Demystification – Living with Chronic Illness

My Ehlers-Danlos Syndrome Challenge: Week Three

Apologies for the wee delay in publishing this week’s roundup. It was a busy week filled with medical appointments! Got the ball rolling on IV infusions of lidocaine for my chronic pain at Boston Medical Center.

Day 15: Wear red – It is global #REDS4VEDS Day! A day dedicated to raising awareness of vascular Ehlers-Danlos syndrome (vEDS) and showing support for people living with this condition. To take part, simply wear red, take a selfie, and post it on social media using the hashtag #REDS4VEDS.

What is vEDS? vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. I do not have vEDS. I have been tested and was negative for it. (I have the more common hypermobility EDS)

The only red in my closet that isn’t Red Sox related.

Day 16: My Type, My Experience. What do I wish people understood about my specific type of EDS?

Hypermobile Ehlers-Danlos folks’ veins are very fragile and “roll,” making it very hard to draw blood or start IVs. Last month, it took six people, four sticks, and two ultrasound-guided attempts to get my IV in before a medical procedure. The IV then blew out towards the end of the procedure.

I always tell medical professionals that I have difficult veins, and they rarely believe me. Only the younger ones do, as they are learning about hEDS in medical school. The sooner they get a heat pack on me, the better their chances are. I was once stuck in an ambulance in my driveway for what seemed like forever while they tried and failed to start an IV.

Day 17: A Message to Someone Newly Diagnosed – If I could go back and speak to myself at the start of my journey, what would I say?

I’d say mobility devices are going to help you do so much more. Don’t listen to that dumb first husband when he tells you that you shouldn’t leave the house because people feel sad when they see you in a wheelchair.

The prompt says to share words of encouragement, reassurance, or wisdom to help someone else. It’s hard to come up with those when you have a condition that no one seems to have heard of. It will get better, though! More medical providers are learning about Ehlers-Danlos syndrome every day. I guess I’d also add that if you find a good physical therapist, don’t let her go!

Here I am in Copenhagen in autumn 2015, shortly after my hEDS diagnosis. Photo by my bestie, Sarah, who always finds the elevator for me. 💗

Day 18: What Rest Means to Me Now-I try not to feel guilty or lazy about resting. In the past, when I didn’t rest, my health got worse. I ended up with shingles twice. I know now that if I do something one day, like go to a medical appointment, I need to stay home and rest the next day. And rest doesn’t always mean sleep. It could be a day of reading, playing video games, writing, watching TV, or movies. But it usually involves a cat on my lap and music. Both cats are excellent at making sure I rest.

Day 19: One Boundary I’ve Learned to Set. – I’ve had to set a slew of interpersonal boundaries in the past, but I’ve gotten to a point in my life where I think the majority of my relationships are healthy. If anything, I’ve set a boundary on my time. I have to be honest with my friends and family about commitments and not overextend myself. As much as my heart wants to be social, I just don’t have the spoons* for events two days in a row. Or for big events like a concert festival.

*Here’s a graphic to help explain Spoon Theory, which was created by Christine Miserando.

Day 20 Point of View: Living With EDS or HSD. Use a trending “POV” format to share a relatable, educational, or light-hearted moment from your experience. Here’s a day in my life. There are a lot of cats.

Day 21: Representation Matters – Why is inclusive research, education, and medical imagery important to you? Inclusive research, education, and medical imagery 🦓 is important to me because the more awareness there is, the better shot we have at successful treatments, empathy, and recognition.

My Ehlers-Danlos Syndrome Challenge: Week Two

My continuation of the My EDS Challenge from the Ehlers-Danlos Society!

Day 8: What Good Healthcare Looks Like-One of my neurologists, Dr. Joy Burke, spends time talking with me about how hEDS (hypermobility Ehlers-Danlos syndrome) is affecting me overall (triggering migraine and tension headaches). She takes notes and helps me find other specialists. This doctor looks at the whole picture, not just her specialty.

Also, she’s the first neurologist in my life to be able to reduce the amount of migraine days I have. Her visit notes are accurate, which is a big deal to me. I hate it when I see a provider and their notes are incorrect or include physical evaluations that they didn’t perform. Dr. Burke makes me feel seen and heard.

Day 9: My Appointment Essentials.-Things that help make me feel prepared include having a list of questions or topics I’d like to discuss. A good book. Water. Emesis bags. For very crucial appointments, a support person who can drive and maybe even take notes. I’m very lucky that my husband and his mom are often able to take me to appointments. My mother-in-law lives 15 minutes away from my hospital and has taken me to infusions and countless appointments. She gives me a place to stay overnight so that I don’t have to battle rush hour traffic early in the morning. And she bakes the best cookies, which always help.

Here I am at a post-op appointment. It’s key to have someone with you to take Hospital Glam photos. Pretty sure my husband took this one.

Day 10: A Question I Get Asked Often-What’s Ehlers-Danlos syndrome is asked of me all the time. Thankfully, it’s being asked by medical professionals less! My answer: it’s an inherited connective tissue disorder that affects my whole body. All of my joints are wonky & arthritic because my collagen is defective. I’m hypermobile (AKA double jointed), which was great when I was doing ballet as a kid, but it’s not so great on a daily basis.

Day 11: A Practical Tip That Helps.-Much to my chagrin, it’s asking for help when I need it. I often overdo things and make my pain worse. My husband is the best at helping me. He’s actually more mindful of my pacing than I am! I’m hoping to get a Visible Health band to help with my pacing. Right now, my Apple Watch alerts me when I’m in tachycardia. The Visible Band warns you before it happens.

The husband and me at Disney’s California Adventure | Photo by Erin Fitzgerald

Day 12: Thank a Healthcare Professional.-Physical therapist Teresa Swango made a huge impact on my life. She was the medical provider who recognized the signs of Ehlers-Danlos syndrome in me. I had never heard of it when she brought it up! Teresa always sought to further educate herself on EDS.

She even met with physical therapist Kevin Muldowney, author of Living Life to the Fullest with Ehlers-Danlos Syndrome, when he evaluated me at his Rhode Island practice. Teresa was very mindful of my hEDS when guiding my PT after surgeries, injuries, etc. She’s the best! Sadly, she left the practice where I saw her and moved just a bit too far away.

Day 13: Living With Comorbidities-One of the most common hEDS comorbidites that affect me on a daily basis is postural orthostatic tachycardia syndrome (POTS). It causes a high heartbeat and low blood pressure. Exercising, showering, and basic activities trigger POTS episodes in me. I take two medications for POTS, but I still have bad episodes. They’re usually exacerbated by heat and exercise.

My nemesis is showering! I have passed out multiple times in the shower so I use a shower chair, keep the door open, and only shower when my husband is home. My cat, Ada, usually stays in the room with me. If she starts meowing a lot, my husband knows to check on me.

Day 14-Something I’ve Learned From Research About Ehlers-Danlos Syndrome: I’ve learned about how my vagus nerve is dysfunctional and what that means. The vagus nerve is responsible for regulating heart rate, digestion, breathing, immune responses, & mood. I have episodes that look like seizures, but my team actually think they’re vasovagal episodes. My bestie, Sarah, is good at demonstrating what they look like for doctors. That’s because she has a theater degree and has spent many hours in the ER with me.

Sarah (right) and me in Edinburgh, Scotland

My Ehlers-Danlos Syndrome Challenge: Week One

A zebra at Disney’s Animal Kingdom Lodge | Photo by Amy Lordan-Tripp

May is Ehlers-Danlos Syndrome (EDS) Awareness Month. I was born with hypermobility type EDS (hEDS). When I was a teen, I was diagnosed with hypermobility but I wasn’t diagnosed with hEDS until 2015. My physical therapist was the one who encouraged me to seek a diagnosis. Her father had a different, but somewhat similar, connective tissue disorder called Marfan syndrome. She recognized the signs of connective tissue disease in me when none of my other doctors or specialists even knew what hEDS was.

EDS isn’t actually rare, it’s just under diagnosed. Medical students are taught, “When you hear hooves, think horses, not zebras.” Thus, the EDS mascot is the zebra.

Each May, I try to take part in the Ehlers-Danlos Society’s “My EDS Challenge” as part of EDS Awareness month. I’ve been posting on Facebook, Threads, and Instagram and I’m collecting the posts here on my blog. Today marks the first week completed!

Day 1: Share your type of EDS or HSD (if comfortable), introduce yourself, and tell us where you’re from – I was born in Massachusetts with type 3: hypermobility, but not diagnosed until 2015. It is a degenerative, incurable condition that affects the entire body’s connective tissue/joints. For more information, visit the Ehlers-Danlos Society.

Day 2: Then & Now – A photo from earlier in my journey and a recent one.

Day 3: One Thing That Might Surprise You About Ehlers-Danlos Syndrome – EDS causes connective tissue defects that can trigger nerve and muscle dysfunction in the gut. The digestive system becomes paralyzed. This is called gastroparesis, which includes severe vomiting, constant nausea, bloating, and premature fullness, often leading to malnutrition. I’m on a low residue/low fiber diet because my body cannot digest complex foods. I’m a vegetarian who can’t eat salads!

Day 4: You can help raise awareness and change lives through the “My EDS Challenge” by adding a frame to your profile picture here.

My current profile picture with the hEDS frame

Day 5: What Helps Me Most. One management tool, routine, support strategy, or habit that supports my daily life. – My morning routine grounds me. I wake up early with my younger cat, Ada. I take my morning meds and eat breakfast. She sits on my lap and we listen to music. I post my “Ten Random Listens” on Threads.

Day 6: Walk and Roll Wednesday. What movement looks like for me – I use a cane, rollator, and wheelchair to get around as I’m dynamically disabled.

Day 7: A Good Day Looks Like … minimal pain, no vomiting, no migraine, little to no subluxations, no fainting, a stroll (using my rollator) with my husband in nice weather, a cat on my lap while I write a blog post and listen to music.

ReyvOW!

OW! My head is killing me. I’ve had a refractory migraine for three weeks. Up until this bout, I had been doing really well with Vyepti infusions and my abortive medication called Reyvow (lasmiditan). But when this migraine started, I was out and driving, and you can’t drive while taking Reyvow, so I wasn’t able to nip the migraine in the bud like usual. It was a few hours later when I finally took the Reyvow, and I just haven’t been able to get rid of this migraine.

After a week with the migraine, I took a low-dose course of steroids. The headache eased a little, but then I finished the steroids and the migraine came back. Bad. My neurologist prescribed a course of Depakote. No luck. So then I got some nerve block injections. I’m still in horrendous pain.

You know what makes this even more fun? My acute medication, Reyvow, which I’ve been taking for a few years now and is the only thing that’s ever worked for my migraines-it’s been discontinued by its manufacturer, Lilly, because it wasn’t popular enough. It wasn’t making money.

I have three Reyvow pills left. There’s nothing left on the market like it. My doctor prescribed a triptan as a replacement, but those haven’t worked for me in the past. But maybe, in conjunction with the Vyepti infusions, it’ll work? That’s what I said to my doctor. She said that she liked my optimism.

In reality, I don’t feel very optimistic. I hate that Reyvow is no longer being manufactured worldwide. I spent the afternoon calling around to various pharmacies to see if they still had any in stock after learning that CVS is now out of Reyvow. An article I read predicted Reyvow would be available until June 2026. It’s only February.

I feel like I’m in an apocalyptic Hellscape where I’ll have to ration these three remaining pills for when I really need them. But how will I decide?

Still Ill?

Morrissey giving me a hug in 1994 | Photo by Craig Lordan

Some people think it’s fun or newsworthy to mock legendary Smiths frontman Morrissey for all of his concert cancellations, but have you ever stopped to think about how your jokes and vitriol affect disabled people who have to cancel plans frequently? Obviously, Morrissey has health issues. Whether they’re physical or mental-it doesn’t matter. When you attack him for his cancellations, you’re being ableist and it hurts.

I’ve been disabled my whole life. I have a degenerative connective tissue syndrome (Ehlers Danlos syndrome), a bunch of comorbidities, and I’m a cancer survivor. As a kid and teen, I missed oodles of days of school. I even missed three months of junior high when I had my first of many surgeries. I had tutors and kept up with my studies. In college, I missed a whole semester but still managed to graduate with honors in three and half semesters (On the Dean’s List every semester!).

My whole life, I’ve dealt with jokes and discrimination because I’m “unreliable.” As a pre-teen, I discovered Morrissey and The Smiths. Morrissey’s music has always been there for me. Do I take issue with Morrissey’s inflammatory remarks from the last decade or so? Yes, I do. But when music publications try to make news items out of Morrissey’s reliability/health, it just makes me feel like crap.

‘Britpop News’ making Morrissey’s health a news item

Just one of many ableist comments in response to the ‘Britpop News’ piece.

In the comment above, there’s a lot to process: 1. Only drug addictions and “serious” medical conditions are valid excuses. 2. If one does have these issues, one shouldn’t work and should “get well.” (Honey-if Morrissey or I could magically “get well,” trust me, we would.) 3. If one keeps working and disappointing people, “you will pay.”

The only positive thing I have to say about that comment is, at least it was in response to a music publication, and not on one of Morrissey’s official accounts. I will never understand why people follow a musician/celebrity just to dump all over them. Do I follow Aaron Judge of the New York Yankees? Hell, no!

Does Morrissey have questionable politics? Yes, and that deserves debate. Can I separate the art from the artist? Well, I guess I really don’t know. But quit the easy, low-hanging ableism.