Category: Chronically Awesome

The Epic Tale of Immunoglobulin Therapy

Immunoglobulin Therapy
~ Megan

Today (Leap Day!) is Rare Disease Day so I thought I’d share my experiences having a Primary Immunodeficiency and being on immunoglobulin therapy. Two years ago I started weekly immunoglobulin therapy. It’s been quite the journey.

Getting a Diagnosis

When I was diagnosed with MCAS in the Fall of 2015, one of the things my immunologist and I discussed was my frequency of chest colds. Blood work looking for immunodeficiencies was normal (of course they were, sigh). Over the next few years, I continued to get chest infections that would trigger mast cell reactions. After several rounds of immunoglobulin labs with normal results (ugh), my immunologist wanted to try another round of labs that involved getting vaccinated. The lab tested my levels of response before and six weeks after the pneumococcal vaccine. I had little response after. And I anaphylacted to the vaccine. Ah, so not only is my body “blind” to pneumococcal, but I’m allergic to it. Of course I am. So no more pneumococcal vaccines for me. But I definitely recommend and encourage other people to get vaccinated, if you can!

We *finally* found the answer! I have Specific Antibody Deficiency (“SAD”) and my body doesn’t see streptococcus/pneumococcal bacteria. Basically I get chest colds almost anytime anyone sneezes near me. Getting the diagnosis was like another piece of my medical puzzle clicked into place. And yes, my family has teased me plenty for having a SAD diagnosis on top of everything else. Hahaha

Some months before, my doctor and I were discussing alternative treatment ideas. I felt like I was not getting ahead of my MCAS reactions. I had been doing some research and had heard some people had good luck with IV immunoglobulin (IVIG) therapy, so I brought it up to my doctor. He hedged a bit and said that he wasn’t aware of any studies that showed IVIG as a treatment for MCAS. He didn’t think my insurance would cover it, since it wasn’t an FDA approved treatment, and he warned it was expensive.

Getting Started

With the new diagnosis of SAD, I was now eligible for immunoglobulin therapy to be covered by my insurance (not all insurances cover SAD). Whew. 

Treatment for immunodeficiencies is immunoglobulin therapy–which is derived from human plasma–which is donated, like blood donations. Plasma is processed and filtered to get just the immunoglobulin. Then 10,000 or more donations are combined together in order to get adequate immunoglobulin coverage. IVIG is typically administered via an IV once a month. Basically this treatment is supplementing and boosting my own body’s immune response. It’s covering the gaps. You can learn more about it here. There has been a national shortage and some people haven’t been able to get their infusions (I’ve been lucky). Please donate, or encourage others to donate!

My doctor and I discussed IVIG options and he felt that monthly IVIG would be pushing my body too much and not protect my immune system enough before the next dose, so we decided weekly subcutaneous (SCIG) infusions would be best. They can be done at home and the immunoglobulin is injected with small needles under the skin. They generally are tolerated better and are easier to manage. Both of those sound good to me! 

My arm wrapped during my first immunoglobulin infusion
The kind nurse wrapped the needles up so we didn’t have to use Tegaderm adhesive during my first infusion. I later learned how to avoid reactions from the adhesive by using Cavilon wipes.

So we gave it a try. The drug company provided a 4-week trial while insurance approval was pending. I started the Cuvitru trial within a week of diagnosis. The company made arrangements for a delightful nurse to come and teach me how to do the infusions.

My insurance approved immunoglobulin therapy. Yay! But they wouldn’t approve Cuvitru because it wasn’t on the formulary. So I was going to have to switch to Hizentra–a comparable immunoglobulin with preservatives, something we were concerned I would react to. Ugh, but okay.

Then I tried to make arrangements for a nurse, the medication, and the supplies–all of which are necessary. (The nurse was necessary till I felt comfortable doing the infusions on my own. Now I only use them occasionally when I need to do them in my back.) Well, the only “approved” pharmacy that the insurance would approve to distribute the immunoglobulin wouldn’t provide the nurse or the supplies. What?! And the insurance wouldn’t approve me to use the infusion clinics that were on the in-network list?! WHAT?! At least 65 phone calls later (not exaggerating, I counted), I was finally able to get an exception approved to use an infusion clinic on the approved list. I hope you hear my eyes rolling through the computer. It was painful and so frustrating. BUT, it got taken care of in time that I didn’t miss a weekly dose. Whew. 

When I got my first statement from the pharmacy I was shocked. It was just under $20,000. For ONE MONTH of 25 grams of Hizentra immunoglobulin and supplies. The supplies were only $200ish. Fortunately, with my insurance coverage and then the copay assistance coverage from the pharmaceutical company, I only pay a tiny portion of that. 

I just got my next summary statement from my pharmacy. They forgot to bill me for supplies, I think. But my medication is $4,430 a week. That’s $221.50 per gram. Just for perspective, the price of gold per gram (as of this post) is $51.07. Yeahhhh. There’s a reason immunoglobulin is nicknamed “liquid gold.”

My latest immunoglobulin and supplies statement
The latest statement from my specialty pharmacy. Insane, right?!

Treatment

My leg with an infusion going
My leg with the infusion set up and going. This time it was 6 sites. If sites ever fail or started leaking, I can cap them off, but that means the infusion will take longer. I try really hard not to have that happen.

Right away I noticed I was not tolerating the Hizentra as well, but I wasn’t having severe reactions so I had to stick with it. Thank you benadryl (new band name; I call it!). Because I was doing infusions by myself, I could only do them in my abdomen or thighs. It became quickly apparent that my infusions are way slower than they should be according to some magical math equations. We still don’t know why what should be a 2-hour infusion takes almost 5 hours. So we tried adding more needle sites to try to speed it up. So at one point, I was doing 7 sites a week. My abdomen wasn’t having it. Every time I did it there, I would end up with horrible bruises, swelling, and itching that would last several weeks. I finally just stopped doing it in my abdomen. For over a year, I did infusions alternating between each thigh and changing the sites’ locations. 

Infusion Reactions
My leg after a particularly rough infusion. Site reactions are normal, but this was was coupled with other MCAS symptoms too.

During all of this, my pharmacist was fantastic. He has worked so hard trying to find ways to make this work for me. Trying different needle lengths (switching between 9mm and 12mm) and flow rates. Trying varying numbers of needle sites and locations on my body.  My immunologist over time also lowered my dose a few times to see if that would help too. But over time, the infusions in my legs became more and more painful to the point that my thighs constantly ached all the time.

I told my immunologist my concerns and he thought it might be time to switch medications to Cuvitru (the preferred medication). But remember how the year before it wasn’t on the formulary for my insurance? I reminded my doctor. “Formularies change. I think we should at least ask. Sometimes they’ll approve it if they know you aren’t tolerating the approved one.” 

Lo and behold, they did approve it! And they covered it! (That was also a big concern.) So I switched and it’s been much better. I have also reduced the number of sites down to four and just deal with the infusion taking 5 hours every Saturday evening. These together have helped and my legs only sometimes hurt now. I think what has happened to my legs, especially my left, is that the weekly puncturing with so many needles has caused scar tissue to build up. If I pick the wrong spot, it can be really painful to try to insert the little needle. 

Let me just tell you–there’s helpful introductory video that one of the drug companies created that shows how to do an infusion. But it also cheesily shows a man strolling down the street all casually walking his dog like it ain’t no thing to be pumping medicine into his abdomen. “You can do anything while you do infusions!” Ha! Yeah right. I feel yucky during and after these infusions. And generally do not feel up to strolling down the street. I have run some quick errands, but try not to do so. DoorDash is the best on Saturday nights. 🙂 And then I sleep for 10-14 hours after. It’s exhausting.

  • My pump, pump bag (underneath the pump), thermometer, and a little storage container full of odds and ends like alcohol wipes, cavilon wipes, bandages, gloves, extra supplies, etc. The drug company sent me a free laptop type bag to store everything in. Makes it easy to travel with too! And yes, I’ve flown with my medication and supplies–it wasn’t a problem!
  • A month worth of medication to be stored in my fridge.
  • A month worth of supplies. I also have tons of extra supplies on hand because sometimes something is missing or I accidentally contaminate something.
  • Kitting my supplies into weekly bags so each week I have everything I need for that infusion. Makes things a lot easier!

Two Years Later…

My current regimen is 20g of Cuvitru weekly. The goal has been to find the lowest level of immunoglobulin I need to stay healthy. With the severe cold I got this winter, I think we might have hit my lower threshold. Bummer. I was hoping to get to a lower dose (lower dose = lower cost). Oh well. 

But overall, the immunoglobulin therapy has helped so much.  I haven’t gotten sick nearly as much, or as severely. Getting sick was a big trigger for me on several levels–so eliminating that has kept me out of the hospital and anaphylaxis free for 18 months. A new record! As hard as this treatment can be, it’s been worth it.  

Unfortunately, right now there is no alternative way to treat primary immunodeficiency–which is why additional awareness or additional research is needed. You can support patients like me by donating plasma (sometimes you can get paid for it!) or donating to organizations like the Immune Deficiency Foundation.

The Cost of Chronic Illness

~ Megan

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. 

Time and Medication Costs of Chronic Illness

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).

pills are a cost of chronic illness
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.

Mast Cell Disease Friendly Gift Suggestions

Gift Suggestions for Mast Cell Patients
~ Megan

Looking for gift suggestions for a friend or family member with a Mast Cell disease (your “Mastie”)? Giving and receiving gifts for a Mast Cell patient can be tricky due to everyone’s very individual trigger list. I thought I would try to put together a list of suggestions if you are looking to give a gift to a Mastie. Of course, best practice is to ask your friend or family member what they would like. But if you need some ideas, here you go!

These ideas came from the mast cell disease community and me. Please remember that every person has their own set of triggers, so some of these items may not work for every person. Please ask your Mastie friend before purchasing something if you aren’t absolutely sure it’s safe. Please include a receipt so it can be returned, if needed. Because many of us are so sensitive, we have to use very expensive items to be safe. I know I would appreciate receiving some as a gift.

Gift Suggestions

Soft Fuzzy Blankets! Can someone have too many? I think not. 🙂

Socks–again, can never have too many. Also these socks have zebras! Always a win with a mastie! (It’s a mascot for rare diseases.) Caution: some socks can contain elastic that can irritate some people’s skin.

Soft clothing. Cotton or bamboo can be a great natural option. Skin sensitivity is a big problem. I adore soft clothing!

Benadryl. Children’s clear liquid diphenhydramine is often what people use. I’m lucky in that I don’t have a problem with dyes at this point, so regular benadryl/diphenhydramine (in bulk!) works great for me.

Pill Organizers. Keeping track of medication is difficult. Especially when you take 20 pills a day. So having a large pill organizer helps immensely. And it’s nice to only sort pills for two weeks since I only take pills twice a day. If you take pills 4 times a day, this large pill organizer could be really useful. I also use a smaller week pill organizer to keep rescue meds easily accessible. And it’s convenient for traveling too!

Cold Storage Pack. Epi-pens and other medications used by Masties often need to be kept in cool storage, especially when living or traveling in warmer climates. 

Medicine/First Aid Bag. I love my first aid bag that I keep in my backpack-purse. It holds my EpiPens (I don’t live in a hot climate, so I’m not worried about temperature exposure), Benadryl and other rescue meds that I like to have on hand. My backpack-purse and the medicine/first aid bag each also have one of these “Medicine Inside” zipper pulls. 

Tissues. I’m personally partial to Puffs plus lotion. I have a lot of congestion and these are heaven-sent. 🙂 Not everyone will be able to tolerate this kind, so please check with your Mastie what their preference is.

Audiobook gift cards or subscriptions like Audible. Or help them get set up with their local library’s Libby/Overdrive system to get audiobooks for free.

Reusable Water Bottles or Mugs. Ask if metal or plastic would be better. Some Masties do better with one or the other. 

A Go-bag. A small bag or backpack to have on hand pre-packed with hospital essentials to make it easier to have everything a patient needs at the hospital. Maybe include some of the other things on this list?

Extra long phone chargers. You might need to check the kind of phone they have so you can get the right kind of plug. Most newer phones use the USB-C port now. These are practically a necessity when stuck in the hospital!

Magazine Subscription. Do they have a hobby that has a magazine? 

Air Purifier & Filters. I have this one at work and I like it. I want this one for home. If your local Mastie has an air purifier, consider purchasing replacement filters for them.

Magic Masto Lotion. Safe lotion (I use CeraVe–but check with your Mastie for their favorite) GET UNSCENTED! Cromolyn Sodium (available over the counter as an eye drop). Recipe found here.

Hot packs or Cold packs (or these that double as both). Many of us have difficulties regulating our body temperatures (super fun!) so having something to help externally is a blessing!

Over the Counter Medications. (USE CAUTION) I use a lot of over the counter medications. And at the higher than normal doses I take them, they get expensive. Consider a gift card to your friend’s favorite pharmacy (trust me, they have one 🙂 ) or buying a few bottles. If you want to buy the specific bottles, this may be difficult. Many patients require very specific formulations (no dyes, specific fillers, specific brands). Please be sure you can buy the exact kind they use (no substitutions) and include a receipt so they can return it if it doesn’t work out.

Bathroom Items:

Calendars or planners. Keeping track of medications, symptoms, and doctors’ appointments is tricky. It’s helpful to have someplace to put it all.

Funny gifts to make them smile. The smiles are needed for the hard days.

Lap activities: books or coloring books (I love this coloring book) with easy-grip pencils.

Amazon Prime. Because of my scent sensitivity, it’s hard for me to shop in public. Amazon Prime is ahhhmazing. Free shipping, usually two days, but sometimes same-day or next-day shipping is available! And it includes TV, movies, and music, and a lot of other things. 

Streaming Subscriptions (Amazon Prime, Netflix, Hulu, Disney Plus) Chronically ill people spend a lot of time recovering. This often means a lot of time in front of the TV. Consider helping them by giving them some variety, or letting them catch up on shows from their childhood (hello Disney Plus! hahaha)

Apple or Google Play Gift cards. We like to keep ourselves entertained while we’re not feeling well.

Maintenance Services. Yard, cleaning, laundry services would be amazing. These activities often trigger reactions for so they are difficult to do. It would be great to have someone help out.

gift suggestion of time
Easy gift suggestion: Your Time! Photo by freestocks.org on Unsplash

Time with You at their place on their terms, no questions asked. How about a night in with a movie, safe snacks, or a favorite board/card game? With no pressure to talk, or to talk all they want. And if your Mastie friend is isolating themselves due to a reaction, it’s okay. How about a video chat?

Ask your friend to start a wishlist on Amazon or Pinterest so you can know exactly what to get them. Let’s make life easier for everyone! 🙂

WHAT NOT TO GET

Anything scented

  • No candles, essential oils, diffusers
  • Lotions
  • Soaps
  • Perfume
  • Bath bombs

Plants–unless you know they are okay. Personally I’m okay (and slightly obsessed) with them. hahaha

Food. Many people have a long list of ingredients they cannot or should not eat. To make things easier for us, please don’t drop off goodies. While the thought is nice, I’ll end up tossing it out. For some people, exposure to an ingredient is enough to trigger anaphylaxis. Let’s not make this a scary holiday. 

From personal experience, if I don’t know the person very well or they haven’t talked to me prior about what to cook for me, I won’t eat the treats. The list of people that I let cook for me is very, very short. 98% of the time I decline treats, even when “guaranteed” they are safe. I can usually guarantee they are probably not safe treats. Most people cannot handle the depth of ingredient checking I have to do. And that’s okay. I don’t expect them to. 

Let’s make this easier for everyone: Don’t bring treats!

Here are some suggestions of what to give instead:

  • Whole Foods gift card (or other local health food store)
  • Trader Joe’s gift card
  • Sprouts gift card
  • Packaged treats your friend has specifically identified as safe for them to eat (they may not have any). If they give you one, please buy the exact brand and kind they identify. Many are similar, but those differences can cause huge problems. Even differences between sizes in the same flavor can sometimes have different ingredients (yeah, I don’t understand that either).

Want to Help Support a Mast Cell Patient? 

Consider supporting their side hustle this holiday season. Many of us have little side hustles to help us pay our medical bills (always so.many.bills). 

Donations to Charities that Support Patients:

The Mastocytosis Foundation and Super T’s Mast Cell Foundation are two I personally support. 

Did you know you can also use smile.amazon.com to support a charity at no cost to you? By purchasing through smile.amazon.com and selecting a charity (both the above are options, plus many others), you can have Amazon donate a small portion of your purchase price to the charity. And it costs you nothing! Winning!

Hope these gift suggestions helps you! 

Did I miss something? Do you want your etsy shop/small business listed in this article? Send me an email with your website info at luckystarsstudio517 at gmail dot com.

xoxo

The Mask: Life with Fragrance Allergy and Sensitivity

A girl wearing a yellow mask to protect against fragrance allergy and sensitivity
~ Megan

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.

a girl wearing black glasses and a blue face mask that covers her nose and mouth to protect against fragrance allergy and sensitivity
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!

a girl with a blue face mask hanging off her ear. She is making a funny face with her lips.
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
a girl wearing black glasses and a yellow face mask that covers her nose and mouth
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.

a girl wearing black glasses and a blue face mask that covers her nose and mouth
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!

Life on the Edge

Person standing on the edge of a mountain cliff. The sun is sitting on the horizon just below the mountain
~ Megan
Photo taken in Yosemite National Park ♥ Photo by Leio McLaren (leiomclaren) on Unsplash

I live life on the edge.

The edge of an allergic reaction.

The edge of medical science.

The edge of an unknown, looming, black abyss.

The edge of fear.

The edge of faith.

I’m not an “edge” type of girl. I am terrified of falling. Heights have always scared me. I have always clung to the known, the safe, the solid.

I don’t have that luxury anymore.

I have been aggressively attacking my rare diseases since I was diagnosed in 2015. Each day, each doctor’s appointment, I’ve been inching closer to the edge, knowing at some point we were going to max out my options. At a recent appointment with one of my specialists, we were discussing next steps.

Reality Check

“We don’t have a lot left we can do, Megan. There’s so much we don’t know about how your condition works or how to get it to stop reacting to everything. It’s just so complicated,” my wonderful GI doctor said. “You live on the cutting edge of medicine and science.”

I sighed. I know.

During my entire childhood through college, I knew, KNEW, I was going to be a scientist. I knew that I wanted to live on the exciting, cutting edge of medicine and science–as a researcher. Working on cures for devastating conditions like Alzheimer’s disease.

Not as a patient. It never even once crossed my mind. And it’s definitely not exciting on this end of the equation. 

But then God had other plans. He knew. Knew that I was going to need that basic understanding of biology because I was going to be the one with a devastating, ill-understood condition. It was heartbreaking when I didn’t get jobs in research and ended up working as a paralegal. As much as I have come to enjoy law (which surprised me), I still miss molecular biology.  Until three years ago, all I used my degree for was to successfully keep my office plants alive. Now the reason I studied it for so long are obvious and I have been so grateful for that basic knowledge.

A week after the conversation with my GI doctor, I met with my immunologist, also a wonderful doctor (I’ve been so blessed). “I think we’re pretty much capped out on you, Megan. You’re already on all max doses of all the medications. I don’t have any more treatment options unless we decide to do chemotherapy. And I don’t think the side effects are worth it at this point,” he said. “I know you’ve still got symptoms, but you’re stable now. We’re going to have to wait until more treatment options are available, or your condition changes.”

I sighed again. I know. And I agreed.

Stable doesn’t mean cured, fixed, or better. It means I’m not getting catastrophically worse at the moment. I am certainly better than I was three years ago. But it means I still am sick. Still have severe allergic reactions. Still have the risk of anaphylaxis at any moment. Still might end up in the hospital. Still might get worse. Still might need chemo. Still might die from this.

I’m at the point where I’m tired of fighting my body and need a break anyway. It’s been a hard year so far. Adding in weekly immunoglobulin therapy has been more difficult than I expected. I’m exhausted–physically and emotionally.

I told both of the doctors this at the appointments. They both nodded in support and encouraged me to take a break from pushing my body and my spirit. “It’s okay to take a break. You’ve worked really hard at this for a long time. Take some time to just live. Let’s see you in six months and we’ll see where you’re at,” they both said.

I sighed. Okay.

I was afraid this day was going to come. I’ve spent three years fighting so hard to improve. Once I knew what was wrong, I had something to fight against. And I’m a good fighter. I was absolutely sure I could get better (even when my doctor wasn’t sure). And I have gotten better. I’ve improved significantly. My doctors remind me of this at every appointment. But, improvement does not equal “fixed.” They remind me of that too.

This time I hear Reality slapping and screaming at me, “There is no cure for this. You’ll be like this for the rest of your life.”

It is crushing.

I already knew it, of course, intellectually anyway. I knew it the day I got my diagnosis three years ago, but it was still devastating to hear it now, again. To feel it. To feel the thick, black emptiness below me slowly reaching for my dangling feet, ready to suck me in at any moment.

I take a deep breath. I can do this. I can keep going. I can make it six more months.

I mark time by doctor’s appointments now. Every six months. Monthly shots. Weekly infusions. Daily pills. Living in six-month windows. I’m not able to see beyond that. And some days, barely able to see tomorrow. I worry this is how the rest of my life will be like.

Reactions

Every moment I live with a fear that I’m going to have an allergic reaction. I recently walked into a lovely shop and before I even got to the entrance, I could smell a sweet perfume emanating from the store. It was too strong for me. I wore my mask, hoping it would be enough. I quickly went in and made my purchase and left the store, practically holding my breath the whole time. Praying I would not have a reaction. I’ve learned not all prayers are answered the way we want. (Also, online shopping is my favorite. No smelly stores!)

By the time I went to my next stop, one block away, I could tell I was having a reaction. A headache exploded in my skull. My GI tract was suddenly very angry at me. I was nauseous, congested, dizzy, achy, exhausted, and anxious. The bright sunlight triggered hives and diffuse itchiness. I scrambled to find my nausea medication which helps, but it’s not a cure-all. I needed benadryl. And sleep. Lots of it. But I still had a play to go to that afternoon, and a five-hour infusion to do after that. I didn’t want a reaction to stop me from living my life. I repeated my mantra to myself, “Just breathe. Slow, deep breath. Just breathe. You’ll be okay.”

I made it to the play and took some Tylenol, and hoped no one sitting near me would be wearing something scented. The play was enjoyable and I wore my mask the whole time. Naturally, I got weird looks from most people around me. I smiled and winked at the kids who stared. Hopefully communicating that I wasn’t a scary monster. Most smiled back.

I slept for the rest of the weekend. Just two stores and a play were too much for my broken body that day. Some days I can do more, some days I’m only able to do the bare minimum to survive.

Life on the Edge of the Cliff

I cling desperately to edge of my cliff, feet dangling precariously above a vast, inky black sea of nothing. Fingers curled tightly into any crevasse that may give me hold so I don’t slip. The rest of my life spread out in front of me. A giant black void of nothing. It’s all I’ve seen the past few years. Not even the glimmer of a faint star in the sky. My wonderful, brilliant doctors don’t know how to help me anymore. I don’t know how to help me anymore. I don’t know what my future holds. Staring at the empty black is terrifying. I squeeze my eyes tightly against the black so it doesn’t sink into my soul. 

But sometimes I bravely open my eyes wide and stare, searching, reaching for a light in the mist. And sometimes I glimpse it, one step forward. One step enough for me.

I am not hopeless.

Attitude is Everything

A friend recently told me she can’t believe I have such a good attitude with all of this going on. I shrugged my shoulders, not sure how to respond. I don’t know that I have a great attitude about it, but complaining doesn’t help anyone. Just makes everyone around me miserable too. (Though I still do complain sometimes!) Laughing at myself is much more entertaining anyway.

What else can I do? I might sit on a cliff, dangling above an unknown future…but doesn’t everyone? No one knows their future. Everyone has struggles of some kind. Everyone is fighting unseen battles. Mine are of the weird, expensive, medical variety. Some might have family or financial struggles. Others may have difficulties at work. You might have something completely different. But my “rare” struggles don’t make me more special, or more admirable, just because they are unique.

We are all here on Earth to help and lift each other up during our struggles. Heaven knows it’s difficult, maybe even seemingly impossible some days. But I can, at least, smile at someone today. Even if that someone is just myself staring back in the mirror.

I have hope in better days yet to come.

I have hope in seeing through the black fog to the sun rising above the beautiful valley below.

I have hope that from my perspective on the edge that I’ll be able to see how far how I’ve come and the wonderful, beautiful future I have going forward.

I have hope in a bright, happy future when all pain and suffering no longer exist.

I have faith I’ll be there to enjoy that feeling.

I’ll close my eyes and bask in the happy, warm sunlight of that moment.

_____

[A version of this article was published on The Mighty, a website for people with chronic illnesses, in February 2019. It was originally written in July 2018.]