It Ain’t Easy Being Wheezy: Dealing with Doctors and Medications
Originally published at www.clairensaunders.com.
I recently did a Facebook live interview for Healthline with my pulmonologist about living with severe asthma. We talked about the struggles I had getting diagnosed with asthma (which I talk about in one of my past blog posts), identifying and dealing with triggers, taking a wholistic health approach to coping with asthma, finding qualified doctors, dealing with medications, and a host of other things. Today I want to talk a little bit more about two of the things we talked about: (1) Finding qualified doctors and (2) Dealing with medications.
Disclaimer: While I was compensated by Healthline for the Facebook live event, this post is in no way affiliated with Healthline. In fact, I am not affiliated with or sponsored by any of the products or services I mention in this post. Everything I say here are simply my own thoughts and opinions. None of this is medical advise.
Dealing with Doctors
Growing up, I didn’t have asthma or other health issues that required I go to the doctors more than once a year for a general check-up. After my asthma diagnosis, I added a new doctor to my collection, an Allergist/Immunologist. According to the American Academy of Allergy, Asthma, & Immunology, “an Allergist/Immunologist (commonly referred to as an allergist) is a physician specially trained to diagnose, treat and manage allergies, asthma and immunologic disorders including primary immunodeficiency disorders.” I started with an allergist because my husband was already seeing one and he had really helped him improve his asthma. So I made an appointment with my husband’s allergist with the hope that maybe he could help me too.
While I have a working relationship with my allergist, I have since learned that when you have a chronic condition like asthma you have to be a bit pickier when choosing doctors. When it comes to me and my healthcare, I like doctors who are willing to argue with me about my care. I am not a medical professional, but I am a scientist. I stay up to date on the current publications on medications and treatment plans. Sometimes I have more up-to-date information than my doctors, especially the ones that lean towards the medically conservative side. As you can imagine, some doctors find this (and me) incredibly irritating. This irritation is almost always apparent in the first five minutes of the first appointment. Just like you wouldn’t go out on a second date with a person you have no connection or chemistry with, I quickly move on from these appointments and try the next doctor on my list (In the words of Ariana Grande, “Thank you, next.”).
After my most recent asthma flare-up, I had to transfer the treatment of my asthma from my allergist to a pulmonologist. The main reason for this is that it became apparent that controlling my allergies was not enough to control my asthma. The pulmonologists treating me in the hospital all told me I needed to start seeing a pulmonologist and that they wanted me to choose one and make an appointment before I was discharged. For those of you wondering what a pulmonologist does, “[Pulmonologists] diagnose and treat conditions that affect the respiratory system in men and women, as well as children. Pulmonologists have expertise in the following types of respiratory disorders: infectious, structural, inflammatory, neoplastic, & autoimmune.” I got this blurb from Healthline. I had the advantage that I got to meet all of the best pulmonologists in the area during my hospital stint. When it came to picking my new doctor, the choice was obvious.
When I was status asthmaticus (which means really severe asthma attack) in the emergency room, all of the doctors were incredibly kind but there was only one doctor (spoiler alert: it is Dr. Saad in the video above) who took the time to slow down and assure me that I was going to recover from this and then took the time to assure my husband that I was going to be alright. It seems small, but this made all the difference. I’ve been seeing Dr. Saad for several months now, and I can definitely say that it is the most constructive relationship I have had with a medical doctor. We communicate well. He is willing to argue about treatment plans and isn’t afraid to tell me when I’m wrong and don’t have an M.D. after my name. Most importantly, he understands my health goals and is on board to help me achieve these goals.
Dealing with Medications
My grandma is one of those people who hates leaving a doctor’s office empty handed. She thinks that every single time you go to the doctor with a problem, you should leave with a medication solution. I take the complete opposite approach. I really hate when I go to the doctor and they add a new medication like an antacid or controller inhaler. This might be because I am one of those people who is really sensitive to medication. If there is even a <1% chance of a crazy side effect, I seem to get it. This makes it really exciting because a lot of asthma medications already have a host of unwanted (and unsexy) side effects.
The first side effect I want to talk about is oral thrush, which is about as appealing as it sounds. For those of you who do not have the sheer pleasure and delight of knowing what thrush is, oral thrush (also known as oral candidiasis) is an overgrowth of candida fungus in your mouth (you can read more about it here). All of this is a fancy way of saying, it is a yeast infection in your mouth. It tastes bad, smells bad, and can even give you a sore throat. Most asthmatic know about it because it is a side effect of most steroid inhalers. There are ways to prevent it like using a spacer, swishing with a mouthwash after taking your inhaler, or using a tongue scraper. However, even doing all those things doesn’t mean you won’t get thrush.
This past year, after years of making fun of what I called le sexy thrush, I got oral thrush after using the dosage of one of my steroid inhalers. It was awful. When it first happened, I was too embarrassed to go to my doctor. It is not the type of sexy health issue I thought I would have to deal with in my early twenties. I tried swishing with coconut oil (oil pulling), really harsh mouthwash, and scraping it off before I finally had to admit that this was not going to go away without medical attention. When the thrush finally got more unbearable than the hit to my pride, I went to my doctor and he prescribed me a nasty tasting mouthwash called Nystatin that I had to swish and swallow. Needless to say, it was truly the time of my life minus the Swayze and the dirty dancing in upstate New York.
More recently, my asthma has been bad enough where I have to be on a daily dose of prednisone on top of my daily controller medications. Hopefully, the immunotherapy injections will allow me to reduce the amount of prednisone I need. Prednisone has so many fun side effects. One of the big side effects is weight gain. Prednisone makes you feel like you are hungry all the time and unless you are closely monitoring your diet, it can be incredibly easy to put on weight. I use MyFitnessPal to track my food intake on a day-to-day basis, and I find it incredibly helpful when I am on steroids. By tracking my calories, I force myself to make smarter choices about the foods I am eating, and I have a much easier time distinguishing the ‘fake’ hunger I get on prednisone from actual hunger. Another thing tracking what I am eating does it helps limit the sodium I ingest. Prednisone makes you retain fluid. I usually get several pounds of fluid retention in each my legs. I try to stick to low sodium foods, but the existence of In-N-Out makes that challenging. Overall, I try to go easier on myself when I am on prednisone. I know that my weight will fluctuate, so I only weigh myself once a week when I’m on prednisone, with the knowledge that if I eat healthy most of the weight is probably water weight.
Prednisone always does a number on my skin. When on prednisone, my skin will undoubtably be an irritated pimply mess. I always overdo it with the face masks, acne scrubs, and spot treatments. While I can talk about my skin routine at a later time, I really think you have to find what works for you and consider seeing a dermatologist if the acne gets too out of control. The other side effect that I see on my face from prednisone is the dreaded moon face. There is absolutely nothing I have found that I can do about this one other than to wear it with pride. Is my face rounder? Yeah. Is breathing worth it? Absolutely.
The very last prednisone side effect that I want to talk about is the insomnia and mood swings. When I am on prednisone, I usually get pretty bad insomnia. For this, I try to do things like limit my screen time before bed, take a bubble bath while binge watching Grey’s Anatomy, and meditating before bed. Honestly, I don’t know if any of it actually makes it easier to sleep but I do know that these items also function as self-care and help my overall sanity in the end. This brings me to mood swings. I find I have much less patience while on prednisone and get stressed out a lot easier. To keep myself sane, I practice self care. I feel the need to say here that this will not work for everyone if the mood swings and insomnia are severe. In fact, they might require the attention and treatment from a mental health specialist. For me, I keep my doctors in the loop. They check in to make sure I am not only breathing well but that I feel mentally sound. I am more than just a set of airways after all.
To bring it all back together, it is really important to have good doctors that you communicate well with to manage your health and medications. I have some really fantastic doctors, but I wouldn’t be able to manage my asthma as well as I do without some preparation and organization on my end. I’ll leave you with a list of 5 things I do to manage the conversations I have with my doctors and tools I use to manage my health and medications (again this is NOT MEDICAL ADVICE).
- I make a list of questions and points of conversation to talk about with my doctor so that every appointment is productive.
- I take my medications at the same time each day (I use an app called Medisafe).
- I use a bunch of other apps like Apple Health, MyFitnessPal, and HealthMate to track other stats like my weight, peak flow, nutrition to show to my doctors if we are trying to solve a problem.
- I chose my doctors not only for their qualifications, but for how well I get along with them.
- I take care of myself by practicing self care, taking my medications properly, exercising, and advocating for my own health.
It ain’t easy being wheezy, so it helps to have good doctors and medications to make it easier.