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. 

A Dreamer and an Activist

I went to my history professor's office hours a few weeks ago and while we were talking she mentioned that her next area of study was the '60s and '70s. She said she wanted to answer this question: is love enough to change the world? 

My first instinct was to respond emphatically: "YES! Love can change the world!" 

But this year I have been working on translating my beliefs into actions. I have been focused on actually doing something about the things that are important to me. I don't want to spend my whole life talking and never actually do anything. 

So I had a mini existential crisis in my history professor's office. I had these two parts of me-- the dreamer and the activist-- giving me two opposing answers to the same question. I thought about this question as I left her office and for several days afterwards. 

I know that love is powerful. I have seen it in my own life and in others'. I believe strongly in the power of good thoughts and intentions. You don't even have to take my word for it as it was actually proven in an experiment done by the HeartMath Institute. In this experiment, a group of people each held a beaker with three strands of DNA. They were told to partially unwind two of them (to different extents) and leave the third alone. Half of the people thought about unwinding the DNA while also employing positive emotions and intentionality. The other half thought about unwinding the DNA with no positive emotion or intent. The people that employed love and intent successfully unwound the two strands of DNA while leaving the third unchanged. They literally changed DNA through positive emotion. 

This is mind-blowing. 

They altered reality through thoughts and emotion. 

((If you would like to read more about this study you can look at a summary from the institute that ran the experiment here and you can read the actual report here. I highly recommend looking into it!))

So love is powerful. But is that the answer to the question? Is love enough to change the world? What good are thoughts and ideas and emotion if we do not allow them to propel us into action? Does the power of love negate the need for this action? 

In wake of the recent Las Vegas shooting, many people expressed their love and support for the victims on social media. People sent their "thoughts and prayers" to those affected. Although this is obviously a good sentiment, it also became a point of outrage. 

"Thoughts and prayers are not enough," the internet screamed, "Help us." 

People began to offer real tangible solutions to the problem. Locations for blood drives were shared online, fundraisers were started, pictures of missing people were circulated. 

Is love enough to change the world? 

The thoughts and prayers (and love) were good, but the medical and financial support was better. Finding missing people was better. Action was better. 

Eventually I came to my conclusion.

 Love changes people and people change the world. 

I am both a dreamer and an activist. I love people fiercely. I use my intentionality to make a difference. But I also act whenever possible. I don't let myself be powerless. I go out and I do things and I let my actions make a difference too. As a college student, I am full of dreams of changing the world and making things better. I want to shape public policy and end poverty and hunger and save the environment and curate equality. I want to make a difference and have an impact. 

This question was important to me because changing the world is on my agenda. 

Love changes people. It can physically alter strands of DNA and it can physically alter your reality. You can use it to empower yourself and those around you. It can change people. And people who are loved and loving and empowered go on to change the world. 

I want to be one of those world-changing people and I want my friends and family and neighbors and peers to be those people too. So I will continue to be both a dreamer and an activist and I would like to invite you to do the same. Join me in a daily attempt to change the world. Spread love. Act on your morals. We can make things better. 

You are now part of my world-changing army, and this is our motto: 

Love changes people, and people change the world. 

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.

You Are Allowed

I have often wondered about the best way to describe depression to someone that doesn't struggle with it. I have never found quite the right words to explain the magnitude and depth of the experience. The best I've come up with is: it hurts to be alive. Physically continuing to exist is painful. There is pain in your heart and weight on your soul and staying alive during this time is the hardest thing I've ever done.
I have felt this omnipresent pain and I am hurting again just writing about it. It's too close, too real.

These bad periods have left a permanent mark on me. They affect the way I talk and think and remember and feel. I am haunted, both by the memory of these times and by the knowledge that they will come again.

Whether you have depression or not, I'm sure you can reflect on the most painful experience of your life and agree that you would not want to repeat it. You would probably do everything in your power to avoid it.

I do, too.

I can always feel myself beginning the downward spiral. I notice it like you notice your hand on a hot stove. When I see it coming, I run away from it. I refuse to acknowledge it, I refuse to tell anyone about it, I refuse to spend any significant amount of time noticing it's existence. I continue with my life as if every breath is not becoming increasingly painful. I push it away until it becomes strong enough to push me back.

I am traumatized by my depression. I am never ready to face it again.

A few months ago I had a friend reach out to me for help. She told me about her trials and what she was scared of. She echoed a sentiment I have heard countless times: that she was embarrassed and guilty that something seemingly trivial was causing her such emotional turmoil.
I told her what I tell every single person that comes to me with their challenges: your emotions are valid.

I think we kind of learned, as a society, that there are certain ways we should feel. When something bad happens you should feel sad (but only if its significant enough) and when something good happens you should feel happy (as long as that doesn't upset anyone else). We have taught ourselves that, depending on the situation, only certain emotions are acceptable.
If you want to feel something, you better check the emotional guidebook first.

I am here to tell you that that is so incredibly false.

I have depression. I can literally get suicidal over chemical changes in my brain. Nothing actually happens, I just get sad. What is more trivial than that? If I am allowed to be depressed over nothing, you are allowed to be sad about nothing and everything and anything. Conversely, you're totally allowed to be emotionally stable during particularly gruesome trials. There isn't a tear quota you have to fill or an anger meter you have to rise to.

The significance of an event does not legitimize your feelings, and the insignificance of an event does not negate them. You do not need to justify or explain your emotions. You do not need permission to feel them. No matter the situation, your emotions are valid.  I firmly believe that this is true for every single one of you. I am working on applying that to myself as well.

I have found that being accepting of all my emotions brings me more happiness. The past few times I have felt the downward spiral begin, I have looked at it head-on. I accept that some nights I am just going to hurt and there isn't a whole lot anyone can do about it. You'd be surprised how much easier it is to just be sad than it is to forcefully attempt to push the sadness away (while in reality still being sad). Instead, I allow myself to feel negative emotions, and then I allow myself to heal from them.

This new process has made my depression so much easier to manage.
Accepting the validity of my emotions is the kindest thing I have ever done for myself.

I am begging you to be kind to yourself as well. Allow yourself to be happy or sad or angry or scared. Don't run from those feelings, embrace them. Let them touch you and teach you, and then, once you have grown from them, I can assure you that you will be more than capable of moving past them.

To You

I am so excited to announce that the Bateman Horne Center published one of my posts! You can find it here! It is an awesome website that has everything from patient stories to new medical research. If you have or are interested in ME/CFS or FM, you should definitely check it out!


Since my first post, I have had people reach out to me with love and support. I am hearing your stories and I am moved. It is humbling to be trusted with such personal experiences.

I am so incredibly touched by people that resonate with my story. I've spent my entire life idolizing the quotes and words of others. To have my own words shared in this way is an unbelievably surreal experience. It is something I never even thought to dream of.

My heart is about to burst at your kind words and positive feedback.

Thank you, thank you, thank you.

Cloudy Skies

I started experiencing symptoms of depression when I was 16. That first year was really really hard. I was self-harming and planning my suicide and I wasn't letting myself eat or sleep. I didn't tell my family or get help for over 8 months. Honestly the only reason I'm still alive is because I am an expert procrastinator. Every time I decided to do it, I just told myself I could always do it later. Eventually, later became never. 

I am much better now. I haven't self-harmed in months. I have a healthy relationship with food and sleep and although I still experience weeks that are as bad as my first 8 months, they never last as long. I got through it the first time, and I know I can get through those periods again. 

The thing with depression, though, is that it is never gone. It's like a cloud that follows you around. Some days its a thunderstorm cloud, and it pours you with rain and strikes you with lightening. These storms can last days or months or years. 

Other days it's just a fluffy white cloud. The fluffy clouds can also last days or months or years.

Either way it is always there, blocking the sun at least partially. You never go anywhere or feel anything without your cloud above you. 

I know that certain conditions will make my cloud darker. Social media, for example, can start to make my cloud get stormy. I have learned to delete my instagram and twitter and snapchat when I feel myself getting worse. It helps immensely. 

Conversely, since moving to flagstaff, I have also had times where my clouds are fluffier than I've ever seen them. It's a new and unfamiliar sensation. Anytime I am perfectly content I cannot help but to bask in that happiness. I take note of these times and I work to recreate them. I remember them during the stormy days and they help me not lose hope. 

But during these happy experiences, my cloud is still there. I am celebrating the fact that it is white and fluffy and small enough to let some sunshine through, but I am still acutely aware of its existence. 

My depression is always there. It can be hard to accept this, to look straight-on at the facts: that I live in a body that is incapable of letting me be happy. I have to help it along with medicine and healthy food and candles. It's getting easier to manage every day, but I know from experience that it can come back and electrocute me anytime it wants, and I will have to start over. 

This makes happy times bittersweet (because I know how fleeting the feeling is) and sad times easier (because I know the fluffy clouds can come back too). 

Essentially, "I am both happy and sad and I am still trying to figure out how that could be" (Stephen Chibosky).

To those of you that struggle with depression: I see you, and I see your cloud, and I know that these supposedly opposite emotions are eternally intertwined. I see that your struggle is constant and I am cheering you on as you try to understand the complexity of your emotions. 

I wish you the sunniest of skies and the fluffiest of clouds. 

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.

Pass or Fail

We live in a culture that demands clearly defined roles for every individual. I see these roles in my own life, and I hope you see them in yours because I can assure you they are there. 

Before I got sick I was a Runner and a Student. This was my identity. I created and perpetuated this image of myself. I spent time with Runners and I complained about Homework and I worked hard at these things and I made them Me. 

Then I got sick, and suddenly I wasn't a Runner or a Student. I was physically incapable of being either of those things. I felt like I was failing because I was failing to perform in a way that represented the Identities I had chosen.

Eventually, I moved past this, and my new identity was Sick Person. I didn't have anything else anymore, as I wasn't really doing anything other than being sick. And then, I had a few months where I was almost better. I was working out and I had a job and I functioned almost like a healthy person does. This period of time was a blessing, but it also dismantled my identity of Sick Person. I felt like I was failing because I was failing to adhere to this Identity that had been forced upon me.

I have had many identities that have been created and then replaced. I'm sure you have to. Some of my greatest sorrows have come from watching the deconstruction of an identity.

But I do not have an Identity that can be destroyed. I do not cease to be a runner just because I am not currently running. I do not cease to be sick just because I have a few good days. These are experiences that have irrevocably molded my physical, mental, and emotional self. They are part of my identity whether I am actively participating in them or not.

A key concept in Buddhist teaching is the Non-Self. They believe that nothing is permanent, and that your conception of self is incorrect because you are constantly in a state of becoming. You cannot know yourself because you cease to be yourself with every second that passes. In Buddhism, suffering is caused by our desire to cling to an Identity that is not real. 

This is maybe extreme, but I think it is important to consider when evaluating your perception of yourself. 

When you create an Identity, you create guidelines that limit your ability to become who you are. You use these guidelines as a way of measuring your self-worth. You act under this Identity and you use it to determine your success or your failure. 

But if you strip away these Identities you will find that at your core you are simply a Person. And "you can't pass or fail at being a person, dear"  (Neil Gaiman). 

I am a Runner (even though I haven't run more than 4 miles in the past 2 years) and I am a Student (even when I miss class) and I am a Sick Person (even on days where I am able to function at a reasonable level). I cannot pass or fail at these things because they are simply experiences that I have acquired during my journey through Personhood.

Throughout my life I am going to continue to gather new abilities and mindsets. I am constantly in a state of becoming. I hope that as I become more, I don't let these things determine who I am as an individual. 

I have many talents and traits and thoughts and ideas and these in summation, not individually, determine who I am.