I cried. 

A few months ago I would have been sad about these things, but I would have told myself that this is just what happens when you're disabled. I would have reminded myself that I am a burden and that I am not allowed to ask for more than what everyone else gets. 

Now, however, I refuse to speak to myself this way. I refuse to accept the discrimination of these companies. 

These may seem like insignificant experiences. When you are not disabled, it is hard to understand the impact that these types of things can have. If you are having trouble understanding how this makes me feel, let me explain.

I spend my entire life trying to convince people that my existence is worth accommodating.

When my school refuses to give me attendance modification, they are telling me that I, as a person, am not worth the extra hassle that it would take to create a new attendance policy. They are saying that I don't deserve assistance despite the legal and medical proof that it is a necessity. 

When my school has inadequate disability parking, they are telling me that it is too inconvenient to make it so that I can go to class. They will pay for my tuition but they will not pay for my accommodation. They want me there as long as I am able-bodied. 

When my building refuses to make their apartments handicap accessible, they are telling me that my existence is inconvenient to them. It would take too much time and money and effort for them to make it so that I can walk into my unit.

It really sucks when your own home doesn't want you. 

I am so tired of being told that I do not matter. I am tired of asking people to respect my worth as a human being. 

There is guilt and shame around asking for accommodations. It feels like cheating. But it isn't cheating. As my boyfriend told me a few days ago, it's just "leveling the playing field". 

If you have a disability of any kind, physical, mental, or emotional, I hope you do not hesitate to ask for accommodation. I hope you remember that your capabilities have absolutely no effect on your value as a human being. I hope you know that it isn't taking the easy way out. It's giving yourself the power to live your life as fully as possible. No able-bodied person deserves that more than you do. 

If you don't have a disability, I hope you take time to notice the messages you are sending to those around you. Do you get irritated when someone needs a little extra time or assistance? Do you find it inconvenient to adjust your plans to accommodate those that are less able? If you do, I can assure you it is much much more inconvenient for them than it is for you. 

Please stand up for your disabled friends and family. Together we can stop society from inundating our chronically ill and disabled friends with messages of incompetence and shame. 

Our lives are hard enough without having to beg to be respected as human beings. 

I am done being told that I am a burden. I will not listen to these messages anymore.

I hope you will help me fight them. 

Loved

When you have a disability you assume that you are too much for people. I have spent the past several years feeling like I am too much.

When I got sick, I lost pretty much all of my friends. This took me a really long time to process and become okay with, but eventually I realized that my life was just too complicated for people my age to handle. I was going through something big, and the people that I loved did not know how to love me back. I began to take comfort in this because it meant that it wasn't my fault-- it was just another symptom of my sickness. I came to terms with the fact that my life was too heavy and complex and distorted for people to understand. This was how I handled my lack of social support.

Flash forward two years and I found myself terrified of going to college because I was terrified of meeting new people.  I knew that I couldn't expect people to understand me- both the me that I am and the me that I would be if I wasn't sick. I knew that if I hadn't even accepted my conditions yet there was no way anyone else would. I knew that it was impossible for me to forge lasting connections or meaningful friendships with people that didn't really understand me or my life or my experiences.

I saw myself as a hinderance to other people. I didn't want to get close to others because then my limitations would become their limitations. I saw the way that my disability hurt me, and I could only assume it would hurt others as well.

I tend to do everything I can to make myself as easy to live with as possible. My disability is invisible, so I don't even have to let people know about it. I quietly slip away when I'm too sick to participate and I silently opt out of activities that are too strenuous. I pretend I'm not about to pass out after walking up stairs and I hide my sickness behind a tired-college-student persona.
I was expecting to go to school, meet some decent people, participate in their lives as much as I was able to, and quietly disappear the rest of the time.

Instead I was blessed enough to find the most caring and compassionate people I have ever met. I mentioned my conditions to them and they did their own research, they learned everything they could about POTS and ME so that they could be aware of my capabilities. They asked me questions and learned about my experiences and did everything in their power to understand me as a person and as a patient. They recognize the difference between who I am and who I want to be without looking down on me. They take me to doctors appointments, bring extra jackets because they know I'll be cold, take the elevator every time, and lend me their beds when I'm too sick to stand.

I see my limitations creeping into their lives but they don't act like they're being confined. They don't complain or even mention it at all. They automatically take into account my schedule and energy levels and needs and they adjust accordingly. They do everything in their power to make me as healthy and happy as possible. They don't see my illness as a burden like I thought everyone did. They love me and they love the experiences that have shaped me and they think that I am worth the extra hassle.

I was sitting with some of my friends one day watching a movie and I suddenly got really sad. I didn't move or say a single word and yet one of my friends grabbed my hand and whispered to me, "I'm here". These people love me enough to notice when I'm not okay and help me through it. They say things like "Are you okay?", "Maybe you should go to sleep early tonight", "Call me if you need me", "If anything happened to you I would be devastated", "How can I help you?", "I'm here for you", and "Everything is okay".

My friends have given me a space where not only am I allowed to take care of myself, I am also allowed to lean on others without being a burden. I no longer feel the need to make my existence as convenient for other people as possible. I no longer feel like I am disappointing or hurting others. I no longer feel like I am too much. 

I am thankful beyond words for the beautiful souls that I have met in my short time here. I don't know what I could have possibly done to deserve these people in my life. I am frustrated that my description of their goodness is inadequate. I can't seem to find the words to explain the peace and joy and comfort and sense of home that they give me.

I am working on accepting and perpetuating their kindness.

I invite you to do the same with those around you. Love them, and let them love you. You deserve it. You are not, and never have been, too much.

Compassion

In my sophomore year of high school I wrote a research paper about vaccines. Literally every piece of evidence I found said that vaccinations were completely safe. The ideas linking vaccination and autism were published by a man who had a lot to gain from such findings, and they were quickly discredited. Since then, I have been immovable in my stance on vaccines. I'm usually really open-minded, but this was the one issue that I refused to see any other side on. People would tell me that they didn't "believe in" vaccines and I would smile politely while thinking about how completely and totally uneducated they were.

One time when I was a nanny, one of the kids I was watching had a friend come over to play. His mom stayed and chatted with me a little, and as it was back-to-school time she mentioned that she still needed to fill out paperwork to get her kids waived from vaccines. My opinion of her instantly changed. She told me about how she had relatives with autism and had experienced some sketchy things and didn't trust vaccinations. I quickly changed the subject, and then went home and ranted about her opinion.

Herd immunity! I cried.

Eradicated diseases! 

Measles at Disneyland!

She was wrong, and dumb, and I knew it. I felt like as a Sick Person I was allowed to be outraged that she would put her own kids and everyone else in danger.

Flash forward a few months and I find myself speaking with my new doctor (a ME/CFS and FM specialist!!). We discuss some of the new research about ME and she mentions that the HPV vaccine is a leading culprit in causing ME in young teenage girls.

I was shocked. It was honestly hard to breathe as I tried to comprehend this. The years of hell, the stripping of my identity, the pain and the sleep and the complete inability to function, I could've caused all that myself. It could've been so easily prevented.

Now, I don't mean to say that any of my opinions on this subject are fact. I got mono before I got ME, and it's a lot more likely that that triggered it than an HPV vaccination did. I am not, in any way, trying to say that you shouldn't get vaccinated. I am no doctor or researcher or other medical professional.

I'm just saying that I'm scared now. I hear vaccine and I think about what I've gone through and I get freaked about putting something in my body that (maybe) has the capability to ruin my entire life.
Now I look back at the woman that I briefly spoke to and her autistic family members. I understand a lot better why an experience like that might be traumatizing.

I'm embarrassed and disappointed that I had to go through a similar experience myself before I developed compassion for this woman. I should've been kind and compassionate either way.
I guess, in the end, emotion plays just as big a role in decision-making as facts do. I can know all the facts in the world but if I don't understand a person's emotions and experiences and thought-processes, I really can't understand their decisions.

I really really hope that I can be better at being compassionate to those that think differently than me, even if I don't see any reason for it.

I thought I was compassionate, and this was kind of a wake up call for me.
If this is something you struggle with, maybe this can be a wake-up call for you too.

Understanding

My condition is confusing and complicated and even I don’t know what’s happening most of the time. My energy and pain levels can change literally instantaneously. I never have any idea how I’m going to feel even from one minute to the next. I can’t tell you how many times I’ve woken up feeling amazing only to find myself sitting on the floor 10 minutes later because I suddenly lost the ability to stand.

In summation: my condition is very versatile.

I never feel good, but I feel varying levels of bad. Some days are neutral bad and some days are super bad. For like a month over the summer I even had a few days where I was just plain neutral.

One of the many, many downsides of this is that people will see me on a neutral-bad day and assume that that is my normal. They see me at school or church or work and they don’t understand that what they see is me at my absolute best. My best is painstakingly dragging myself out of the house. My best is only missing one day of school a week. My best is neutral-BAD.

I absolutely LOVE my good days, but my good days are by no means the definition of my condition. People don’t see me on the days that I don’t wake up or on the days I am in the hospital or days that I am crying in my room unable to even call for help because the noise will hurt too badly.

No one that I know truly understands what I’ve gone through. Even my beautiful, compassionate, empathetic mother, who was and continues to be my greatest supporter and biggest advocate, cannot identify with my journey.

This knowledge is lonely. I’m sure all of you have experienced something and wished for someone to understand your situation. That’s why books and quotes and music and words of any kind are so powerful. When you read or hear something that you resonate with, you feel less alone. You know that someone, somewhere, thinks the way you do.

When I am feeling sad or lonely or misunderstood (as every emo teen does), this is what makes me feel better:

No one can really understand my individual experience, but that’s okay, because I would never want someone to understand my experiences. I would never wish what I’ve gone through on anyone. I am glad that my family and friends are incapable of connecting with me in this way.

If you seek a perfect understanding of your experience, you will most likely not find it. Even if someone has experienced the exact same thing as you, they think and feel and act differently, and therefore it will have affected them differently.

As I said, I have yet to find someone that truly understands my situation. Instead of being frustrated with those that do not grasp the severity of my condition, I am trying to find power in my ability to explain it to them. I am learning to find beauty in this process. I have found that I have to meet people halfway, and that I can’t expect them to understand me until I explain myself to them.

I hope you all find power and beauty in your ability to communicate your experiences with others.

I want to find that power myself.

At the very least, it’s pretty fun to watch people’s faces when I tell them that my heart doesn’t work.

Kindness is A Major 🔑

On Tuesdays and Thursdays, I have my longest class. It’s still only an hour and 15 minutes, but for someone that stops circulating blood after 8 minutes of sitting, it feels like forever. I love being at school, but sitting through this class generally ranges from mildly uncomfortable to completely hellish. In summary: Tuesdays and Thursdays are hard.

Last Thursday, I left this class feeling dizzy and weak. I drove to the building that my next class was in, and I parked in my designated handicap parking spot. After I pulled in, I noticed that a red car had pulled up behind me, blocking my car from behind. There were two large guys in the car, and they had their windows down with music blasting. I made uncomfortable eye contact with one of them while getting out of my car. I felt awkward and confused and so I walked in quickly, forgetting to grab my water bottle or lunch. As I walked away, one of the men yelled after me, across the courtyard, “Bitch doesn’t look handicapped”.

At this point I was already almost inside and couldn’t do or say anything without turning around and walking all the way back to their car. In all honesty I probably wouldn’t have said anything anyways. What do you do in that kind of situation? Explain the complicated internal processes that your body is incapable of completing? Flip them off? Give them a copy of your extensive medical files?

Instead I continued walking with my head down. I felt dirty and ashamed and threatened. I was scared of these men and the manner in which they spoke to me.

I got increasingly sick throughout the day due to the emotional stress of the event and my lack of food or water. By the time my last class got out I was seeing black and shaking so badly I couldn’t drive myself home. See, I am sick! I thought, as if my failing vision and unstable gait somehow proved to those long-gone men that I deserved a handicapped spot.

I wish this was an article about not caring about other people’s opinions, but it isn’t. I’m not at a place where I can comfortably do that. I spent two years being told by medical professionals that my inability to function was in my head, that it was my fault, that it wasn’t real. I just can’t handle being told that by anyone else, even rando college kids. Hopefully I’ll get there someday.

For now, this is an article about being kind.

I hope that when you see something that doesn’t make sense to you, you proceed with compassion and curiosity rather than judgement and scorn.

I look completely and totally healthy, but I am not. My heart doesn’t work and my brain is inflamed and my body is attacking itself. I simply do not have the energy to give to people who think that their limited understanding is truth.

Let’s both try to not be those people.

Sickness and Guilt

In my life, being chronically ill has meant not working out, not going to school, not getting out of bed, and on some days not even waking up. 

Within the first few months of being sick I had to switch to online schooling. It was completely impossible for me to pay attention during class and within the first month of my senior year I had already accrued almost enough absences to be disqualified from graduating. Now, several years later, I have recently begun in-person schooling again. I absolutely love being at school again. I love going to my classes, I love talking to people, and I love being able to leave the house. 

Of course, on some days, this is still not feasible. Some mornings I wake up for school and realize I am not able to get out of bed. When this happens, I usually go back to sleep only to awake a few hours later and realize that I've missed another day of school.

I don't drink, but I imagine this experience is similar to when someone wakes up after a night of hard partying. You feel like crap, you're incapable of functioning like a normal human, you've lost hours of your life and you're not really sure what happened during them, and on top of all of that, you're now way behind on work. 

It is super not fun.

On days like this, it is so easy to hate yourself. You wake up trapped in a body that won't let you do the things you want to do. I'm a college student that desperately wants to attend class. I just want to be able to do what literally everyone around me is doing with absolutely no problem. I want to go to class and learn and stay awake long enough to do my homework. I would love to get a job. I want to have the energy to meet new people and spend time with my friends. 

The bottom line is that I'm never going to be able to do all of those things without issue. On some days, I'm almost okay with that fact. But on other days, especially those staying-in-bed days, I hate the body that I am trapped in.

There are a lot of very negative emotions that come with that hatred:

• Anger. I get mad at life and at karma and at God and at any other cosmic being that I can point my anger towards. Most of all, I get mad at myself for having such huge limitations in the first place.
• Hopelessness. When I'm feeling particularly sick, it makes me take a good long look at my life. Sometimes I am weighted down by the prospect of living my entire life this way. I look at the next 4+ years of school, a future job, raising kids and having a family, and I cannot help but feel that none of those things are worth doing. They make me too tired.  There is no cure for my conditions. There is nothing I can do to fix myself. I am stuck in a body that does not function. This knowledge is pretty good at driving all hope away. 
• Guilt. Above all, I feel guilty for allowing myself to be sick. I feel guilty for not going to school, for not cleaning my room, or for canceling plans with friends. I feel as if it is my fault that I cannot get out of bed. I feel like I've let down my teachers and my peers and my roommates and my parents and that cosmic force that I was yelling at before. I feel like I am being lazy. 

Negative feelings are natural and normal and you are absolutely allowed to feel them. I would never sit here behind my laptop screen and tell you that your life isn't that hard, you just have to look on the bright side! Ew. I want to puke just writing that. 

But sick days do get a little easier when you accept that your limitations are a part of the life that is uniquely yours. This is not easy. I am not particularly good at this, and I've been practicing for years. 

Some days I sit in my bed and cry and scream and curse the world.

Other days, I do what I can, forget what I can't, and let myself be sick. After cursing the world a little. 

We live in a fast-paced society. We don't celebrate the athlete that takes a rest day (even though they need that rest day to become better!) or the mom that put her kids to bed early (even though she might have strangled them otherwise!). We celebrate the workaholic, the gym rat, and the supermom.

Days off are allowed. Taking care of yourself is allowed. Canceling plans is allowed. Being sad about being sick is allowed.  

Being okay with your sick days is most definitely allowed.