I got normal lab results again recently. It was just a CBC with differential. Nothing big. But still another poke. I’m used to labs by now. I can tell the phlebotomist exactly where to poke me for the best access (the back of my hands, towards the outside). “And when it likely fails, don’t worry, new friend, it’s me, not you,” I say every time. They inevitably laugh and say they’ll be able to get it because the vein looks excellent. Their naivety is adorable. I smile tightly. “Yep. it sure does.” And sigh on the inside. I have terrible veins that don’t like to cooperate. Drawing blood is much easier than setting an IV, though. IVs often take multiple attempts and multiple nurses. This time, I was lucky, and the phlebotomist got me on the first poke. I still have a nice hematoma, though.
The results came back the next day. I am the picture of health according to them.
Ha. Ha haha hahahahahahahahaha. Excuse me while I try not to have an asthma attack from laughing so hard.
Clearly, I am not.
But yet, that is what my labs almost always say—normal results. All my tested biomarker levels are in healthy ranges. Well, that’s just great. I’m glad they are. Really, I am. It means my medication isn’t damaging my organs (yet), and my immune system is managing to be okay. But that doesn’t help us measure what is happening in my body.
The labs, of course, provided no real answers—except what was not wrong with me. This is helpful to an extent—don’t get me wrong—but ruling things out is almost as helpful—but they are not the actual answers.
Labs
The problem with my condition is that very few labs can actually measure what is going on. And those few labs are notoriously tricky to do. The chemicals measured are extraordinarily fickle and break down very quickly. Sample collection requires collecting urine in a particular container for 24 hours and keeping it chilled the entire time. The samples have to be constantly refrigerated, even during transportation. Even 5 minutes outside of a cooler can ruin the 24 hours of work (and it is work!). There’s a bit of art in keeping the samples chilled. Patient groups frequently pass these tips on to the “newbies.”
Few laboratories are equipped to perform the labs, and fewer are knowledgeable enough to keep everything adequately chilled. The margin for error for these tests is massive, and they are unreliable. A negative result doesn’t rule out anything. It probably means someone messed up the test. Even when everything is supposedly done properly, results can be inconclusive or normal. It’s incredibly frustrating—all that work and expense for naught. Many patients try these labs repeatedly, trying to get the elusive positive result.
When I was first diagnosed in 2015, I had more labs that came back unhelpful. I did everything right, but I still didn’t get ideal lab results that conclusively proved my diagnosis. Fortunately, my doctor felt (and others have since agreed) that the labs and my symptoms were enough to give me my diagnosis. I am so, so grateful. Not every patient is so lucky.
When I got sick at age 14, I learned the anguish of labs that don’t provide answers. I remember one phlebotomy session where 18 large vials of blood were taken. Then, I had a bleeding time test. They were trying to figure out if I had a clotting disorder, among many other things, I’m sure. I remember thinking that it was ironic they were taking so much blood when we had just had a conversation with the doctor about whether I needed a blood transfusion because of how little blood I had. I do have a blood disorder–they were right about that, but the fickle labs for it wouldn’t be invented for another 10+ years. My condition wouldn’t even have a name for another 10 years. It was impossible to find then.
Countless labs have followed in the years since. More normal or inconclusive lab results. Maybe this time will be when my body finally objectively proves something is wrong? No, not this time.
But I am sick! I yell at the screen of normal numbers. Why won’t you show that!? Something is wrong. Please show the doctors I am not making this up! Please tell them I am not crazy! For once. just tell us something helpful. Please!
Objective vs. Subjective Findings
Doctors like to have something to show them what’s wrong, something to justify the symptoms. They like to measure and count, which allows them to mark improvement or digression. When labs don’t support the patient’s symptoms, doctors are asked to rely on subjective findings. Subjective findings are the bane of our lives. Don’t even get me started on the pain scale.
One specialist and I spent months experimenting, testing, endoscopies, and biopsies, trying to find a good marker for me so we could see if any treatments were helping. All we ended up doing was almost killing me when we found out I was super allergic to the multiple feeding tube formulas I was briefly on. That was SUPER helpful to know, so I count the whole thing as a win (no other circumstances would have given us the allergy info). But my doctor still, years later, feels horrible about making me so sick–and that it still didn’t even give us an accurate, objective way to measure anything objectively on me.
I’ve had doctors that won’t give weight to subjective findings. If there’s nothing clinically wrong, then there’s nothing subjectively wrong–the patient is either making them up or exaggerating them. I worry that the ordering doctor will review the results whenever I get a normal lab result and say, “Ah, just as I thought. Megan, you’re fine. You’re just malingering. You need to lose weight and exercise. Here’s a psych referral.” Or they might even note in my chart the terrifying label of “Munchausen’s.” I think this is something most, if not all, patients with invisible diseases are terrified of. Especially those with the really invisible diseases–the conditions invisible to even lab tests.
Doing My Part in the Process
Fortunately (?) I do have a few physical symptoms. Anaphylaxis is obviously a clear, objective finding. But even my hives are mostly invisible! How the heck am I supposed to show doctors I have hives when they are under my skin? Before I had my significant symptoms, I had years of a lot of little problems with very few supporting clinical findings.
I’m so incredibly blessed to have doctors who believe me. They keep looking and running test after test, trying to find something they can measure. And when we don’t see anything, they still listen, and they still believe me and my symptoms and still keep treating me. I’ve worked hard to be a trustworthy patient, so what I describe is accurate and not exaggerated. I keep notes and journal my health so I can be a reliable witness to the failings of my body. I work hard to be an active and educated participant in my health journey. If I am not, who else will be?
I know how often doctors cannot trust patients. As Dr. House so often said, “Patients lie.” I earnestly seek to be the patient who does not.
How else will the doctors believe me when it’s my labs that are the ones lying?
I’m currently in my 18th hour of an ER visit. Hour 24 without food, and hour 30 without sleep. And the right side of my abdomen is currently being stabbed with a pitchfork every time I move or breathe, and every other time I blink. Actually, they gave me pain meds a bit ago again so it’s down from a 9/10 on the practically meaningless pain scale to a manageable (and my pretty standard operating condition level) 5. So I’ve got that going. I also have iv benadryl (and it feeeeellllsss soooo goooood!) and my safe steroids on board too. So if this is incoherent, we’ll blame it on that, m’kay?
Disclaimers 🙂
So first a couple of disclaimers before telling this story:
1) I know I’m incredibly blessed and privileged to have access to great health insurance and a world-class university hospital that is willing to recognize my many, weird diagnoses and treat me. So many with my conditions go without this and it’s absolutely heartbreaking.
2) I’ve had some rough ER visits that leave me worse off than when I walked in, so it makes me quite gun-shy about going into the ER. I’ve skipped going in because the stress of having to defend my needs sometimes outweighs what is potentially emergency room worthy. I’ve learned to (mostly) diplomatically advocate what I know my body needs and respect the doctor and their experience, and who are likely inexperienced with my constellation of conditions. It’s a tough needle to thread. Sometimes doctors don’t respond well to me defending what I need or trying to explain my prior experiences.
I’ve talked before about what getting my bingo card (my current favorite analogy) collection of unusual and rare conditions looks like. But other than those fun adventures, I haven’t had many other “normal” issues. If you ignore all my problems, I’m like *totally* healthy. Haaa.
An ER Visit Personal Record is Broken
But yesterday, I had a normal person health problem that ended my 4.5-year no E.R. visit streak. (Can I get a round of applause for that streak?! It’s dang impressive for me!) Mid-afternoon I started having severe pain on the right side of my abdomen. It was low and it was terrible. I tried my usual bag of tricks thinking it was related to my usual suspects. But instead, I felt worse and continued to get worse. A consult was made with my local access, on-call nurse (thanks for picking up mom!) and I was advised to go to the ER. I bet you can guess what the concern is here. Lol.
I went to my hospital at about 7:30 and it was PACKED. I was in so much pain I could barely shuffle to the check-in window. There were no wheelchairs (spoiler alert: none for hours). I checked in and shuffled down the hall to find a chair. Luckily, someone was called back right then so I hobbled at a glacial pace to the chair. Triage got me about 20 minutes later, took labs, and noted my symptoms.
This photo was taken long after most people had either left because of the long ER wait or had been taken back to a bed. Finally, a wheelchair is available. I didn’t get to use it.
Tales from the Waiting Room
Over the hours, my pain was getting worse. There was a guy who came in a couple of hours after me and appeared to be in significant pain. His approach to getting quicker help was to gradually get louder and eventually got to yelling his discomfort and so he got wheeled back hours before I did. Sometimes suffering in silence is not helpful.
A hilarious interaction I saw was between two men in their 50-60s who were swapping stories. They were sitting next to each other and said they had both been waiting most of the day. They showed each other their left legs where they apparently had both received bug bites of some kind (they guessed spiders). Their budding bromance continued as they watched Jumanji on the waiting room tv together. It made me giggle.
You know, there was something oddly comforting sitting there with other suffering people, knowing I wasn’t alone in my pain and frustration at the long wait.
(So about 7 hours after arrival) I was taken back to a bed and had a chance to finally meet with a doctor.
I just got called back for my CT scan (second attempt) so hopefully they’ll do it this time. I’ll finish writing this later. Please hold.
A Long Story Gets Longer
Okay, I’m home from my ER visit. I was there for 23 hours, and awake for 38 hours (DO NOT RECOMMEND, lol, also might be a personal record?). Oh, man. But we know what happened and what happens from here. And my MCAS reactions were managed quite well. Overall, I’m happy with how it went. Definitely one of my better ER visits. So here’s the rest of the story.
Around 3:30am, on a crazy busy night, I finally made it to a bed. I was utterly exhausted and nervous about how I would be treated by the doctor. Surely they were also having a tough night too.
The CNA wheeled me back into a pretty private area. There was only one other bed in the bay and they were separated by a hard wall. Other bays were open and had 4-6 beds and were much more chaotic. So grateful for where they put me. It was quiet and they kept the light in my “room” off. I don’t like overhead lights. My night nurse, Melissa, came right in. She was wonderful. I explained what was going on and a bit of my prior medical history. While we were going through it the doctor came in. Dr. Tim. Never had an ER doctor introduce himself with just his first name. Haha. He was so great!
We Make A Plan
I went through everything again and Dr. Tim said he thought I need an ultrasound and a CT. He thought I might have a torsion of my right ovary (where the intense pain was) or possibly appendicitis. He also noted that I had some pain up higher on the right side of my abdomen that seemed to be different than the lower right pain. Basically, all of my right side was painful. We discussed pain meds and my allergies to find one that would work for me. I don’t like narcotics and have had reactions to a few of them. We settled on Norco starting at the lowest dose and would work up if I needed it. Fortunately, 5mg of Norco every few hours was enough to cut my pain from 9/10 to a 5. I could handle that.
Dr. Tim left to get the orders in for radiology. Melissa confirmed my triage labs didn’t indicate an infection, and that I wasn’t pregnant (oh good, my pains were not from labor! Whew! hahaha), but because of my primary immunodeficiency, we needed the CT with contrast to confirm. I hadn’t realized the CT was with contrast, so I immediately said that I was allergic to contrast. So now we had to make a plan for how to get the imaging we needed. Dr. Tim discovered the allergy at about the same time and came back a few minutes later to discuss it.
We talked about my previous reaction. My previous premed protocol was 13 hours: oral dexamethasone (dex) and benadryl the night before and IV dex and benadryl the day of. But I reacted on that, so I needed a better pre-med protocol. And preferably one that was not 13 hours long. Dr. Tim thought we could get away with a 5-hour one if we did higher doses of meds. I’d have my ultrasound in the meantime. I didn’t know if 5 hours was enough, but I was willing to try. With a protocol like this, timing is super important so I needed to get meds at the right times and get the CT at a certain time when the meds are at their peaks.
I got my IV with an ultrasound tech. It was so easy. The girl got it on the first shot. Yay! I prefer IVs in my hands, but CT with contrast requires it in the forearm or higher. But it’s usually difficult to get it anywhere else. Historically, it has taken up to 3-4 or more attempts, even in my “reliable” hands. I have lame veins that like to fight off the invading force of the IV. But this was a breeze. Ultrasound placement is the way to go!
Yay for easy IV insertions! And glowy ET fingers!
Ultrasound Time!
Around 6:15am I went for my ultrasound. And I found out I needed an external and the dreaded internal ultrasound. I was not excited. Because the Ultrasound Tech was a guy, the EMT that wheeled me over stayed for the scan and the three of us had an interesting conversation about her decision to go to nursing school. Which was a good distraction from the internal ultrasound. The Tech was a bit of a jaded medical professional (definitely still professional, and honestly, I can’t blame him), but the sweet EMT was excited to be a nurse. I’m rooting for her and told her that I was grateful that there were still people who wanted to be nurses in a post-covid world. And as an EMT working in a hospital, she clearly knew what she was getting herself into. I see good things for her. 🙂
By the time my ultrasound was done, shift change had already happened. When I went back to my room, I met my new nurse, Lucas. He was good, just not as friendly as my previous nurse. I like to get on good terms with my nurses, but he was a nut that I wasn’t quite able to crack. He did his job but wasn’t interested in learning about my conditions or spending time talking. That’s totally fine. But I always appreciate it when I meet medical professionals who want to learn about them.
CT Drama
Four hours after I got my dex, I went to CT. I let them know about my prior history and they then pow-wowed about what to do. One of the techs was sooo kind. He could tell I was nervous and spent time with me making sure I knew they were taking my concerns seriously. I had been so cold in the waiting room and hadn’t had a blanket, unlike everyone else. So the tech went and brought me all the blankets and bundled me up. Hahaha. It was very sweet. I warmed up quite nicely in the chilly CT room.
The other tech and the radiologist came back and let me know I needed a longer premed protocol (I knew I would) and they were sending me back to my room. I didn’t want to be in the ER longer than I needed to be, but I knew I needed more meds before getting a CT with contrast.
Waiting for everyone to finish their pow-wow and to be inevitably sent back to my room without my CT.
A New-ish Plan
I made it back to my room and finally met my day doctor, Dr. Megan. She was also so great! By the time she came in to see me, she’d talked to Radiology and looked at my chart. She had me recap what brought me in and my general MCAS history so she knew what she was dealing with.
She let me know that the ultrasound found a burst cyst on my ovary, but no torsion so I didn’t need emergency surgery on my ovary. What a relief! I also found out I have gallstones. That explained the pain in the upper right part of my abdomen. She said the ultrasound couldn’t quite tell if there was a current infection, and the CT would give us more information about my appendix and gallbladder. She wanted to check with Pharmacy and Radiology and come up with a good pre-med plan.
A bit later she came back and let me know that they had found a new pre-med plan that was stronger and shorter–only 9 hours, and they wanted to go for it. She also said there will be a doctor in the room to make sure I got epinephrine if I do react. I was all for not being there for a shorter amount of time. And a liter of fluids after to help start flushing the contrast out of my body. I got my second shot of dex. I felt good about the new plan.
CT Takes 2 and 3
About 2:30, an hour before my CT, I got my last dose of dex and benadryl. At 3:30pm, Radiology was gifted with my presence again. The swing shift had replaced the morning shift and missed the memo about my situation and high maintenance-ness, so almost immediately I went back to my room. If we couldn’t get this handled quickly, it was going to be another 4 hours (and another shift change) because of the medication timings.
Fortunately, my doctor was able to work it out quickly and I went back to CT within 10 minutes. I had the same tech as the morning and she remembered me, so that was comforting. My nurse came with me and confirmed he would give me epi if I needed it, so that was also comforting. He also brought oxygen, which turned out to be a good thing.
The radiologist wasn’t super patient with me and didn’t really want to listen. He kept saying that I was pre-medicated so I won’t react. I couldn’t tell if he meant to reassure me or tell me I was wrong about my body. It came across as the latter. I told him I was premedicated last time and still reacted. It didn’t seem like he believed me. “I’ve never seen someone react when they’ve been pre-medicated.” I decided to respond with “Let’s hope your record remains unbroken,” instead of, “You’re about to see the first.” I was as prepped as I could be.
And…I did react…but not as bad as the first time, and not as long. The supplemental oxygen helped me feel like I could catch my breath faster, so that was helpful too. I didn’t need any epi. So mostly a win. I mean, I survived, so really, it was a full win.
An ER Visit Comes to an End
Back in my room, I started my fluids. My nurse said it would take a couple of hours to get the CT results. However, my results came back in like 45 minutes. (I think the radiologist just wanted to get rid of me, hahaha!)
Dr. Megan came in and let me know I had no appendicitis! I did not need any emergency surgeries! Woohoo! And I could have food and water again!! Best news of the day.
But she said I needed my gallbladder out because of my gallstones. They’ll only bring me trouble and will possibly cause an infection down the road, which would be very bad. The nice thing is I have time to plan this out and make arrangements for the surgery and save up for the time off. And I will have time to find a surgeon and anaesthesiology to make sure we all feel comfortable. Which is a huge relief.
She also let me know that it looks like when my ovarian cyst burst, it messed up the placement of my IUD so I need to get that replaced ASAP so it doesn’t damage my uterus. I just replaced my IUD a couple of months ago. I’m not excited to go through that again. Ugh.
And as a nice bonus, it turns out my ER doctor is friends with my primary doctor. So Dr. Megan said she’d call her right away and catch her up. I’m very grateful. Conveniently I have an appointment with my primary doctor next week for something else, so we can also talk about my gallbladder, and make sure I’m still doing okay, Another small blessing in the timing of this. I also already have an appointment with a new gynecologist in a few weeks and I can hopefully get my new IUD then, which is also convenient. And as a parting gift, Dr. Megan said she documented the pre-med protocol in my chart so if I ever need a CT with contrast, we can use it again since it worked so well. So grateful!
An Almond Sized Cyst
Without my 3.4cm cyst, I would have never known about my gallbladder. So while quite painful, it saved me a potentially much bigger problem, and for that, I am very grateful.
As soon as my fluids were finished, Lucas pulled my IV, and I was officially discharged! What a relief! I had to wait a bit for my pain medication prescription, so I went to the cafeteria for a light meal to ease my stomach back into food. It had been 28 hours since I had eaten. I can’t fast, so I was a bit nervous to eat. A lot of water, a bag of salty chips, and a bowl of honeydew later, I was feeling pretty good. I picked up my meds and busted out of the clink! My ER visit was over! After 23 hours, I was as FREEEE as Dobby (you know, before he bit the dust, poor Dobby)!
Let me just tell you, after a long, cool shower, and sleeping 13 hours, I feel like a new woman. I still have some pain, but I can deal with it just fine.
A Good Doctor Makes All the Difference
I just want to end this by noting what a difference it makes to have medical providers who are open-minded and good listeners. It is really nice when they recognize patients who have complex and rare medical conditions are the experts in their own conditions. Both of my doctors specifically said, “You are the expert in your condition. So you tell me if ___ won’t work and let’s figure out a solution so you feel as safe as possible.” It was such a different experience this ER visit than even the last time I was in the same emergency room. I had a different doctor who never even told me her name and got frustrated that I couldn’t communicate well (because I was having anaphylaxis?!).
I know doctors are people too, and everyone has rough days at work, and ERs are especially stressful. But bad or even impatient doctors can be traumatizing to have in a crisis when you don’t have a choice about who you see. I don’t have family who live near me. So I’m always alone at appointments and in the hospital. That is stressful. However, good, compassionate, open-minded medical professionals make such a world of difference to the “professionally” sick (and really, all patients). And I am so, so grateful for them. Maybe, just maybe, I won’t be so nervous to head to the ER next time I might need to.
I’m so grateful I learned some new things (like some of my meds can cause significant side effects to my heart, which I didn’t know about so now I can stay on top of monitoring for it!). I got a new protocol in my toolbelt, and walked out better off than I hobbled in.
So now my right side is looking sunny side up!
An Egg Sunny Side Up. Ironic since an unreleased egg is what caused all this ER visit drama. hahaha. Image by maddas from Pixabay
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!
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.]
