In 2019 I thought I’d keep track of the cost of chronic illness, or at least mine, for a year. Keep in mind this year I was pretty stable AND I’ve gone a whole year without an ER visit and anaphylaxis. Winning!! The last time I went a whole year without an ER visit was when I was in high school. My doctors and I are all thrilled about this.
It’s important to know that I have really good health insurance through my employer. I will fight tooth and nail to keep working so I can keep my insurance. My insurance is generally very good about covering whatever I need. They’ve pushed back on a few things, including iron infusions this year, but nothing that was critical. Unfortunately, this year they changed how they were billing some of my more expensive medications and that has increased my actual out of pocket expenses this year. (I barely squeaked in hitting my out-of-pocket maximum and had it cover my new BiPAP machine. Whew.) In past years, with basically the same treatment plan, I hit it in May. And next year my out-of-pocket maximum is going up by almost $1000. Which means, unless something drastically changes, I won’t hit it next year. It’s hard not to hit my out-of-pocket max–I really love having my insurance cover everything at 100%. 🙂
Medical Bills
Any guesses what my doctors billed out?
$295,000. For a year. To keep me stable. $225,000 was prescriptions. Painful, right?
It was a cheap year too. No procedures or surgeries in 2019. (In 2018 it was about $400,000.)
My actual out of pocket expenses were around $5,000. Some of that was covered thanks to prescription co-pay assistance programs put on by the different drug companies that make my medications. Plus whatever over-the-counter medications or supplies I bought that didn’t go through insurance.
I don’t know what the answer is for health care in the US, but I have no idea how people with chronic illnesses who are under or uninsured are expected to be productive, healthy members of society.
Anyway, back to the numbers for a “normal” year where my doctors consider me stable. Remember, stable means not getting worse. I still regularly have reactions to whatever my body wants to react to.
Other Costs
I thought it would be interesting to keep track of how much medication I took and how much effort I had to put into staying as healthy as I can.
Benadryl is the biggest rescue medicine I use. Whenever I start having a reaction, I take 50mg (2, 25mg pills) of medication. So 318 really reflects 159 doses. Fortunately, we found a new-to-me mast cell stabilizer that is helping (Ketotifen) and since starting it in September I have needed less Benadryl. Which is good, because there is a concern that frequent use of Benadryl can lead to dementia. Goody.
The same counting thing happens with Tylenol. I usually take 2, 500 mg pills, so it’s really 127 doses.
I keep a list of all the medications I’m on or use as needed. We added a few this year. I’m now on 28. Sigh. We’ve tried to take me off some of them. It didn’t work out.
For fun, here’s a photo of all the pill bottles from all my medications this year. This doesn’t include all the immunoglobulin vials from my weekly infusions (that just seemed excessive to keep, hahaha).
73 bottles. 16 bottles were just Zantac. And this photo doesn’t include the 36 syringes of Xolair that I got at my doctor’s office over the year.
In my doctor’s appointments numbers, I include the weekly infusion treatments that I do at home.
It’s exhausting trying to keep everything scheduled and straight in my calendar. I also included the time and energy for phone calls and emails between me and my doctors and the insurance company to be part of the cost of chronic illness. Chronic illness takes so much effort and work to manage. Nothing ever is easy and takes multiple contacts to arrange, approve, finalize, or confirm. It’s a massive energy cost.
But It’s All Worth It
Good news is that all of this resulted in:
0 ER visits
0 hospital stays
0 events of anaphylaxis
0 chest infections
1 minor cold that I got over in a few days
1 week of prednisone (that’s a normal course for a significant reaction)
Those are some excellent stats. It makes all the above-listed cost of chronic illness and the overwhelming amounts of medication and time feel worth it.
Let’s make one thing clear out of the gate: I hate wearing this stupid mask. But because I have a fragrance allergy and sensitivity, and my lungs are so sensitive to air quality–I wear it. The mask helps filter out them out. I currently have a Cambridge mask and it supposed to help filter out germs too. I’ve previously used a Vogmask, but it uses coconut fiber in the filter, and I’m allergic to coconut, so I switched.
My current Cambridge mask. I don’t know why I always make this face when I take a photo while wearing a mask. hahaha
I don’t mind if people ask about it. Maybe if I act confident wearing it, it won’t be such a novelty and people won’t stare as much or notice or care that I’m wearing it. And maybe it will help them be a little more compassionate when they come across someone else wearing one. Or maybe it will help someone else wearing one feel a little less alone. I live in a culture where masks are really weird. I’ve definitely gotten excited when I saw another person on an airplane wearing a mask. I wanted to go talk to him and say, “Buddy, I get it. You are not alone. And neither am I.” Because I am so socially inept and awkward and we were playing sardines in a packed airplane, I didn’t. But I thought it and sent the vibes to him. I’m totally sure he felt it. hahaha.
What I’m Asked the Most
“Are you protecting me or yourself? / Are you contagious?” is probably the most asked question I get. And I just love it when it’s shouted across a store at me (that’s a true story). Uh. I’m protecting myself. Because you, madam, are stinky with your sickly sweet perfume. Gag. Because the world seems to be OBSESSED with making everything fragranced! Why do stores need “signature smells?” Or why do we need scented toilet paper?! Or pumpkin spice latte scented pinecones?!?! I think Oprah gave every store in the US diffusers and essential oils. I’m getting a headache just thinking about it. And yes, essential oils are included in this stinky group. Just because something is “natural” or “organic” doesn’t mean I can’t be allergic to it.
And I do understand the contagious concern. As someone who is on immunosuppressants and has a Primary Immunodeficiency, I also want to avoid sick people–which the mask also helps protect against. But perhaps shouting the question is not the best approach?
What Fragrances and Chemicals do to Me
I realize that I am unusual in how I react. Exposure to scents and chemicals makes me dizzy, give me a headache, make my heart beat weird, can cause GI distress, nausea, make me itchy, my throat can swell, and I swing between too hot and too cold. My eyes get runny and I get congested and anxious, and they impact my breathing. This can be mild or severe. If it’s severe, it can wipe me out for days. It’s so frustrating. Fortunately, I haven’t anaphylacted to a scent or chemical yet, but it’s certainly a possibility.
I’m super sensitive to Volatile Organic Chemicals (VOCs). I have to let furniture and paint air out before I can be around it. My office was completely renovated this year with all new paint, wallpaper (that has adhesive), carpet (that also has adhesive), furniture, plastics, tile (that has adhesive and grout), fabrics. Formaldehyde is one of the VOCs released. Yeah, the one used to embalm people and what your 8th-grade frog was soaked in before you dissected it. Remember that smell? It makes me so, so sick. I couldn’t move in when everyone else did because the VOCs made me so sick. It’s been months and, despite a hard-working air purifier, I still often get headaches by the end of the day being around it all day.
I actually do better with outside air pollution than with inside air pollution. If it’s a clear day and the air is fairly clear, and there’s no smoker nearby. lol.
Scents Affect Healthy People Too
There’s also data to show that there is a longterm negative impact of “scent pollution” on the general public, especially those that have asthma or other breathing difficulties. According to a 2018 National Oceanic and Atmospheric Administration article, “Emissions from volatile chemical products like perfumes, paints and other scented consumer items now rival vehicles as a pollution source in greater Los Angeles, according to a surprising new NOAA-led study.”
The actual study, published in Science, states, “… the use of volatile chemical products (VCPs)—including pesticides, coatings, printing inks, adhesives, cleaning agents, and personal care products—now constitutes half of fossil fuel Volatile Organic Compound (VOCs) emissions in industrialized cities. The high fraction of VCP emissions is consistent with observed urban outdoor and indoor air measurements.”
In 2016, the National Institute of Health published this study, which reported, “Results from this study provide strong evidence that fragranced products can trigger adverse health effects in the general population. The study also indicates that reducing exposure to fragranced products, such as through fragrance-free policies, can provide cost-effective and relatively simple ways to reduce risks and improve air quality and health.”
How I Help Myself
Because there is such a heavy prevalence of fragrances and chemical smells in the world, I tend to avoid going out in public as much as possible now. Life is much easier for me, and I am much less reactive when I can stay in my fragrance-free home. Ordering my groceries online and picking them up in my car has revolutionized my life. And I know there are lots of opinions on Amazon–but it makes this allergy-prone girl’s life so.much.easier!
On an airplane and the guy next to me got a panicked look when he realized he was going to have to sit next to a person wearing a mask. I quickly leaned over and said, “Don’t worry, I’m not contagious.” He visibly relaxed. This happens almost every flight. One perk of the mask was that it covered up my super fat lip from a cold sore.
When I do venture out, I often resort to wearing a mask in public, sometimes at work, and almost always at Church, or in crowds.
Yes, I get a lot of looks. And a lot of avoiding. People work really hard to avoid me. It’s usually really obvious too. It’s a little hurtful sometimes, especially at Church. Sometimes it’s okay because I justify their actions with a thought that they were probably drowning in some Bath and Body Works product that would likely want to torture me, so it’s okay that they took one look at me and hurridly, awkwardly, turned around and walked the other direction.
Here are a few of the experiences I’ve had because of wearing my mask.
Story #1
An older lady and I were in the same fabric aisle at a craft store. I’ll call her “Maude” in this story. I was stopped in the aisle checking my phone, minding my own business, and wearing my mask. Maude came into the aisle and checked a few bolts of fabric then noticed me. I noticed her right away. Older women tend to be heavy-handed with perfume and I usually avoid such individuals. I started moving down the aisle and she stopped me and politely asked if she could ask about my mask. It was so nice of her to ask permission! She seemed nice enough, and I didn’t detect any heavy perfume. And I’m happy to raise awareness. I kindly explained that I have fragrance allergy and sensitivity and the mask helps protect me. I usually keep explanations simple. People usually don’t want to hear the whole story.
“Oh! That sounds awful,” she said. “It can be,” I said, with a smile that she couldn’t really see behind the mask. I started to move on, thinking our exchange was over. “What kind of treatment do you get? Are you on medication?” she asked. Oh dear. Here we go. It felt like she had an agenda.
Now let me pause here and say this: No one needs to disclose their health issues to anyone unless they want to. There is no reason this stranger needed to know my situation, and I did not feel pressured to tell her. But I thought this could be a good moment to raise awareness, and I was feeling gracious. I do believe in raising awareness for MCAS and I have found that sometimes when I have talked about it, I have been able to help someone else find answers they were looking for. Wearing my mask has provided several of these types of opportunities. Perhaps this was another one?
“Yes. My scent sensitivity is actually a symptom of a rare disease that makes me allergic to anything at any time,” I replied. “How does that work?” she asked. I was surprised. Most people don’t care about the details. I briefly explained that a type of immune cell likes to frequently and randomly misbehave. And when it does, I have a reaction. “Oh my! Do you have a doctor?” “Yes, I have a whole team of doctors and they are doing their best to help. I’ve very lucky to have them.” I moved to walk away again, but I had to walk past her, so she kept asking questions. “Have you ever been to a chiropractor? I know an excellent one. He really helped me. I’m sure he could fix your problem.”
And there it was.
She started to pull a small stack of business cards out of her purse. Who carries a stack of a chiropractor’s business cards around? I imagined the chiropractor was probably her son. I resisted rolling my eyes. “Oh, no thank you. I’m very happy with my doctors. It’s a rare disease that is very difficult to treat,” I said, trying to move away. “He’s very good and certainly could help you,” Maude said a little too earnestly. I put up my hand to stop her. “That’s very kind of you, but I don’t need a chiropractor. There is no cure for my condition. But thank you anyway. I hope you have a lovely day!” And I walked away. And avoided her the rest of my time in the store.
A chiropractor, while helpful for some things, is not going to fix a problem with my cells exploding and flooding my body with chemicals. But thanks for playing! Better luck next time!
“Maude” was very nice. I could tell she was trying to be helpful, so I was polite and answered some questions. But she also was trying to give me something I wasn’t asking for, so I politely ended the conversation and walked away.
Story #2
Wearing my “pig” mask. 🙄🙄
This took place in a store on a different day, sometime in the early summer. I walked around a corner and another shopper lady looked up and noticed me and I looked away, but I could see she was watching me out of the corner of my eye. I turned around walked down a different aisle and continued my shopping. She kept showing up (was she following me?). I noticed every time she saw me she would giggle to herself. It was weird. By this point, I wore my mask so much that I kind of forgot that I was wearing it. Finally, she came around a corner and stopped me and said, “Ohhhh, it has air holes!” (she was referring to the vents) and then started laughing out loud. I was so confused.
Just as I was about to walk away, she stopped laughing and finally explained. “I saw you wearing the mask and thought it was a pig snout and that you were wearing it to be funny. I just had to stop you so I could get a look at it and see what you were wearing!” Laughter continued. Apparently I wasn’t in the mood to laugh at the moment because I just stared at her. I finally said, “It helps me breathe.” Why the heck would I be wearing a pig snout mask to a craft store in the summertime?! “Well, it looks like a pig snout!” Cue more laughter. I turned around and walked away. I saw her once more before I left and she giggled to herself.
Way to go lady. Thank you for making me feel more self-conscious about wearing a mask in public. 🙄🙄
The above stories are certainly the two most obnoxious experiences I’ve had. Most people are polite, or at least keep their obnoxious thoughts to themselves and just avoid me.
Story #3
Once in a doctor’s waiting room, a little girl loudly whispered to her mom, while clearly pointing at me, “Mom, why is that lady wearing a thing on her face?” The mom looked up in alarm and glanced at me. I looked up and caught her eye and smiled. I was amused. She quickly shushed her daughter and didn’t answer her and attempted to distract her.
Worried that shushing the curious little girl would make her think that the mask is something to be ashamed of, or think that asking questions was bad, I decided to take the moment to share. (Obviously, I realize that the mom knows her daughter best and has the right to teach her the way she wants, but this was a benign situation and I thought I might be able to help make it a little less awkward. And I think it’s okay for kids to be curious about their world.)
“The mask helps me breathe better,” I explained simply.
After the pig incident, I bought a blue mask. I didn’t want any more pig comments.
“Oh, okay” the little girl smiled and kept playing with her toy. The mom smiled at me. I turned back to my phone to keep reading my book.
A minute or two later, another lady sitting nearby piped up, “Sorry, I just have to ask. How does the mask help?”
I took a minute or two to simply explain my scent allergy and sensitivity and how the mask helps. Hopefully leaving everyone listening aware of the impact their choices to wear perfume or heavily scent their laundry, etc., has on those around them.
How You Can Help
If you want to help people with fragrance allergy and sensitivity…maybe try to stop wearing scented lotions or heavy perfumes? Switch to fragrance-free laundry soap? I use All Free and Clear. It’s cheaper than my old brand and doesn’t make me break out in hives. Win-win!
Be aware that your fragrance choices affect everyone you come in contact with.
I don’t expect the world, or even the people around me, to accommodate my unique set of issues and fragrance allergy and sensitivity (except at work, where they have to). It’s very difficult to do. But awareness and compassion would be greatly appreciated!
