Why My Asthma Isn’t Like Most Others

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When people mention the word “asthma,” they often think they know what they’re up against. You see the stereotypical “asthmatic” on TV as a “geek” (I won’t even go in to why that bothers me so much). Then add the word “brittle” to the equation — and believe me, I’ve seen it all.

I’ve been told countless times by people who “also have asthma” that they “know” how I feel. They say it can’t be that bad, but they don’t face challenges with it like I do. I’ve even had health professionals try and tell me my asthma is “routine.”

The truth is my asthma isn’t like most others.

My asthma is unpredictable. It’s limiting. I can go from being OK to having to go to the hospital within an hour. My asthma scarred my lungs, and I have to use oxygen to be able to function.

It means simple things like walking around my home, playing with my pets or even just sitting and typing on my laptop are extremely exhausting. I don’t work, not because I don’t want to (believe me, if I could I would), but because I can’t. I rely on people to help me on a daily basis with the simple things like washing, dressing and cooking meals. I have to take more than 50 tablets a day, nebulizers, inhalers and other medication regularly to keep myself going. This isn’t a typical life of a 29-year-old woman. But this is what I’ve had to deal with since I was 21 when all of this began to go bad.

Before my asthma turned into what it is today, I was just at the beginning of my adventures. I had just left home and moved into my own little place and was starting a degree in media studies, which would have set me up for my ultimate goal: to teach at my local college.

My home wasn’t much — room in a shared house in the attic — but it was the perfect place to watch a film, read a book or even get out a sketchpad and draw. I was happy. It was just me, my hamster and my guinea pig. We were a little family of our own.

But I didn’t expect to be wheelchair-bound by age 25 due to my asthma and a spinal problem I had since childhood called hereditary spastic paraplegia, which attacks the nerves in my spinal cord and makes them degenerate. I also had an old injury since I was a child that got worse as I got older. By 27, I would be using oxygen at home, along with nebulizers and other things. Back then, I was able to control my asthma with inhalers, but things happened and it became what it is now.

The problem is that a lot of people don’t really know what brittle asthma is. When people see me out and about in my chair, they tend to ask me what my illness is and why I am the way I am. I have to explain to them that unlike most people who can control asthma with inhalers, my asthma is a lot more aggressive and actively shuts down my lungs piece by piece. I then have the typical lecture that “(insert name here) has asthma, but it isn’t like that,” along with other clichés such as, “You’re much too young to be going through all that,” which, oddly enough, doesn’t make me feel better. It actually makes me feel as though my condition is being trivialized and I have to justify to yet more people (and myself) that what I am going through is real. It does hurt. It isn’t easy.

I want people to see what asthma really is. It’s a deadly disease, and it can become so severe that life is limited. You have to make the most of every day because you don’t know when that “last” attack is coming.

There have been times I have feared for my life and have nearly lost the fight. I’m not asking for sympathy or anything shallow like that. I just ask that people don’t judge what they think they know about me and get to know what is really going on here.

Follow this journey on My Journey, Every Step of the Way.

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3 Reasons Why Asthma Is My Motivator

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Breathe in…breathe out. Breathe in…breathe out. Breathe in…breathe out.

I was 10 when I had my first asthma attack. I was running around outside with my friends playing tag, and my throat started tightening. I had no idea what was happening to me except for the fact that I couldn’t get any oxygen. I didn’t give up and somehow made my way to my teacher, hand signals and all. It was scary going to the hospital; I never knew what it was like to not be in control of my body. I was a carefree, fun-loving pre-teen who thought anything was possible. Why would this happen to me?

Fast forward more than a decade, and now I carry my inhaler around with me religiously in case my body decides to give up on me. Asthma has so many different faces. Sometimes asthma is a visible illness, where daily tasks prove difficult, such as walking up a flight of stairs. Other times it’s not as visible, which is where I would fit in. Most people wouldn’t know I have asthma unless they saw me use my inhaler. Some days I feel helpless because I can’t control my body. My asthma is triggered by a laundry list of allergies, strong odors such as cigarette smoke and more importantly, exercise.

I love to exercise, and that’s when my asthma is the most active. I love to box, play tennis and participate in indoor cycling. All of these activities take a great amount of stamina, especially from my lungs. I have to make sure I take my inhaler before I exercise, and when I’m not feeling my strongest, take the rest I need. I should say that again: take the rest I need. Sometimes I’d like to think I can keep going without taking the rest, and that I’m somehow no longer going to have asthma. I have to remind myself it’s a called a chronic condition for a reason. However, there are three reasons this chronic illness is my motivator:

1. Patience

Being asthmatic has taught me patience, and it motivates me to pay attention to my body. When I don’t exercise as much, I can tell by the way my body responds. I’m completely out of breath, and it takes me a couple of days, sometimes weeks, to gain back the stamina in my lungs. It’s incredibly frustrating, but it definitely motivates me to work out more.

woman standing next to a wooden railing overlooking a river
Kamilah taking a rest from hiking in Great Falls, Virginia

2. Hope

I think exercise has allowed me to rebuild parts of my identity I was told I would lose, such as being a high-performing athlete. When you have a chronic illness, you feel robbed of your identity, maybe even hopeless. Constantly exercising and listening to my body is what helps me monitor my asthma as well as maintain a healthy lifestyle. There’s hope when you know your body, because in turn, you know your limits. And somehow, you get your power back.

3. Routine

Uncertainty is something anyone with a chronic illness will tell you crosses their mind daily. Several questions come to mind when I think about my asthma. Will I be able to run in five years? Will my asthma completely debilitate me? I found exercise helps me regulate my asthma, although asthma attacks are largely unpredictable. It gives me comfort knowing I can manage some part of this illness, and I think everyone has to find what motivates them, then stick to it.

My overall goal is to remain healthy and to monitor my asthma as needed. Healthy looks different on everyone, but you’ll only know what you’re capable of once you try something new.

Follow this journey on Anchored in Health.

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I Am Not a Chronic Illness Warrior

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I’m just a woman who lives day to day. As the John Denver song says, “Some days are diamonds, some days are stones.” In my version, the song says, “Some days are diamonds, some days are big rocks that squash me.”

I have 21 different chronic health conditions. Five of them could be fatal at any time. Does the fact that I manage the effects of each one every day make me a warrior? I don’t think so – I think it makes me a good manager, even though I could never put it on a resume.

When I think of the phrase, “I am a warrior,” I think of being a fighter. But these illnesses are part of me now. So in my mind, being a chronic illness warrior means I am fighting myself. Which I freely admit I did when I first started getting those 21 diagnoses. When I received my disability notification from Social Security, my single diagnosis was chronic, severe asthma. I then spent a lot of time being angry at my body for failing me at a time when I had just reached my career goal and fighting the knowledge that I was no longer going to be able to do the job that I loved.

In fact, I fought myself for the next five or six years as my body reacted to the massive doses of steroids that had kept me alive but made the the list of my health conditions get longer and longer. During that time, I would definitely call myself a warrior, battling the diagnoses by simultaneously ignoring the symptoms and then over-reacting to the crises that occurred. I fought the idea that I was going to have to take care of myself if I didn’t want to continue the trips to the emergency room and the days of hospitalizations. And what I found was that the more I fought the idea of being sick by being the warrior against my body, the sicker I got. Once I stepped back and acknowledged the fact that I was sick and that I had to take care of myself, I realized how much energy I had been putting into my battle with my body.

Discovering the book “How to Be Sick” by Toni Bernhard with its message of “although one’s body may be sick, one’s mind can be at peace,” was a life-changer for me. I’ve done my best to embrace that philosophy in my daily life.

So now I’m no longer a chronic illness warrior, I’m just someone who gets through each day — sometimes managing to dodge those big rocks, sometimes getting squashed by them.

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What I Wish Others Understood About Asthma and the Air We Breathe

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I grew up breathing second-hand cigarette smoke, but I didn’t develop asthma until I was in my late 40s and early 50s. At first, I was diagnosed with cough variant asthma, because instead of wheezing, I would have an uncontrollable cough that usually started with a cold. My asthma is not well-controlled with medications, and I have been unable to work as a registered nurse for the past three years because every time I got a virus, I would end up wheezing and coughing and being short of breath for weeks. It is really hard to avoid airborne germs when you work in a hospital. With an immune problem that makes me more prone to infections as well, I was spending most of my days sick.

Now asthma is a serious disease that can quickly go from “I’m breathing easily” to “Yikes! I need to go to the ER now! I can’t get enough air!” My biggest frustration is that I can’t control what the air is like in public places. Those without lung problems might not know how hard certain things can make it for people with lung disease to breathe. Not being able to breathe easily is scary and potentially deadly. One example of air quality causing breathing problems happened when my past employer had a large quantity of mulch spread around the outside of the building. The combination of a strong aroma and mold made it impossible to walk from the parking lot to the building without getting an asthma attack. If they had put out a notice about it beforehand, I could have used a mask and saved myself misery. But some businesses don’t announce these things because people don’t always realize mulch can cause breathing difficulties.

Strong odors from tobacco products (like cigarette smoke), perfumes, soaps and cleaning solutions can cause an asthma attack, so I have to avoid these things also. This makes getting to the unscented laundry detergent another one of those hold-your-breath-and-hurry projects.

Another practice that affects air quality is burning household trash or yard waste. Those who burn these items are within their rights if it is allowed in their community. But I feel angry and frustrated when I have to move inside or close my windows because others are burning trash. Why does the right to burn garbage supersede my right to breathe?

Unfortunately, I don’t always remember these things, so every once in a while I get an asthma attack from not paying attention. Recently, I had to drive into the city to see my specialist. It was a hot, humid day. On top of that, the parking garage was crowded due to construction; there were too few parking spaces for all the people who had appointments that day. After driving around for 20 minutes seeking a parking space, I was running late. I forgot the mask in my purse, rushed through the garage to my appointment and arrived with a full blown asthma attack! I should have put my mask on, but honestly I don’t want to need a mask. They are hot and uncomfortable and can make it feel harder to breathe. I also feel self-conscious with one on.

So if you have healthy lungs, please remember that what you do can affect the air those of us with asthma breathe as well as your own air. For example, if you burn trash or yard waste, consider exploring alternative ways to get rid of it. Or if you have associates, friends or family members with lung disease, consider not wearing strong smelling perfumes or colognes around them or using strong smelling cleaning products around them.

Be an advocate for clean air in your community!

And lastly, if you have a loved one with asthma, remind them to take and use a mask when air conditions warrant it. They will likely be grateful you did!

Image via Thinkstock Images

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What I Realized About My Asthma After a Tickle Fight Triggered an Attack

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When I was 3 years old, I had my first asthma attack. I don’t remember what it was like — on account of I was 3 — but it was a pretty important moment in my life all the same. I had to get a nebulizer and start taking regular medication. The doctors said I would probably grow out of it.

When I was 10, I came down with a cold. It exacerbated my asthma, and we went to the ER on a Friday night. Apparently, I screamed and struggled wildly while I was in the ER. I don’t remember what that was like either — on account of I was delirious — but my mom said it took four people to get me under control. The next thing I remembered was waking up on a Tuesday morning. The doctors said I would probably grow out of it.

Common colds aren’t the only things that trigger my asthma attacks, though. Sometimes it’s cold weather, warm weather or a sudden or gradual change between the two. Sometimes it’s damp air or dry air, dust, smoke, pollen or aerosol sprays. Sometimes it’s something in grass after it’s been mowed. Sometimes it’s strong emotions, and often it takes very little physical exertion.

When I was 12, my teacher insisted I climb a mountain (OK, it was a 469-foot high volcanic plug, but I was 12 — it looked like a mountain) as part of a class trip. I insisted it was a terrible idea, but she was unsympathetic. When I had an asthma attack at the top (surprise!), she scolded me for falling behind the rest of the class. I was pretty sure I would grow out of it.

When I was 19, I came down with a cold. I hadn’t been sick enough to go to the hospital in years, and I didn’t think anything of it, even as it lingered and my chest grew tighter and my breathing grew shallower. Even when the exertion of walking to the bathroom was enough to leave me breathless and frightened. Even when I couldn’t lie comfortably in bed because no matter what I did, I couldn’t breathe deeply enough.

Finally, I went to the ER and was admitted with an “acute exacerbation of asthma.” I had a chest X-ray that looked clear. I kept my head this time, and I complained that couldn’t possibly be right — there was something wrong. I stayed the night and had another X-ray, and finally, someone conceded I had a chest infection and prescribed antibiotics. I spent two more nights in ICU and another on the ward before I could breathe well enough to go home. I was still waiting to grow out of it.

Last year, when I was 22, I was losing a tickle fight to my boyfriend when I had an asthma attack. If I run to catch my train, if I walk by someone smoking, if someone sprays their deodorant nearby or if I laugh too hard, I might have an asthma attack.

When I was younger, it was easy to put my asthma to the back of my mind as something I would grow out of eventually, and so it was easy to not take my asthma seriously. Since my last visit to the ER four years ago, I’ve met with a specialist to learn more about what happens during an attack and how my medication helps.

Since losing that tickle fight, I’ve come to accept I’ll probably need my medication for the rest of my life. But I’ve also had to accept that I live with a serious, life-threatening disease, and unfortunately, I don’t get to grow out of it.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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My Fight for Colleges to Accommodate Students With Chronic Illness

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At the age of 4, I was diagnosed with severe asthma and attention-deficit/hyperactivity disorder. During sophomore year of high school, I developed multiple allergies out of blue. I became allergic to corn, all tree nuts, and cats to name a few. Junior year became the ultimate battle for my health. In 2008, I could not tolerate most foods and vomited shortly after having a meal. I ate the same frozen TV dinner for two years because I could tolerate it. During this time, I became extremely ill and weighed only 95 pounds.

Most of the doctors had a hard time diagnosing my illness. Eventually, I discovered the source of my illness from a colonoscopy and endoscopy. I had an ongoing allergic reaction that wrecked havoc on my body. With patience and a specialized diet, I started to gain my weight prior to the start of my freshmen year in college for the fall 2010 semester.

My physicians recommended I relocate to Arizona since it is historically known to be therapeutic to asthmatics, so I decided to pursue a bachelor’s degree in aerospace engineering at Arizona State University. During my freshman year, my health significantly improved; however, it did not last. My body adjusted to the new environment and I had multiple relapses. I had two medical withdrawals for a series of asthmatic flares during the fall 2011 semester and 2014 semester. Throughout my undergraduate experience, I juggled a rigorous academic schedule with a medical schedule.

In my undergraduate experience, I had difficulty with a professor of one of my critical courses. Based on my program, I cannot take any future upper division engineering courses without passing this course and it is only offered in the fall semesters. During the beginning of the fall 2013 semester, I was treated for bronchitis at the hospital. I followed up with my professor regarding the current situation. I provided medical documentation and a copy of my homework assignment because I wanted to demonstrate to her good faith and my dedication to the program. I asked for a possible extension on our first homework assignment because I was very ill and did not have a chance to go over the homework during the teaching assistant’s office hours. She replied, “The graders will accept late homework, but with a penalty. You are probably best off to turn in what you have this morning.”

I decided to email the dean of the department about my concern regarding this course. I was allowed an extension; however, this action created a volatile environment. I failed the course and wanted to pursue a grade appeal. During a grade appeal, the student works with the dean designee, who served as a mediator between the professor and myself. However, I followed the dean designee’s advice to not pursue a grade appeal due to the lack of evidence.

In the fall 2014 semester, I took the course for the second time and missed two labs due to illness. Throughout the semester, I emailed my lab TA regularly to ask when it would be convenient for me to make up these labs. In short, my TA was not aware of my professor’s lab policies. As a result, I had to complete my lab reports during finals week so my professor could turn the grades in on time. Although I was given a two-day extension, my other classmates had two weeks to complete each lab report with assistance from the TAs. I did not have assistance from the TAs because they were studying for their finals. Ultimately, I failed my final exams and received a D for the course.

I decided to pursue a grade appeal again because I felt I was treated unfairly and had a better case. The grade appeal process took five months to complete. Although I won the appeal, I was exhausted and emotionally drained. As a result, I had to repeat the course for a third time.

In the fall 2015 semester, my professor decided to add a new policy to her syllabus. I believe this policy served as retaliation to my grade appeal of the lab reports in the previous semester. The policy stated, “Any student with more than one lab absence, regardless of whether the absence is excused or unexcused, will not receive a passing grade in the course.” Despite this new policy, I missed only one lab and passed the course.

It’s scary that I may not graduate due to financial aid regulations. “Satisfactory academic progress” is one criterion used for my financial aid. In order to receive financial aid, you must not exceed the maximum amount of credit hours for your program and have a pace rate above 67 percent. Currently, I am a senior and have five classes left until graduation. Unfortunately, I have exceeded the maximum amount of credit hours due to my medical withdrawals. I have to pursue a SAP appeal and explain my extenuating circumstances for prolonged graduation despite having a good pace rate of 82 percent. This is one of the problems that students with chronic illnesses may run into.

Currently, I am writing a creative non-fiction about college students living with chronic illnesses for my honors project. Throughout my undergraduate experience, there were no support groups on campus for this issue and I wanted to know if there were other students like me. I created a survey to understand public opinion, which I have received over 200 responses. Additionally, I have over 40 students to interview about their unique college experiences.

From my research, it seems most colleges have inadequate policies regarding college students living with chronic illnesses. One of the biggest challenges I found is absence policy. Many students I surveyed said their colleges and universities do not consider a medically documented illness as an excused absence. They rely on the professors to create their own policies for illnesses. On the other hand, most universes allow students to make up their assignments for religious accommodations or university sanctioned events. Unfortunately, my research showed that there are some professors who are not willing to give these students an opportunity to make up their missed assignments. As a result, the student may be forced to withdraw from the course or contact the dean and director of the department to reach a resolution.

Recently, I created a petition on change.org called “Conquer the Chronic Life: A call to action for parents and students.” The petition is designed to raise awareness and create a new bill. This bill would allow a medically documented illness as an excused absence at all colleges and universities, so the student has an opportunity to compete their program.

Additionally, I created the hashtag #CSWCI (college students with chronic illnesses) to create a community, which I hope will become an organization some day. I plan to release a book on May 3, 2016, which is World Asthma Day. I would like future college students to learn from my undergraduate experience.

girl wearing mask standing with rolling backpack
Monique wearing her mask and standing with her backpack on campus.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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