The One Where I Find Out I Have Epilepsy

March 16, 2024March 16, 2024 ~ Megan

Epilepsy in Hiding

Did you know you can have epilepsy for decades and not know it? Turns out that’s true. I am Exhibit A.

It started with a twitch. I have a neck twitch. Weirdly, my twitches are unrelated to my epilepsy and they have now been diagnosed as something else–despite that being the family joke for years. But the twitches put me on the path to the epilepsy diagnosis. And in true ✨️Megan Fashion✨️ I did it backwards from most patients. Sigh. Haha.

I’ve been in a specialized type of physical therapy (PT) for my dizziness (at least that’s what it started for), and extreme fatigue, and I’ve found out there are other issues through this PT. It’s been so incredibly helpful.

I LOVE my physical therapist. She is one of the most helpful and open-minded providers I’ve ever had. She’s listened (and listened and listened, lol) to my various complaints and has helped me find the right avenues to figure out what is wrong whenever something new pops up. And I like to think we’ve bonded over our neurodivergent brains. hahaha

This story is a prime example. 🙂

I Get Twitchy Sometimes

Photo by Carolina Heza on Unsplash

In an appointment in the Spring of 2023, I mentioned that one of my exercises was particularly triggering to my twitch and my PT doctor was confused. “What twitch?” she asked. I was confused. How did she not know about my twitch? I’d been coming for almost two years. How had she not noticed it? I twitch many times a day. And I ask most doctors about it…or at least mention it to them. So she asked about my twitch at that appointment.

No, I don’t lose consciousness. It’s usually in my neck, but sometimes in my face and/or arms, or legs. Usually on the left, but occasionally on the right. The twitches happen more often when I’m tired. And talking about it makes it worse. Just talking about it made it happen a bunch in that few minutes. I get quite embarrassed when it happens a bunch of times in a row and I know someone sees it. It’s usually a quick motion of my head, so it’s not always seen, but sometimes it’s repeated several times in a row, which can be annoying. Fortunately, it doesn’t hurt.

My PT asked if anyone had ever identified it, or if I’d seen anyone about it. Yes, I’ve asked multiple doctors (I’ve lost count, I usually mention it when I think it might be relevant) and no, no one has ever had an answer. She asked a few more clarifying questions and smiled slowly.

My Twitch has a First Name…

“I think I know what it is.” She went on to describe the condition, which mirrored my experience. She said it’s essentially a software issue with my brain, rather than a hardware issue (like a brain tumor or MS would be). It’s a legitimate neurological condition. I’m not crazy. And it’s real. But what was the name?! I was dying to know there was a name for what it was. She finally said, “Functional Neurological Disorder.” (FND)

Well, that’s the lamest and most unidentifying name ever,” I laughed. But I also felt the cool relief run through me that there was a legitimate name for what the twitch was.

A Series of Fortunate Doctor Appointments

My PT suggested that I see a specific neurologist at my hospital, who is an expert in the condition and could be the one to diagnose me. Perfect! I sent a message to my Primary Care doctor (she’s also wonderful) and asked her to make the referral.

A few weeks later, I had the ovarian cyst issue. Fortunately, I had a follow-up appointment with my Primary Care doctor a week later that July, so I reminded her about the referral request, which she sent in during my appointment. When I followed up with the Movement Disorder clinic where this doctor is, they said it would be nine months if I was lucky. Sigh. But then a few months later, I was lucky enough to get a cancellation and my appointment was scheduled for November.

I included all this about the timing to just show how long it is to be in limbo. How long it takes to go from appointment to appointment. It’s mentally exhausting, for sure. And I have it easy. I have excellent insurance that is generally willing to approve visits and tests, and (if I pay for the premium plan) a wider range of doctors on my insurance’s authorized list. I’m jumping ahead a little, but it’ll be just over a full year from that first conversation about my twitch with my PT to when I’ll get the week-long EEG done for epilepsy testing. A YEAR. What in the SAM HILL is happening here–that it takes a year to confirm epilepsy from the first conversation with a provider. Anyway, I digress. [clumsily climbs off soap box]

The FND Doctor Appointment

In November 2023, I met with this new neurologist, who was as great as my PT said she would be. 🙂 She confirmed the FND diagnosis, so that was nice to finally have an answer for my twitches.

In questioning me about my twitches, she asked me if I ever had audio hallucinations. I said no. But I thought of times when I had smelled things that hadn’t actually existed. So I told her about that. “Olfactory Hallucinations” turns out are a thing. So that’s fun. Guess I’ve been having them since probably high school? Maybe longer? I smell raw chicken, or raw pumpkin (both smells I hate and make me nauseous), or smoke–like electrical smoke or wood smoke. None of the smells happen at the same time. She asked me about the last time this happened.

The last time this had happened had been about 6-8 weeks before. My roommate and I were both home and I thought I smelled electrical smoke. I felt very anxious and compelled to find the source. I wandered around the house smelling for it but found nothing. My roommate and I both checked around the house and neither of us could find anything. I kept smelling it, but couldn’t source it. My roommate smelled nothing at all. It was stressful for me! What if there was a fire in the walls and we couldn’t find it!! Deep breaths. I remembered the whole thing, still do, and there was no blacking out.

These instances don’t happen very often. But I remembered this was not the first time I’ve thought I smelled smoke in my house when nothing was burning and been super anxious there was a fire in the walls–and there wasn’t. It’s happened multiple times in my life.

Another Referral

After I explained this instance, the doctor said she wanted to refer me to the seizure clinic just to make sure I was not having seizures. She said it’s possible that these instances are part of migraines, but they might also be seizures, so we need to make sure they weren’t. She made the referrals to the Seizure Clinic, a brain MRI, and an EEG to test for seizures.

I was flabbergasted. Was it possible I was having a seizure and didn’t know it? Was that a thing in epilepsy? I knew of only two kinds of epilepsy: petit mal and grand mal seizures. And I wasn’t losing time, so I didn’t think I was having those. I wrote it off as an overly cautious doctor and agreed to go. BUT I would rather have an overly cautious doctor who ordered tests and made referrals than a doctor who ignored things I was concerned about. I’ve been wrong about so many things about my body that turned out to be symptoms. Clearly, I don’t know anything about my body. Haha!

More Testing

In January 2024, I had the MRI (which was a whole thing), and the EEG. The neurologist messaged me after both and noted that they both came back clear with no abnormalities noted. Wonderful! I wasn’t having seizures! Or at least the tests didn’t catch any… I felt confident that the one thing I didn’t have to worry about now was seizures. We can move on. Yay!

I came so close to canceling my appointment with the Chief of the Seizure Clinic. I was absolutely convinced he was going to say I’m not having seizures. Why put myself through another appointment where another doctor was going to shrug their shoulders, at best, and say, “That’s weird, not sure why that’s happening,” and send me on my way. At worst, I’d get the “you’re wasting my time” brush off almost immediately and the doctor wouldn’t even spend any time on me if they didn’t believe me, or try to gaslight me into convincing me I’m wrong. I’ve seen all of these kinds of doctors through the years. Sigh. My chronic illness patient friends will know all about these kinds of doctors. They know doctors like my PT doctor, my primary doctor, and my FND neurologist are rare unicorns. 💜

The Seizure Clinic Appointment

So I walked into the appointment fully, 100% expecting to hear, “Congrats! No epilepsy! and Goodbye!” Instead what happened was interesting and better, and kinda worse.

The doctor did a full neuro workup (awesome!), asked me my history, and asked me about the symptoms that had me referred there. I was very grateful he took this seriously despite my clear tests. I wasn’t getting the brush off! With a bit of relief, I went through them again. I remembered, that I occasionally had auditory hallucinations–where I’ll hear music I almost recognize or remember, or can sing/hum the lyrics but can’t quite remember. I let him know about that too.

After we went through all this, the doctor sat back, “Well, I do think you’re having seizures.”

I’m sorry, “WHAT?!”

I’m not sure I’ve ever had a more clear jaw-dropping moment in my life than that one to this point. Like comically so. It would have been hilarious to watch from the outside.

“Yes, your symptoms are consistent with epilepsy.”

I was reeling. “But my tests were clear…”

“That happens sometimes. That just means you didn’t have a seizure while the tests were happening.”

“I’m sorry, can you clarify? Are you diagnosing me with epilepsy?”

“Yes.”

I blinked and blinked and blinked. What was I supposed to do with this information? I still don’t really know what to do with this diagnosis, even now weeks later.

The Plan Moving Forward

Part of the reason my headaches have been getting worse over the years was because of the seizures (very helpful to know, lol!). He said that one of my meds is also conveniently an anti-seizure medication, so he upped my dose. He said that the reason I’ve had fewer seizures in the past few years is likely because I started the medication and we had been slowly increasing the dose.

The doctor also said that he wants me monitored for a week in the hospital on an EEG to confirm the epilepsy diagnosis. A week in the hospital! I could still work from the hospital, so that’s good. It would be another 3-4 months out. sigh. (Spoiler–it ended up being a 5-month wait–and over my birthday, so that’ll be…fun. lol) I’m not looking forward to this and I’ll be bored. But as my mom said, I’ll get to stay at a 5-star “hotel” with all my meals catered and room service for my birthday! I’ll be waited on by my own personal wait staff (love you nurses and CNAs!!). And I like the hospital’s creme brûlée, so it’ll work out. 🙂

Still shocked, I couldn’t think of any questions except: could I keep my license? I had been worried about this. Fortunately, the doctor said I could, since I don’t lose consciousness. WHEW. Such a relief.

I was sure there was a ton of information I needed, but it was subtly clear the doctor was anxious to get out of there, so I didn’t ask any more questions. After the nurse came in and handed me my check-out paperwork (“Don’t call us, we’ll call you to schedule a follow-up”, uh, okay?) I realized I didn’t even know what kind of seizures I was having. I was so overwhelmed and confused.

What Now?

It would have been nice if the doctor or nurse had provided me with resources or even pointed me in the direction to get more information. Fortunately, I’ve been diagnosed with enough conditions that I know how to do medical research and how to find reliable resources. But in that moment, it would have been nice to have something in my hand and someone knowledgeable to talk to. Anyway. So I did the next best thing: I called my resident on-call nurse.

I called my mom. I think she was more shocked than I was. Can’t imagine why. How do you miss that your kid is having seizures?? lol. To be fair, I never told her about the very weird olfactory and auditory hallucinations. When I was a kid I wasn’t quite sure they actually were happening so I usually just brushed it off, in my defense. They were short and did not happen together or super often. I just always thought they were a weird “Megan Quirk”™ and I had so many “quirks” (which were, surprise, symptoms of all my different conditions) so why bring up another one for a doctor to shrug or roll their eyes at.

Turns out that hallucinations were one that I should have mentioned. OH WELL. hahahaha. And in researching epilepsy since then, I’ve had some other symptoms since childhood too, like a lot of deja-vus, near-constant and worsening headaches, and apparently seizures that have auras with my other senses.

Congratulations on Making it to the End

I found out from my doctor’s chart note that I have focal aware and focal absence seizures (probably because they are probably happening in my sleep too–sometimes a smell or a loud noise has woken me up). These are the most common types of epilepsy–I’ve learned this from researching epilepsy on my own.

So remember days ago at the beginning of this post when I said that I go about things backwards? Usually, people go in for seizures and walk out with an FND diagnosis. Well, I walked in for an FND diagnosis and walked out with an FND AND an epilepsy diagnosis. #onbrand

There you have it. I have epilepsy. Fortunately, it seems fairly well controlled (I think??) and doesn’t seem to really impact me much. If you see me panicking over the smell of raw pumpkin and it’s March–just tell me to chill out and it’ll pass in a minute or two. It’s just a little seizure. 😀

If it’s October–well that’s just (probably) because I hate the smell!

Disclaimer: I’m not a doctor and this is not a way to be diagnosed. 🙂 If you think you are having symptoms that sound similar, please find a doctor who will listen to you and take you seriously. You are your own best advocate. 💜

Right Side Down–An ER Visit

An ironic sunny side up egg with a smiley face

July 9, 2023July 9, 2023 ~ Megan

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 prior to 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.

A somewhat empty waiting room. An empty wheelchair sits in the middle of the floor. — 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.

A screen grab that says, "six hours later"

(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!

My successful ER visit IV — 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.

Megan lying on the CT bed waiting to find out if she's going to get the CT. The machine is behind her at the top of the photo. — 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!

A sunny side up egg. with a happy chick face on it. — An Egg Sunny Side Up. Ironic since an unreleased egg is what caused all this ER visit drama. hahaha. Image by maddas from Pixabay

A World Turned Upside Down

March 29, 2020March 29, 2020 ~ Megan

It’s amazing how quickly the world turned upside down. I live in Utah and two weeks ago I went into isolation. Turns out my main hobbies are shopping and having the freedom to go wherever I want. Ha. Fortunately, I can work from home for the foreseeable future, which has been nice. But I miss going out and running errands and visiting shops and not being scared that everyone I see will have an illness that could kill me. Wow, how’s that for dramatic. Haha. But still kind of true.

And because an apocalyptic plague isn’t enough going on, on March 18th, Salt Lake had a 5.7 earthquake to shake up our quarantine. Yeah, not a fan. I prefer my quarantines stirred. Despite being from California, this was my first significant earthquake. It was not a fun way to be woken up. 5.7 is moderate and we had a few decent aftershocks. Fortunately no damage at my house and no injuries or deaths. So, really, it wasn’t that big of a deal, but I learned I do not like earthquakes. I was so stressed the whole day and my body was really struggling to handle the adrenaline. And keep thinking I feel aftershocks when there haven’t been any. #feelingshakencrazy #andstircrazy

Map of Earthquakes on 3/18/2020 — Map of some of the earthquakes in Salt Lake City on March 18, 2020.

As you may recall, I recently wrote about my primary immunodeficiency. It specifically leaves me vulnerable to lung infections, which is what COVID-19 is. So that’s fun. Utah has started to see the virus spreading in the community, but the next few weeks (months?) of isolation will be crucial to keeping the virus from swarming the community and overwhelming hospitals.

I’ll be honest, it’s been hard. If I catch it, I’m at a higher risk of complications, particularly because of my mast cell disorder. Will I have anaphylaxis to the treatments? Will I even have access to the medical treatment I need? Will I be deemed worthy of medical treatment if medical resources run thin or the system collapses? Will I also be asked to “sacrifice” my medical treatment or medications for some hypothetical future treatment for others? (Also, WHAT?? It’s insane that a pharmacy/insurance would deny a current medication of a patient and then have the gall to thank the patient for their sacrifice.)

It has also been really difficult to find safe food that I can eat. Stores have been sold out of a lot of things. Right after the Governor announced a significant social distancing effort, the stores were picked clean. And running from store to store is not the best idea. This weekend I missed getting to see a play I had been looking forward to for months and months–the show has been completely canceled. I’m so sad. Sad for me, but also sad for the theater and the actors, and technicians, and everyone who has lost jobs. It’s heartbreaking that so many people have (hopefully) temporarily lost their jobs because public places have shut down. Church has been canceled. Temples have closed. Life feels really hard right now. I know this is temporary, but it is reality.

Seeing all the empty shelves was disheartening

I have my six-month check-up with my immunologist and get my Xolair shot (I get it every month) this week. I sure hope I still can. My risk for anaphylaxis goes up significantly if I’m unable to get it. I’ve been trying so hard to eat safe foods and avoid things that fill my reaction bucket so I don’t end up in the hospital. Stress is a big trigger for me, so you can imagine how well that’s going. I’ve taken a lot of Benadryl in the past few weeks.

I called my pharmacy this past week to make sure I’ll be able to get my medicine. They said yes, but they can only provide a 30 day supply of my hydroxychloroquine–even with my doctor ordering a 90 day supply–per a state order (because there’s an unsubstantiated rumor it will help patients with the virus). It worries me that something will happen and I won’t be able to get my medicine. This particular one is critical for keeping my body stable. I once accidentally forgot it for a week and my body was a complete mess and I thought I was going to get hospitalized. Fortunately, within a couple of days of restarting, I was feeling better. Within a week, I was back to my normal. I don’t want to go through that again. My body is already on the edge, I don’t know what it would be like if I didn’t have Xolair or hydroxychloroquine.

While working the other day, I was listening to the Hamilton soundtrack and the phrase “A world turned upside down” has been stuck in my mind since. It sure feels like that right now. It feels so scary, confusing, and overwhelming. I went and made my one weekly trip to the store yesterday and wore my mask, per usual (people still wear perfume, ugh), and people actively ran away from me. Geez Louise, if I had the plague, I would not be in public! That was fun. Oy.

Silver Lining

But the world also feels slower, kinder, more patient, and more moments of peace. I read a post from a woman living in China where they’ve been in a harsh lockdown and she said she’s lived in the city and never knew there were birds in the city. The pollution has gone away there. It’s gone here too.

People are home with their families. People are getting outside and enjoying spring weather (with social distancing!). Kids playing outside. People are finding clever ways to celebrate milestones, birthdays, and weddings. People are sharing more uplifting content on social media. And there have been some hilarious memes! I love all of it.

My oldest niece turned 8 a few months ago and we’ve been planning a special “Gr-8 Adventure” in a couple weeks to celebrate that involved me flying to Sacramento and then us spending time in San Francisco and doing other fun things that she wanted to do. Unfortunately, the trip was canceled due to the virus. Everyone was too worried about me traveling to a virus-infested place. We were both disappointed. Last week I saw a free watercolor painting class given by an artist I love and thought it would be fun for my niece and I to do together via technology. We set up our computers so the instructional video played at the same time and then we painted and talked together (double monitors for the win). It was such a fun couple of hours. Despite the 800 miles and virus that separate us, we were still able to do something fun together.

So, how am I doing? Pretty good, considering. I’m pretty well unaffected. I’m still working. I am pretty introverted, so I have a pretty low-key social life anyway, so not missing much there. Hahaha. But I do miss Church and the Temple. I miss being around people (when I want to be, lol). I miss shopping. I miss not disinfecting everything whenever someone comes over. I miss having breakfast and lunch cooked for me at work. I miss the conveniences. I miss Amazon Prime being 2 days. Lol.

Praying for Guidance

Today we’re having a worldwide fast for all those affected by the virus. For the medical personnel on the front lines, for the government leaders, for the patients and their families, for those that are economically affected. It has been beautiful to see people come together, regardless of their faith, to pray and fast for help and guidance from God. (Fasting from food is really hard on my body, so I’m fasting from something else.)

I was recently reading my scriptures and read about a young man who was asked by God to do something seemingly impossible. Something the man didn’t know anything about. He and his family were far from civilization and he was asked to build a boat so his family could sail to a new, promised land. He didn’t even have tools. So in faith, he asked God where to find the materials so he could make the tools. He didn’t question the direction to build a boat. He didn’t say, okay give me tools for this impossible task. He said okay, help me find the materials so I can make the tools. Help me know how to put the boat together.

To me, this felt like such a direct correlation to today. God has given us all the material we need to fight this virus. We can do the seemingly impossible, we just need direction from Him on how to put it all together. We need guidance on how to help ourselves and our families build whatever boat God is trying to help us build in our lives. And we can, with His help.

In time, life will go back to what it was. Doctors will find the answers to this virus that helps save us from it. This will not be what ends all life on Earth. Overall, I am optimistic. I have faith and peace that God knows what is going on and He has His hand in this.

Maybe we just needed something to help us reset our lives a little and help us turn our hearts a little more towards Him?

And here are some of my favorite memes because that is how I am coping with life right now. hahahaha!

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Empty Shelf where my safe almond milk should be.
Some of my favorite memes so far.

The Epic Tale of Immunoglobulin Therapy

February 29, 2020February 29, 2020 ~ 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!

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

January 9, 2020January 11, 2020 ~ 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.