Fitness Blog

My Life in Black and White

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On May 20, 2018, I suffered a TIA, also known as a mini-stroke. I think it was the scariest day of my life. I woke up that day feeling very tired and not like myself. I wasn’t thinking clearly, but I decided to go with it. I also remember 2 days before it happened I kept dropping things with my left hand and thought it was so odd. My mom and I went to the mall that morning but at around 12:30 my left foot started to drag on the floor. I also suffer from neurocardiogenic syncope and myasthenia gravis and a few other things, so whenever something seems off, I think it’s because of one of those. My mom and I got into her car around 12:45 and I realized I hadn’t eaten much, so I went to open an RX bar and my hand wouldn’t allow me to rip the package open. I started to feel really weird…I can’t even describe the feeling. I finally got the wrapper open, I took one bite and all of a sudden I looked straight ahead and said, “Mom, I don’t feel right,” and that was the beginning of the stroke. I didn’t know why during, but I started to pull the food out of my mouth and rub it all over my shirt and pants. I started slurring my words and crying because my brain was telling me one thing but garbage was just coming out of my mouth…I made absolutely no sense. I don’t remember the drive to the ER clearly…my brain was blank. I remember when we got there I couldn’t get up, so the security guard got me out and they rushed me in for an emergency CT scan of my brain and started the TPA. My body was basically jello. 20 minutes after the episode started, the whole left side of my body was numb and it was shaking uncontrollably. It was like a tremor in my leg and arm, and my brain was telling them to stop, but they just couldn’t. These symptoms lasted for about 24 hours. They did 3 MRIs and 2 CT scans all within 24 hours and all came back with no damage, so they said it was a TIA. I don’t think I have ever appreciated life more than I do now and will continue to do so. While it was happening I thought I was dying, I had no clue what was going on, and before the MRI I remember wondering if I would be stuck this way. I couldn’t have asked for a better medical team, though. They saved my life. After experiencing what I did and not being able to do things for myself, I appreciate being able to talk and go to the bathroom, brush my hair and teeth, and just being a human. For 2 days I had to use a commode and wheelchair because I wash unable to go to the bathroom or go anywhere, 3 nurses had to lift me in and out of bed. I couldn’t stop wondering if this was my life now, but because there was no permanent damage that the MRI could show, doctors said I would get better and they were right! It’s 5 days after and everything is back to normal except for my left leg. It’s still slow and drags but I am thankful to be getting better. I think the worst symptom I experienced was not being able to talk. When the doctors asked me questions, I made no sense and they just looked at me and I could tell they felt so sorry for me and they all just kind of frowned whenever I spoke. It was a sad day. 22 year olds don’t have strokes. I don’t smoke. I don’t drink. I have lost a ton of weight and have my cholesterol and blood pressure under control. I don’t have diabetes. I don’t have heart disease. The list goes on and on. But I do have autoimmune diseases and am on a ton of medication. They can’t pinpoint the cause, but they are saying it was most likely the IVIG infusions that I get (I got aseptic meningitis from IVIG too). This experience forced me to take a step back and look at all of the medicine I am putting into my body in a different way. I often wonder if side effects are worth it or not. It’s such a hard decision. I am sick, 100% of the time my body is attacking itself which is such scary thought. Having a TIA changed me in so many ways. Good and bad, but right now I am struggling with who I am and how to get past the trauma it caused to my mental health. Not being able to do things for myself really scared me and I am so sorry to anyone else that has ever had to go through this. All of my health scares and near death experiences if you want to call them that have inspired me to show you what chronic illness is really like. Instagram and all forms of social media show the “pretty” sides of life. I would describe chronic illness as black and white. It’s one or the other…good days or bad days, with no in between. I either feel good enough for everything life throws at me, or I don’t. So, for the next week or two I am going to share some photos in black and white of what living with chronic illness looks like each and every day. Below is a video I took when I was unable to talk normally.

Attitude Is Everything

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“I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value.”

– Hermann Hesse, Siddhartha

Positive thinkers are definitely at an advantage compared to negative thinkers. Relationships, our jobs and health are a part of our every day life and we can sense how our thoughts, whether they’re positive or negative, have an effect on everything we do.

It can be really hard to be positive when you’re sick and wake up every day not feeling like you used to, but there is always something good in every day. I’m forced to deal with uncertainty, a lack of control, and the reality that what I have is forever. So I am not necessarily surprised when when someone can’t be positive 100% of the time while dealing with chronic illness. Then I remember that life is uncertain in general, whether you’re sick or not.

Sometimes I feel this pressure to be positive when people say things like “Everything happens for a reason,” or “I am sure that you will be stronger from this.” When the loved ones of people suffering with illness make space for negative emotions, hopeful feelings and better coping often follow. It’s unrealistic to be positive all of the time. Sometimes I am super up beat and try to push everything aside, but that is just me being in denial of my illness.

I think the best way to cope and remain positive with a chronic illness is by focusing on the things that you can control. Diet, exercise, your career, etc. If you dwell on the past or what could happen in the future you are only making matters worse.

We need friends and family that are ok with listening to both positive and negative feelings that we have, not one or the other.

Why hide how you truly feel to please others? I think that’s unfair to your own self.

Here’s a few things that I do if I am feeling negative:

  1. Remind yourself that better moments are coming. I used to get down on myself and think that the way I felt physically and mentally was forever. Although the illness portion is forever, the way I feel physically isn’t. I have good and bad days. I know that I have to get through it. I held onto the little hope that I had that things would get better. They had to. If I can just get through current feelings and symptoms, better days were coming.
  2. Remind yourself that the situation could be worse. I absolutely hate when people say this to me because it makes me feel like what I am going through isn’t a huge deal, because it is. If you have ever been around me when I flare up you know that it is a huge deal. But, its true. It could be worse. There are people suffering with the same illness that I have in other countries that don’t have the care that I have. For that, I am thankful. I see people who are more sick than I am pursuing their dream career no matter how long it takes them. I am so grateful for the treatments that are available to me.
  3. Find a hobby. I used to enjoy working out, playing sports, doing physical things. Although that stuff is still possible for me to do, it’s not anywhere near how it used to be. Along with those things I loved to draw and paint. I decided to take those things up again and spending my down time doing that as opposed to doing nothing. I think it’s so important to find something that makes you happy.
  4. Reach out to those who understand your situation completely. I am so very thankful to have my family and handful of friends who are there for me no matter what. They can’t relate though, and that can be difficult. I have made so many friends through support groups online and in person. I think these are the people that keep me going if I am being quite honest. They just get you and there’s no better feeling.

Living with chronic illness is not easy by any means, but coming to terms that having a more positive outlook and finding things that make you happy can make all of the difference and make your situation seem a little better than it really is.

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xo

Olivia

 

 

 

 

What’s on Your Mind?

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Chronic illness is a heavy weight you’ve been forced to carry. It’s not your fault, but it’s your reality. Try your best to make the most of it.

Truth is, I’m scared. I have so many health issues that I worry about my future and everyone in it. If you don’t know already, I have myasthenia gravis, gastroparesis, rheumatoid arthritis, dysautonomia (POTS/NCS), I’m a carrier for hemophilia and I have a few mental health struggles. It could be worse…I could be dying, but it’s still really difficult sometimes.

It’s hard to be ill and not be your illness, if that makes sense. I look like your average girl and you probably wouldn’t take a second look if you passed me on the street. But my body is a mess (on the inside).

My goal of this post is to let other spoonies know that it’s ok to be depressed and it’s ok to wonder what your future will be like with a chronic illness…or two, or four. Don’t let anyone tell you that you shouldn’t be worrying about the future. Chances are, they are too. Don’t let anyone tell you things like “but you can’t change it” or “there’s nothing you can do, so stop thinking about it”. Duh, I know those things and you saying them doesn’t make me feel better. Just let me get out my thoughts and concerns.

I think there’s a fine line between complaining too much and just expressing your worries and fears and being anxious about what you’re going through. They are right, you can’t change what you have, so as I said in the first paragraph, try your best to make the most of it. That’s all you can do.

I can’t do many of the things I used to do to release stress, so I am really trying to find new hobbies and things I enjoy that don’t require much physical effort. Before the dysautonomia started I was a gym rat. I spent an hour to two hours there every single day, burning up to 1,000-1,500 calories. Before myasthenia gravis started seven years ago, I used to play softball, tennis, and golf. It is safe to say that I feel like the things that I love are slowly being taken away from me.

Because of this, I recently reached out to a few other spoonies and asked them what they do if they get to far into their heads and thoughts, or if they can’t physically do much. They came up with so many great ideas and I am so thankful for each and every one of them, even if we don’t share the same chronic illnesses. I think they all affect us in similar ways.

So, it’s ok to feel down sometimes. Depression is not weakness. Highs and lows are a part of life. When I was going through what I am going through now in high school, I didn’t really have anyone to talk to because they couldn’t figure out what I had. I had no one to turn to. That is an awful feeling.

I hope to be the person others can turn to when they feel like they have no one. I have been there and it sucks. I wish I had the wonderful support groups that I have now, back then.  There was a time that I thought I wouldn’t survive and I did, and I can do it again.

Sometimes people just need someone to listen. No advice. No words. Just a shoulder, an ear. In fact, listening is often the only thing needed to help someone.

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xo

Olivia

 

 

 

The Ugly Reality of Dysautonomia

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What is dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.  The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.

Common symptoms include: an inability to stay upright, dizziness, vertigo, and fainting, fast, slow, or irregular heartbeat, chest pain, low blood pressure, problems with the gastrointestinal system, nausea, disturbances in the visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, tremors, disrupted sleep pattern, frequent urination, temperature regulation problems, concentration and memory problems, poor appetite, overactive senses, especially when exposed to noise and light.

On May 2, 2018, I had a test called the tilt table test done to help figure out why I’ve been having random syncope spells. Syncope is just a fancy word for fainting.

Back in December I was driving one day and I couldn’t focus. I was passing things on the road…signs, stores, other cars and I was aware that I was passing them, but I couldn’t focus and process what the signs said or what specific stores I had just seen. It was a strange feeling. Little did I know that my blood wasn’t being returned back to my brain but instead it was pooling in my legs and feet. That would happen on and off for the next couple of months.

Sometimes my heart would feel like it was coming out of my chest, so I started to check my heart rate a lot. One time it got up to 146 beats per minute after standing for just 5 minutes, so I knew something was seriously wrong. My blood pressure stayed normal though, and that’s why I was so confused. I was expecting my blood pressure to be dropping because of the faint feeling I have so often.

Then the dizziness started. Every time I stand up, I feel faint. It’s the same feeling of when your blood pressure drops, but in my case it’s not dropping. After sitting for long periods of time I would start to feel faint as well. For example, doing homework, doing my hair and makeup, or eating meals all make me lightheaded. This lead to syncope, but I didn’t realize that my legs were turning blue because I never thought to look at them.

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I actually fainted twice and that’s what lead to an ER visit back in mid April. They ran tests for thyroid issues, heart issues, anemia, anything they could possibly find and all of that came back negative. I was relieved but at the same time I knew I was sick so I wanted them to figure it out.

They admitted me for a night and sent me home the next day with vertigo. I tried meclizine for a week and it did absolutely nothing for my strange cognitive problems and syncope. So, I saw an ENT. All of the tests he ran came back negative as well. Then I came across the word dysauotnomia online. I knew it was that. I made an appointment with an electrophysiologist and he agreed that I had some form of dysautonomia and wanted to do further testing. I came home with a heart monitor for two days and then had the tilt table test.

The tilt table test forces your symptoms to happen. At home if I feel faint or dizzy and tired I just lay down because that’s the only thing that helps me feel better…the blood is being returned to my heart and brain again. During this test you are strapped to a bed and then they lift you up to an 80 degree angle and watch you. They watch your blood pressure, heart rate, and ask how you’re feeling during the whole thing. My resting heart rate was in the 60s-70s and when they lifted me up to an almost standing position, my heart rate shot up to the 140s. For the next 30 minutes I was miserable. My heart was pounding (it stayed in the 130s) and I just wanted to lay down, but they force you to stay in that position until they find a cause for the syncope. At 36 minutes my heart rate shot up to the 160s and then dropped dramatically to the 30s and my blood pressure also made a dramatic drop and I fainted. The nurse performing the test said that my blood pressure got so low, the monitor couldn’t read it.

Neurocardiogenic Syncope. What is it?

Neurocardiogenic syncope (NCS) is caused by a drop in blood pressure, quickly followed by faster then slower heart rate resulting in poor blood and oxygen flow to the brain which results in temporary loss of consciousness.

The onset may be abrupt or gradual and is often associated with warning symptoms such as lightheadedness, dizziness, weakness, feeling hot or cold, fatigue, nausea, abdominal pain, sweating, pallor, visual disturbances or confusion.

When a person stands up, the pull of gravity causes blood to pool in the lower extremities. This can result in inadequate blood supply to the upper body, including the heart and brain. Normally, the body automatically adjusts to the lower blood supply by increasing vascular tone, heart rate and cardiac output. Blood vessels contract, heart rate increases and the blood pressure remains about the same or drops slightly.

In those with neurocardiogenic syncope this mechanism does not always work correctly: with a sudden drop in blood pressure the heart tries to compensate with harder faster contractions- this stimulates receptors in the heart wall which send a message to the brain that the heart is pumping too hard and too fast. In response, the sympathetic portion of the cardiovascular center reduces its impulses to the heart and blood vessels, while the parasympathetic division or “vagal nerve” increases its impulses. This nervous system reflex causes the heart to slow dramatically or even stop and the blood vessels to open up so the blood pressure drops and the brain is no longer receiving adequate blood flow, which then causes fainting.

This is what they think I have but apparently those with this can also have something called POTS at the same time. I am still having testing done, but they know 100% that I have NCS. They also said my heart rhythm changed during the test, so I am not sure yet what that means.

So here’s the ugly truth.

There is no cure for it.

They have a few treatments like beta blockers to help with the heart rate and blood pressure…but I can’t take those because I have myasthenia gravis. So, the tricky part is finding medicine that will work and are safe for all of my medical conditions.  Besides that, they tell you to increase your salt intake, drink tons of water, wear compression socks and get IV fluids every so often.

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No matter how many autoimmune diseases I have been diagnosed with, I am still not prepared for when they say the words “there is no cure” or “it’s chronic”. It’s hard to hear and accept.

I spend a lot of my days laying down and feeling tired for a reason beyond my control.

I think the scariest part for me is knowing that it can happen at any moment and so I am trying to figure this out. It’s a difficult process. I have had the other autoimmune issues for 7 years now and still don’t know what the hell I am doing sometimes. You kind of have to take these challenges day by day.

I don’t know a ton about dysautonomia just yet, but once I find my exact diagnosis I will do everything in my power to stay positive and try to keep my symptoms under control.

The only thing I am looking forward to is meeting other amazing, strong, brave spoonies who go through this life changing diagnosis as well.

xo

Olivia

You Deserve the World

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I was in a serious relationship, or so I thought, for about 4.5 years. During this time I was also diagnosed with a bunch of autoimmune diseases. Although it didn’t work out, I still have hope that there is someone out there who will love me no matter what. In sickness and in health, he will mean it and prove that he means it. I don’t think I would’ve ever understood what that truly meant if things didn’t happen the way that they did. So for that, I am grateful.

In this last year I have gone on dates, but I kind of put dating on hold (mentally) at the same time. I felt unloveable, unworthy and flat out dumb for expecting someone to try to understand what I am going through and will continue to go through for the rest of my life and love me despite all of it. Because I’ve actually had people who made me feel that way. I know you have a choice whether to let things bother you or not, but I don’t know how you can’t feel bad if someone is literally telling you you won’t be loved because you’re sick. Going through what I went through a year ago has taught me so much about what true love is, what patience is, what kindness is, and what selflessness is. It’s not easy to find, but it’s worth waiting for.

You have to love yourself first. You can’t feel sorry for yourself, you can’t blame other people for what you have, you have to learn to accept it because, well, there really is no other choice.

You have to understand your own fears.

I am too sick.

I have too many problems.

No one wants to sit in an infusion center with me every three weeks.

I am no fun.

I am annoying for asking someone for help.

I don’t know if I will be able to have kids one day.

No one likes a sick girl.

They would rather be out having fun instead of sitting home with me on my bad days.

All of my scars are unattractive.

There is nothing sexy about a chronic illness.

These are a few of the things that went through my mind and prevented me from ever attempting to make a meaningful connection. I need to stop thinking like that and blaming myself. It is not my fault that I have to go through this, and no one should EVER, I repeat EVER make you feel like it is. If they do, don’t even bother. Save yourself. Run.

Sometimes I feel like I have to explain myself, but I have learned that I really don’t. It’s not exactly the sexiest thing to have scars on your chest and under your breasts, or to have scars from being stuck with needles so many times. Myasthenia gravis, arthritis, gastroparesis, and whatever you are dealing with are not the sexiest conditions, but then again, what is?

Looks and butterflies are part of every relationship, but once those fade, what really matters? Every relationship goes through it’s ups and downs, and that’s normal. But, it’s the ones who stick around during the downs that matter. And this could go for relationships and friendships.

Someone who stands by you no matter what.

Someone who appreciates everything you do.

Someone who has a sense of humor when things aren’t going as planned.

Someone who respects you.

Someone who kisses your scars, mental and physical.

Someone who loves you through your absolute worst moments.

These are the things that matter.

And someone like me, who craves all of that, would do all of those things in a heartbeat for the person they love. You will meet people who think you are too much, and that’s ok. It doesn’t mean they’re bad people or that they don’t care about you. They just don’t love you and accept everything that comes with you. Don’t settle for someone like that because I promise it will only get worse once all of those butterflies fade away.

 

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You deserve the world even if it means giving it to yourself.

xo

Olivia

 

 

 

My Foggy Brain

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Infusion days make me tired. They make me think about every aspect of my life. School, health, love, what everyone else is up to, my weekend plans, my future, my future husband, kids, career…you name it. I think it’s because I am sitting there for 3 hours in silence with nothing but the sound of the machine pushing the medicine inside of me and the feeling of a blood pressure cuff squeezing my arm every fifteen minutes. Sometimes I am so tired that I look forward to my infusion because I know in a couple of days, I will feel better. Sometimes I just don’t want to be there surrounded by other sick people. I don’t mean that in a rude way, every single person there is strong as hell and always asks you how your day is going…it just makes me depressed to see them go through it, too. Realizing there are so many sick people. Today was one of those days. They come twice a month, every 3 weeks.

One thing that makes me happy is hearing the ring of a bell every so often. It means someone had their last chemo treatment and kicked cancers ass…makes my heart happy.

I can’t believe I had almost one year of good health. 2017 is the best year I’ve had since being diagnosed with myasthenia and gastroparesis. That is until I came down with the flu in December 2017.

Two weeks later…I was driving and all of a sudden I couldn’t focus. Everything around me started to go black and I felt faint. I had to pull over. I called my mom frantic not understanding what was happening, but we chalked it up to me just getting over the flu. I have had the flu once before, but this time it was different.

Over the next couple of months I would occasionally get that same dizziness and I just felt off. I am on a lot of medicine, so it’s very easy to blame that and my MG for being tired. But I knew it wasn’t that. After two months of experiencing this strange dizziness, I began to not focus very well. I have been having a hard time concentrating, specifically when I read. I read the words, but can’t process the information well. I often find myself rereading the simplest of sentences and not understanding what I just read. Then the dizzy spells started to come more frequently, maybe every few days. Until it was happening every single time I stood up. It was time I said something or I would eventually pass out. Well, that ended up happening, twice.

I finally went to the ER to get evaluated because with my medical history, it could honestly be anything. They kept me in the observation room and discharged me the next day with vertigo. I still wasn’t content with this diagnosis, but I agreed to try the medicine they prescribed for a week, and if it didn’t work they were to reevaluate my symptoms. A week went by and nothing made me feel better.

Then I was sitting down one day and my legs felt kind of funny, so I looked down and they were purple. Of course I was freaking out inside, but I try SO hard to believe I’m fine when I know I’m not. Doctors are looking at many possibilities…POTS, inner ear issues, etc. Basically the blood is pooling in my lower extremities causing me to feel faint and confused…it’s not returning to my brain and heart properly.

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I know this isn’t a glamorous shot of my feet, but whoa…I was in shock to see this.
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In this photo, my right foot is clearly red and my left looks normal. I did an experiment and kept my right leg down and elevated my left. After only 5 minutes, this is what happened.

It just makes no sense. I lost 70 pounds last year, I became very active and started to eat literally perfectly.

I really hope to have my answer soon so I can just have a peace of mind.

So here we are now. An undiagnosed Warrior is what I like to call people who are sick, have no clue what the hell is going on, but still remain strong. You’d think I would be used to the feeling of them telling me that I have another autoimmune issue or possibly something else, but every time this happens, part of me wonders…why me?

It reminds me of 7 years ago when they didn’t think anything was wrong, but really I was fighting three autoimmune diseases at once. Only this time, I am not giving up until I know what it is.

Follow me as I find my medical diagnosis.

xo

Olivia

 

The Journey of Self-Positivity With An Autoimmune Disease

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An autoimmune disease is defined as: a disease in which the body produces antibodies that attack its own tissues, leading to the deterioration and in some cases to the destruction of such tissue. There are more than 100 autoimmune diseases out there and they can affect almost any part of the body, including the brain, heart, muscles, skin, eyes, joints, lungs, digestive tract, blood vessels, glands and kidneys. Each one has their own list of symptoms but, inflammation is present in pretty much all of them. So if there is one thing that everyone living with an autoimmune disease can relate to, it’s the chronic fatigue that we feel almost every day.

When you’re diagnosed with one autoimmune disease they may tell you that it’s manageable, but what they don’t normally tell you is that you’re at risk for developing another. A lot of autoimmune diseases present with nonspecific symptoms and can relate to each other in many ways, so figuring out which one can be difficult and time consuming. Symptoms may include nausea, fatigue, weight loss, dizziness, pain, weakness, and low-grade fevers, which can be caused by so many other things other than autoimmunity. For example, lupus and rheumatoid arthritis both cause fatigue, joint pain, anemia, swelling and weakness, so distinguishing between the two may be very difficult.

I am in multiple support groups for my autoimmune diseases and I’m sure every person in them can tell you that just living with one is a full time job. It can become very overwhelming having to keep up with multiple illnesses, going to school, trying to keep a social life all at once, causing stress and anxiety. Lifestyle changes can of course help symptoms, but that’s not always the case. Decreasing stress, getting enough rest, eating healthy and exercising do play a role in how you feel, so when you have an autoimmune disease, being on your A game with all of these things is important.

I am very fortunate to feel as good as I do and receive the treatments that I do. For some, that may not be the case. Finding the right combination of drugs for each patient is also a long process. It took me about 2.5 years to find a combination of medication that worked together. I take pyridostigmine, prednisone, imuran, B-12 supplements, Calcium supplements, and get IVIG infusions every few weeks. But another person may be on a completely different regimen.

A lot of people who are chronically ill may refer to themselves and their friends as “Spoonies” and I’ll explain why. It goes something like this: One day a woman with a chronic illness was eating in a diner with her friend. Her friend asked her what it was really like to live with a chronic illness, and, struggling to find someway to really get this right, the woman collected spoons from the other tables. She then walked her friend through a day, taking away spoons for each activity. The physical removal of a spoon helped her friend realize the real pain of the loss of “normal,” the endless and emotional calculations one who is sick has to make on a day-to-day basis, and the ever-present knowledge that you are sick – its own special isolating misery.

It really is a great analogy. Another one is the “cell-phone theory”.

You plug your phone in at night and wake up the next morning and it’s at 100 percent. When you go to sleep you’re “recharging” for the next day. When you have an autoimmune disease you sometimes don’t know how you will feel the next day. Maybe you wake up and feel 83 percent or maybe you feel 40 percent. But that’s all you have so you have to pick and choose between what you need to do and what is least important. So say it’s a Friday, you have work, school and chores. Those are all things you have to do, but going out with friends that night is not a must, so you cancel because you started the day at 83 percent and now only have 20 percent left. You have to put the phone in battery-saver mode so that when you wake up the next day you don’t feel like you’re charged 83 percent like the day before.

People may research the definition of an autoimmune disease and you get the lame answer of “our bodies are attacking themselves”. I am here to tell you it’s so much more than that, good and bad.

Autoimmune disease is constantly fighting to prove your worth and where you stand in relationships, friendships, and families, where you work and in medical offices. You have to advocate for yourself and express that it’s not “just anxiety” and that you’re not trying to be a nuisance and complain, the feelings you are having are real.

Autoimmune disease is loneliness, leaving you with just your immune system. It’s canceling plans that you were looking forward to at the last minute. It’s nights spent at home alone not wanting to call your friends explaining how you feel because you don’t want them to look at you like you’re complaining all of the time.

Autoimmune disease is scary. Sometimes you feel like a guinea pig because many of the medications that we take have not been around long enough to know the long term effects. At any age, being diagnosed with an autoimmune disease is hard, but when you’re young, it’s taking chemotherapy drugs that in years to come could potentially cause infertility. It’s choosing between being able to get through your day or the risk of not being able to have children down the road.

Autoimmune disease is having to quit dream jobs because you find that it’s just too difficult to get through the day. It’s not because you wanted to give up or because the work was too hard, you just couldn’t handle the stress that it was putting on your body (I have changed my major 3 times now).

Autoimmune disease is annoyance and anger. Doctors may diagnose you and toss you some pills and tell you to go to therapy to deal with your “problems” not providing real answers and comfort.

Autoimmune disease is faking how you truly feel because you fear others will think you’re an annoyance. Often people ask you how you’re feeling and most of the time I answer with, “I’m fine”.

It’s fatigue, vomiting, joint pain, hair loss, cancer, forgetfulness, burning, anger, pain, infertility, surgeries, infusions, random hospital stays, organ transplants, needles, heart/kidney/lung failure, and so much more. It’s being painfully aware of the side effects and complications.

After knowing all of this and living it, it’s so easy to get down on yourself. But I refuse to do that.

Autoimmune disease is courage. It’s facing all of these things and still staying strong.

It’s beautiful. You are left with scars from surgeries and infusions, they’re tattoos with better stories.

It’s inspiring. I have heard so many stories from other spoonies and they sometimes leave me speechless. There are so many strong people out there.

It’s appreciation. When you can’t do everything “perfectly” all of the time, you spend your good days cherishing everything you have.

It’s life changing. This can be both good and bad but always try to focus on the positives. Going though all of this made me a better person. I have met some amazing people along the way.  Sometimes you just need someone else to pick you up and give you the courage to keep going. Support groups help you stay positive when you are feeling down. These are the people who will be there for you when you can’t depend on yourself. And that’s absolutely okay!

xo

Olivia