girl using asthma inhaler

“Purely a lung girl”. That’s what I always tell my doctor. “Do you get migraines?” “No.” “Do you have gastrointestinal issues?” “No.” My answer is always, “I’m purely a lung girl.”

Since I was 2 years old, way too many years ago, I’ve struggled with lung issues. Asthma, asthma affected by allergies, pleurisy, bronchial infections, pneumonia, biopsies. I’ve had them all. Basically in the order presented.

I rarely get fevers, or any other “normal” illnesses, but if something can affect my lungs, it will. It took me many years (if you figure, it started at the age of 2, 51 years to be exact!) to find out that the cause of my lung issues was Alpha 1 antitrypsin deficiency. Alpha 1 is a genetic disorder, characterized by the lack of a protein in the blood that can affect either/or your liver or your lungs. I am purely a lung girl.

I was the first of my family to be diagnosed with this illness, but then pieces began to fall into place. My older brother died at the age of 49 from encapsulated strep pneumonia. Another brother has struggled with a disorder that is affiliated with Alpha 1 for the past 15 years.

Alpha 1 antitrypsin deficiency can cause a myriad of problems: liver disease, lung disease, skin disorders. It is a common genetic form of chronic obstructive pulmonary disease (COPD), particularly at a younger age. While it is often considered a rare disease, those in the know call it “rarely diagnosed,” not really rare.

It is an incurable disease. In my case, it caused irreversible severe COPD. But there is a treatment for me. I get weekly infusions of the missing protein. This helps to keep me healthier and slow the progression of the disease.

I stopped working almost a year ago. I am a special education teacher for pre-k children, and the constant contact with germs and illnesses kept me sick most of the time. Every time I got sick, I lost more lung function. Since, I’ve stopped working, I’m rarely sick! I have started pulmonary rehab and hopefully this will help build my stamina and help me regain some of my life.

Not working makes it difficult to survive financially. I lost my husband a year ago, so I’m on my own. I’m hoping to regain enough function so I can get some kind of part time work.

I’m sharing my story in the hopes that it will open someone else’s eyes, and they will get the (simple finger prick) Alpha 1 test done.

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Thinkstock photo by bubutu-


I have a chronic illness that not many people know about, or that some doctors don’t accept as an actual medical condition. I have what is called chronic vestibular migraine, and when people see the term “migraine” they associate it with a painful headache. However, vestibular migraine is a unique kind of migraine whose main symptom is not pain, but instead dizziness/vertigo.

If people were more observant, they would realize that when I walk, I can’t walk in a straight line, or that when I stand I never stand with my feet together, or else I will fall over. These are the only physical side effects of vestibular migraine that I show, but most of its effects happen internally. Vestibular migraine affects people in many different ways. Some people may have it for a duration of minutes, hours or days. The duration of my vestibular migraine is a little wonky. The easiest way of explaining it is that one week I have a vestibular migraine and then the next week I won’t have it, and then the cycle repeats itself over and over again. So essentially, two weeks out of the month I would have a vestibular migraine, while the other two weeks I don’t have a vestibular migraine.

It does sound great, having two weeks a month without an episode of vestibular migraine; however, this doesn’t mean I don’t have any kind of dizziness/vertigo. Like many with migraines, I do have triggers that will bring about dizziness. I have multiple visual triggers that cause me to become dizzy, such as reading, writing, watching something spin or rock back and forth, watching cars go by me, etc. Every time any of these happen I become dizzy and sometimes nauseous, and this can last for several minutes or even hours.

The challenge comes with being in school, where I have to constantly read and write, which slows me down more than others. For example, when taking a test it takes me much longer to finish than everyone else in my class. This is due to all the reading and writing that I have to do, which makes me dizzy. As a result, it takes me longer to think about how I am going to answer the question and causes me to write slower. I remember that once during my junior year of high school I overheard someone in one of my classes calling me stupid because I could never finish a test during the hour-long period. This made me feel frustrated because I knew the material just like everyone in the class, but I just couldn’t process an answer as quickly as everyone else. I wanted to go up to them and tell them why, but I knew it wouldn’t be of any use to do so.

On another level, just going to school during the days in which I do have a vestibular migraine isn’t always the easiest. I get up for school at 5:45 a.m., and when I am extremely dizzy and nauseous, it is sometimes too difficult to get out of bed. However, I do so and do my morning routine and then head off for school. When I am in class I try extremely hard to focus, but it is hard to when the room is tilting back and forth and spinning around you or you’re just experiencing the other feelings of dizziness which is too difficult to put into words. Walking the hallway is sometimes a nightmare; watching people continuously going by you – triggering your dizziness when you are already dizzy – is the worst. This causes me to either cut people off or walk straight into people, and on the inside I hope they won’t shout at me.

It isn’t school that is difficult, but life in general. I can’t have a driver’s license because it wouldn’t be safe for me to drive. Whenever I am in the car and see cars constantly going by in front of me it makes me so dizzy that I have to close my eyes in order to get rid of my dizziness, and this does not make for safe driving. Even going to the grocery store is difficult. There is so much visual stimulation as I am constantly looking at everything in the store and this causes me to become dizzy. No matter where I go or what I do, I will just become dizzy or my dizziness will become worse.

When it comes to friends and family it isn’t always easy to tell them how I’m feeling. I don’t typically tell my friends that I am not feeling good because I do not want to bother them with the information and I do not think they will really understand. On the days when I do not feel good I will pretend to act like everything is fine, for both my sake and my friend’s sake. When it comes to my family I am a little more open to telling them how I am really feeling, but there are still some days when I still pretend to be fine so that I do not worry them. When it comes to vestibular migraines I feel like I constantly have to put on a mask in order to remain sane. I feel as though others would not care to know what is really wrong with me, so in return I put on this mask to shelter myself. I sometimes feel upset with myself that I have to do this, but other times I know that is just how it is when you are living with a chronic illness.

Lastly, the hardest part about living with chronic vestibular migraine is that I often think about what my life was like before I had vestibular migraines. I remember when my balance was perfect, but now it isn’t the best. Now I walk differently and stand differently in order to remain upright. Now I can’t walk in the dark without any kind of lighting or else I will randomly fall. I remember when I used to be one of the first people in my class to finish a test, and now it isn’t like that anymore. I remember when I didn’t feel gross and sick all the time and could do anything I wanted without worrying it would trigger my dizziness.

However, even though I think about the past from time to time, this doesn’t mean I hate my life living with vestibular migraines. Living with it has opened my eyes to more of the world. It made me realize that people may act “normal” all the time, but it doesn’t mean that they aren’t going through some kind of challenge in their lives. Thanks to the vestibular migraines, I am the strongest I have ever been.

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I am, admittedly, a person who overworks myself, simply because I want to explore many different things all at once and experience as much of life as possible. I was an honors roll university student, leader, mental health advocate, author, and blogger. My life was rich and full, I was happy, and on my way to receiving a double degree in nursing and social work with the dream of opening a shelter in the future.

That was until, in my second year of university, as I soaked up the beauty of life’s wonders, my body also soaked up a large handful of chronic illnesses.

At the time, I ignored the symptoms to keep pursing school. While my seizures, syncope episodes, irregular heartbeat, critically low blood pressure, abnormal blood glucose levels, fatigue, chest pain, severe iron deficiency requiring infusions, and easily breaking bones refused to relent, I refused to acknowledge that I had a problem.

“It’s just the flu,” I’d say. Or, “It’s just a bad virus, it will pass.” I was a train wreck awaiting combustion, and all I wanted was to keep getting A+ plusses and checkmarks on my degree requirements list.

Then one day, I had a seizure in my class. Humiliated that 300 students watched me violently convulse and scream, I apologized profusely to my professor who had to cancel the lecture.

He replied, “The only thing you need to apologize for is if you don’t take care of yourself.”

I stood there stunned for a moment.

I realized that I couldn’t “be the sick caring for the sick.”

If my dream was truly to take care of others, how much more important was it to take care of myself first? Ultimately, I made the decision to take a break from school. I knew that if I kept going down my current path and pushing myself far beyond reasonable limits, I would only continue to suffer. I’d rather graduate a year later and be healthy, than graduate on time and be sick and miserable.

Although I had to say goodbye to many amazing professors, aides, and peers, those goodbyes means many more bright hellos in the future.

I am about two months into my break from school, and already there has been a massive upswing in my health. Because I took the time to see a myriad of specialists and undergo testing, I have greater diagnostic clarity now. During school, I had no idea what was going on with my body and didn’t want to pause my life to figure it out.

Last week, I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS) and autonomic neuropathy, both of which essentially explain every symptom I’ve experienced this year. When I allowed neurology, cardiology, and internal medicine doctors to come into my life and take care of me, I found answers. With a very modified, strict diet, compression socks, as well as medication, my symptoms have subsided to an extent, and it’s only been a week! I can only imagine the improvement I will see over the next year as I dedicate it to my health and wellness.

Sometimes, the greatest lessons don’t come from a textbook.

So, to the professor who encouraged me to take a break from the books and take a look at my health, thank you.  I am rejuvenated, properly medicated, and on the road to even greater success now.

Oh, and I look forward to Acing your exam.

Next year.

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Thinkstock Image By: kasto80

I remember the day I was diagnosed with lupus. And I remember the weeks that followed as I floated around in a haze of shock, not truly able to comprehend what was happening. I wasn’t in denial, but I hadn’t quite grasped what had occurred and that, although I had been discharged from hospital, my life had been altered; it would never be as I knew it.

I don’t know exactly when reality set in, but I remember going from a state of disbelief, to acceptance and then for a short while I found myself at resignation. It wasn’t that I gave up, or started to think my life was over because of lupus, but I started to see my illness as the biggest part of my life.

My greatest mistake was letting lupus take center stage while I tried to live my life around it, as if it was the starring actor in the movie that was my life. Do you know what it’s like to take a backseat role in your own life? For a moment there I did.

I can pinpoint the moment I took my life back into my own hands, as it was the day I contacted an old friend from school to start personal training. It took me weeks to get the courage just to send a simple message inquiring whether he had space for me, but it was that simple action that kick-started my ascent back to controlling my life.

I started going to the gym because I wanted power, not only in the physical sense, but mentally as well. I wanted to feel as if I was strong enough to beat my illness and to challenge it, just as it had challenged me.

My starting goal was merely to get fit and tone myself, and I had counted on struggling and having to consciously push myself. But I hadn’t counted on a resurgence in my confidence and the feeling that not only could I do this, but I could do anything.

In the past 12 months I have reinvented myself more than most people would in a lifetime. I have been so many different versions of myself: The girl who was broken, the girl diagnosed with lupus, the girl who was struggling, the girl who was coping.

But somewhere along the line I realized that I couldn’t stop at just “coping.” I couldn’t live the rest of my life just getting by with my condition; I needed more than that.

So, I unknowingly took myself on a journey — a journey of reevaluation, of empowerment, of confidence and power. Though I didn’t know it at the time of embarkation, I needed to prove something to myself.

I needed to prove that I am so much bigger, and so much more than my lupus.

There was a time, not long ago where I took a step back to realize I was becoming but a pawn in my own life. It was at this point I hit a fork in the road where there were two distinct options: Take another step back, sink into the background and give it all up, or shake it off, step up to the plate and get ready to fight for what’s rightfully mine.

There are make-or-break moments in life, and this was the most significant of my life to date. I can’t pretend it was easy. But, looking back, it’s funny how something that seemed so trivial at the time was the most important decision I ever made.

It wasn’t simply making the decision to start going to the gym that was so monumental, but deciding that I was so much more than what I was settling for in that moment.

It was deciding that I wasn’t born to be a pawn. I’m a queen. This is my game and so long as I can help it, you’ll play by my rules!

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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I have a condition called Ehlers-Danlos syndrome. EDS is a chronic disorder that causes my joints to easily dislocate. Symptoms for me are everything from pain to fatigue, stomach issues, dislocations, and skin problems, anxiety and depression, even dizziness and passing out.

I know you have 200 students you deal with all the time, and I know I’m not the only one with problems. You’ve got students with other conditions or students who come from disadvantaged homes. I’m not saying you should pay more attention to me than to them because you shouldn’t. It’s not a competition to see who’s got the most to deal with. But I’m guessing you don’t know what EDS is. You don’t know what my life is like outside of your classroom.

My teachers are my biggest role models. You are who I strive every day to be. When I’m in your class, I’m there to learn. When I’m in your class, you know more than I do about the subject. I don’t go up to you and say, “Are you sure 5+5 is 10?” or “You know, I think we were playing field hockey wrong today.” So why do you think it’s OK to tell me I’ll be fine tomorrow or should just push through the pain?

I know more about my pain than you do. If you were in as much pain as I am every day, you would not be standing up. It hurts. You know that pain scale they ask you about at the ER? Your 10 is probably my four. There are mornings where it takes me five minutes to put on my jeans, and often those are the easy days. I come to school every day, and I come to your class and do my very best.

Whether you’re teaching my science class or my gym class (two things I don’t like and am not good at), I want to be there. I want to be there and learn and participate just like all of my classmates. I want to get through a whole class period without having to get up and leave because I can’t get my shoulder to stay in its place. Five years ago I would be the first person to admit that I’d do anything to get out of gym class. But now, I would give anything to play volleyball like the other kids and be with my friends.

When I show up in your class and I tell you I can’t do something, I mean it. When I tell you I dislocated my hip last night so I can’t do certain things today, it’s not because I don’t want to try. It’s because I don’t want you to have to deal with a girl writhing around on your classroom floor slamming her foot into a wall trying to get her hip to stay in its socket. When I say, “I dislocated my shoulder, may I please go in the hallway and fix it?” and you don’t see me screaming in pain, it’s because it happens all the time. I’m not faking it.

Name a type of doctor, any type. I have one. Cardiologist? Yeah. Neurologist? Psychologist? An ENT, a metabolic doctor, a gastroenterologist. I could keep going, but my point is that I’m a high schooler. I shouldn’t even have to know what a gastroenterologist does.

I deal with this in my social life, and my disorder changes everything I do, but I absolutely refuse to let EDS inhibit my education. I’ve learned to accept that I’m different and figured out what works for me in classrooms. Being different and needing accommodations doesn’t make me less capable. Although my disorder will always be a part of me, it doesn’t define who I am. You are an educator, and I know I’m not the first you’ve met or the last person you’ll meet who has EDS. So please get informed and know the signs. Invisible illnesses like EDS are just as important as any other disorder.

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Thinkstock photo by demaerre

When I was 18, I moved to New York. I had lived in the same mid-sized, Michigan city for my entire life (why is it that 18 feels like an absolute eternity when you’re that age?) and I felt this electric pang in my ribcage to leave my family’s comfortable grasp and take a chance on myself. To explore the slate-gray sidewalks and pre-war walk-ups that I would soon fall in love with, adopt and forever consider home.

It’s not so important that you know the ins-and-outs of my time there, but here’s a Tweet-worthy synopsis if you’re curious: one hellishly satisfying degree later, infinite all-nighters, five months abroad, three Manhattan apartments and one very lovable Brooklyn house. I drank a lot of coffee and ate my weight in everything bagels, too.

new york city

What is notable, to me at least, is that I was brave. I spent six years with no vestibular system, bouncing vision and almost daily migraine pain, in a constant state of “You will not break me, New York!” And while I have since moved back to the achingly comfortable grasp of my life here in the Midwest, I am reminded of a time in my life when I wasn’t afraid to stand up to…my life.

When you’re sick, every day feels like an illogical obstacle course. On some mornings, I actually fight myself on if I have to brush my teeth or not. I kid you not, this is a thing that I do and I apologize to my mirror (and dentist) for everything I’ve ever said when my entire body felt like quicksand. It’s not you, it’s entirely me.

But the tricky thing about life is that – no matter whether you are fighting an endless battle with your body or not – every day of the week feels like a magnet. A dichotomy of push-and-pull, attraction and irreversible repelling.

Whatever your feelings on faith and the universe, I think we can all agree that we have very little control over what happens to us. Opportunities fade, love grows and people walk in and out of our life – sometimes without reason. But what we can control is our reaction to it. How we choose to feel, how we choose to rise and how we choose to be brave.

When I look back on that decision that I made over a decade ago, I am flooded with hope. I am comforted by the fact that if I was once that brave, I can be so again.

I am still figuring out a lot of things about how to embrace my new life of slowness – it’s like crystallized honey at times. Embarrassingly, it does include a lot of mirrored pep talks and inspirational fireside chats (sponsored by my laptop and Netflix). But I refuse to believe that our circumstances solely dictate our stories.

Sometimes you just have to push the magnet back, dig in, and brush your teeth even when every fiber of your being says today is not your day. It is. Do it anyway.

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