This entry isn’t as detailed as usual as I’m dealing with some new medical drama (myself and my family). I feel like it’s almost all shoegaze/dreampop-my comfort music! Here’s what I’m looking forward to purchasing on this Bandcamp Friday:

• Misty Coast - Always Sun This Norwegian band’s dreampop/shoegaze album came out this past spring, and I adore it.

  

• The Darling Buds - Same Sun | Same Sky The Darling Buds are one of my all-time favorite dreampop bands from the nineties, and it’s a treat to have them back.

• Callière - Solar The brainchild of British musician Andrew Rose, Solar is dreamy and gauzy.

  

• Manic Sheep - Rewind 2014 Almost lost to time, Taiwan’s Manic Sheep resurrected some lost recordings from, you guessed it-2014-and re-recorded them. I’m so glad they found them!

  

• Stabbing Westward - Wither - ReWired (Pre-order) Warning! Unlike most of the titles on this month’s picks, this one is not shoegaze or dreampop. It’s industrial. It’s gloom rock. It’s my ex-boyfriend on vocals, synths, and programming. It’s a reimagining of their 1996 breakthrough release, Wither, Blister, Burn + Peel in very limited physical quantities, so make sure you order now!

  

• Jessica Lea Mayfield - Miss Obliteration Jessica Lea Mayfield is one of my favorite singer-songwriters. Last year, I was lucky to meet her when she was touring with Lucero. She was an angel and signed a postcard for my Brazilian pal who is one of her all-time biggest listeners on Spotify. Her indie-folk-pop is irresistible.

• MX LONELY - ALL MONSTERS This debut from the Brooklyn outfit combines indie rock grit with shoegaze. Recommended for fans of Hum and Drop Nineteens. MX LONELY mix the salty with the sweet. Rae Haas (synthesizers/vocals) has sleep paralysis, just like me! The band’s name came from a nickname she bestowed upon the sleep paralysis figure who would visit her.

• Thee Marloes - Di Hotel Malibu Gorgeous, mellow vibes from this Indonesian trio.

• Adiós Cometa - Un Destello de Luz Hailing from Costa Rica, Adiós Cometa also bring the shoegaze/dreampop vibe, but with a dash of post-punk.

This past spring, a neurosurgeon in pain management from my hospital did a reevaluation on me as it had been years since I’d had one and my previous neurosurgeon/pain management specialist had just left the practice. She flat out told me that there was nothing they could do for me at pain management. Steroid injections hadn’t helped. Nerve blocks did nothing. Medications didn’t really help.

That was a hard pill to swallow (pun intended!). But then the doctor referred me to Boston Medical Center where they do lidocaine and ketamine infusions for pain management. Getting the referral and appointment was relatively easy. I checked with my health insurance’s nurse case manager (they assign them to complicated people like me) and we made sure that the infusions would be covered. I saw two of the doctors who run the program and they thought I was a good candidate, so I had my first infusion at the end if June.

It’s a bit of a hike for us because we now live in southern New Hampshire. We are on the Massachusetts border and all but two of my medical providers are in Massachusetts. Nothing much happened with the first infusion. I felt a little sleepy, but didn’t get any pain abatement. The doctors and nurses said that was expected and that the first infusion is like a reset of the system.

Today, I had my second lidocaine infusion and I was very, very drowsy during the last 30 minutes. It was actually pleasant. We were early for the appointment and they took us early. Love that! The staff was great, especially the nurse who had to deal with my stubborn veins. She paged the IV team for assistance, but managed to get the IV in just as they came into my room! I thanked her for all her hard work.

While I was getting my infusion, I listened to my “Sleepytime” mix. I used to listen to it all the time when I’d have insomnia, but those nights are fewer ever since I started taking Ritalin. Turns out that I had undiagnosed ADHD! But that’s another story for another day.

So I listened to some chill songs from Hooverphonic, Butch Walker, Gary Numan, and Chris Connelly while my heart, blood pressure, heart rate, pulse oxygen, and were all monitored. Instrumental pieces by Trent Reznor & Atticus Ross, Mac Quayle, and Cliff Martinez were also in the mix. The nurses checked in on me regularly.

By the time I had finished the infusion, I actually felt … better! My pain rating went from a six to a four. It had eased the tension in my neck, shoulders, upper back, and other areas. They reminded me that they had increased the amount of lidocaine that I had received. The nurses said I could possibly feel even better in the days to come. It might not last very long, but this was a promising start.

I feel hopeful, which is kinda weird! Now, I just need this pain relief to stick and for my local hospital to start doing lidocaine infusions so that it’s easier for me to get to. One has to have a ride home, and it can’t be a cab or rideshare unless a support person is accompanying you. My husband ends up having to take half a day off from work to take me into Boston.

Last night, the husband and I ventured out with my new WHILL C2 wheelchair for the “All the Feelings” Boston tour stop: Metric, Broken Social Scene, and Stars at the MGM Music Hall at Fenway. It was my tenth time seeing Metric, second time seeing Stars, and first time seeing Broken Social Scene. We’ve been to the MGM Music Hall a bunch of times since it opened in 2022. What made this different was that it was my first successful concert as a power wheelchair user.

In May, one of my medical providers prescribed a power wheelchair as my hypermobile Ehlers-Danlos syndrome (hEDS) and postural orthostatic tachycardia syndrome (POTS) have made it increasingly difficult and dangerous for me to walk. Before being prescribed the power wheelchair, I’d been using an excellent ByAcre rollator, a transport wheelchair (someone had to push me), or a HurryCane.

Earlier this summer, a kind friend gifted me a Kerdom power wheelchair, which works well in my home, but couldn’t handle Boston city sidewalks. It could not mount a simple curb cut. I began researching power wheelchairs in earnest because outside of the home, long-distance travel, and in cities would be where I need a wheelchair the most. There was drama with health insurance, but that’s a whole other story.

I’m elated to share that the WHILL C2 was a great success, despite the rocky sidewalks of Lansdowne Street, lack of curb cuts, tour buses and restaurants taking over sidewalks, and dumbfounded people both outside and inside the concert venue. It handled like a dream. Not only did it make it over bumps, crevices, and inclines, but the suspension kept the ride smooth.

When we got to the venue, staff let us in without backtracking to the main line entrance, which was helpful. The wheelchair fit through the metal detectors. Security thoroughly checked my clear plastic purse and the basket under the wheelchair, where I had my cane folded up and an attachable drink holder. We didn’t buy any merch as the line went up the stairs, and I really just wanted to get situated. We took the elevator to our level, and a staff member escorted us to our seats in an ADA section. The staff member was helpful and moved a seat so that I could pull in with the wheelchair.

The venue was packed from the get-go for the first act, Stars, and any open spaces were filled in by the time Broken Social Scene took to the stage. A highlight of the Broken Social Scene set was when Metric’s Emily Haines and Jimmy Shaw joined them on stage for “Anthems for a 17-Year-Old Girl.”

Metric were fantastic and dazzling as always. Before they went on, I warned my husband that I wasn’t feeling well and that I may need to leave early. I had been battling a headache and nausea most of the day. But as the show went on, I realized that the two songs I wanted to hear most, “Black Sheep” and “Help I’m Alive,” would be part of the encore. I popped some SaltStick FastChews and soldiered through.

The worst part of the night was leaving the venue. I didn’t go to the bathroom before we left because the line was so long. Getting to the handicapped stall would’ve been a nightmare. Instead, we found ourselves jammed in the elevator where my David Lynch “Fix Your Hearts Or Die” shirt was popular. Getting out of the lobby and getting to the crosswalk/curb cut was a challenge. There was a pedicab parked in front of the curb cut to the crosswalk. Going up Lansdowne was a challenge, but once we were in Kenmore Square, it was smooth sailing.

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Unfortunately, the MGM Music Hall at Fenway does not have gender-neutral or solo accessible bathrooms, so using the bathroom will be tricky. But given who I’m seeing, I’m hopeful that fellow fans will help me out.

It’ll also be my first time taking The WHILL into Boston. Fingers crossed that we’ll survive the city sidewalks. I’m calling the wheelchair The WHILL after the character “The Will” from the beloved comic book series, Saga, by Brian K. Vaughan and Fiona Staples.

This afternoon, I’m going to put some reflective 3M stickers on it to help make The WHILL more visible. The stickers should help alert drivers and inebriated folks to my presence. Drunk concert goers are rarely prepared for a wheelchair encounter. They sometimes trip, push, lean, and fall on me, which is maddening since The WHILL is valued at a higher price than my car! And-oh yeah-I’m valuable and fragile.

A couple of weeks ago, I attended LGBTQ+ Pride Night/Chicken Tenders Night with my husband and our college-age nephew. It was my nephew’s first visit to Delta Dental Stadium, my second, and my husband’s sixth or seventh. He lived in Manchester for a while, so he could explain the “Chicken Tenders” portion of the night.

Minor league teams often change things up and play as an alter ego. Chicken tenders were invented in Manchester at a restaurant called The Puritan Backroom in 1974. I ate there once, and the vegetarian options were severely limited! I much prefer their ice cream takeout service.

Speaking of vegetarian options, the pizza and ice cream at Delta Dental Stadium are both good. The husband and nephew enjoyed chicken tenders on a bed of French fries. All food concession stands were accessible.

At the entrance to the stadium, there are about a dozen free handicapped parking spaces. Unfortunately, the last one was taken right as we arrived, so we were directed to the nearby garage, where parking was $12, paid in advance, and credit cards only. There were handicapped spots located by the elevators in the garage.

The ballpark was much emptier than usual as it had been raining. Getting to our seats was easy. As we entered, a staff member immediately directed us to the elevator to get to our seats. The elevator is located across from the gift shop on your left when you enter.

The only drawback I experienced was entering and exiting the ladies’ bathroom near our seats. There was a door that one has to push open, which is tricky when you’re using a rollator (like a fancy walker). You have to back in and hope you don’t hit anyone behind the door. That could be easily remedied by having a push button to open the door. When I was exiting, a kind person held the door for me.

My only complaint about the evening was that the LGBTQ+ Pride portion was a little lackluster. After having gone to Red Sox Pride Night at Fenway, I was expecting a bit more. But I guess that’s the difference between a Double-A team and a major league team budget. The best part of the night: The New Hampshire Chicken Tenders beat the New York Yankees’ Double-A team, the Somerset Patriots.

I’m still going through my health insurance to get a wheelchair approved. That’s been the case since May 11. The first two wheelchair vendors didn’t work because their physical therapy contacts didn’t pan out. One ghosted us; one couldn’t do a physical therapy evaluation until September.

Yesterday, my health insurance case manager told me she found a vendor that was a little far away, but they’d come to me for the evaluation and deliver the wheelchair. My primary care physician called and said that the new vendor had contacted them, and I just needed to set up a physical therapy evaluation. All of these phone calls happened while I was out at a … medical appointment.

I can’t use the wheelchair clinic at my main hospital because they dropped my insurance earlier this year. So, I set up an evaluation with a fantastic physical therapist I had worked with in the past at an outpatient facility that still accepts my insurance. I magically got an appointment in July.

Then I left a detailed voicemail message with the latest wheelchair vendor. I didn’t quite catch the name of the vendor because I was in a busy hallway when my case manager called. Nor did I know where the vendor was located.

The vendor representative called me back and had zero customer service skills. She told me that Brad (I honestly don’t remember their name) wasn’t going to drive to Massachusetts for an evaluation because they’re “all the way up in New Hampshire.” Turns out they border Maine. Meanwhile, I live in New Hampshire on the Massachusetts border. My primary care physician and all of my medical providers are in Massachusetts.

I told the vendor representative that I had contacted New Hampshire’s CPTE Physical Therapy last week, but that I hadn’t heard back from them yet. I told her that they had locations in Manchester, NH, and Nashua, NH. I asked if “Brad” would come to Manchester or Nashua, and she was reluctant to say.

So I’m back to the drawing board. I went from thinking I was going to have the physical therapy evaluation next month to no date in sight. And of course, I could go through all of this and still have my insurance reject the prescription.

Sigh.

Last week, I visited Fenway Park with my husband and dear friend for LGBTQ+ Pride night. It was the Toronto Blue Jays against the Boston Red Sox, and it was my first time at Fenway as someone using a rollator/wheelchair. In case you don’t know, a rollator is like a fancy walker. In my case, I have a 2-in-1 rollator/wheelchair.

When I was a kid, I used to go to Fenway all the time. My disabilities were not as bad as they are now. Of course, I have a memory imprinted in my brain of the time my right ankle subluxed while I was walking down some stairs behind home plate, and I fell. Back then, we had no idea what hypermobility Ehlers-Danlos syndrome (hEDS) was. Payton Tolle had yet to be born!

We got to Fenway early for the Pride Night VIP party, so luckily, we were able to find parking in Kenmore Square. Gates opened an hour before they opened to the general public. Navigating Lansdowne Street was challenging with a mobility aid. I would have loved to have used my Kerdom electric wheelchair, but it would not have been able to handle the bumpy sidewalks. (I’m waiting for the gears of health insurance to grind so that I can get an electric wheelchair that can handle city streets. More on that in the future.)

Fenway Security was polite, and I had no problem fitting my rollator through the security gates. I had a clear bag, and we each brought in one 16 oz. sealed bottle of water, which they allow. In addition to the aforementioned hEDS, I have postural orthostatic tachycardia syndrome (POTS), migraine, asthma, gastroparesis, autoimmune disease, and more, so I packed the following in my clear plastic tote bag:

• Prescription medications in their original packaging

• Coola sunscreen for face, body, lips, and even scalp/hair (I get wicked awful sunburns on my scalp).

• SaltStick electrolyte tablets

• Touchland hand sanitizer (in a Hello Kitty case, of course)

• Animal Crossing bucket hat

• Sunglasses (prescription, because the hEDS is affecting the collagen in my right eye something awful!)

• Wallet

• Emesis bags

• Anker battery for my iPhone

• Baseball cards

• Grenades gum (They are the best for clearing out your sinuses!)

I wish I had brought:

• Tissues

• Liquid IV

I almost always have tissues on me. I really dropped the (base)ball on that one! I’m what Patton Oswalt would call a Zombie (Read Oswalt’s book Zombie, Spaceship, Wasteland). Basically, I was prepared for anything.

After going through security, we got in line for our free Pride Night soccer jersey and VIP soccer scarf. While in line, we asked for accessible directions to the Sam Deck. The Fenway staff person gave us directions to an elevator that was actually behind us, so it was smart to ask.

Pride Night swag acquired, we made our way up to the Sam Deck. The views were glorious. I chatted with a fellow rollator-user. We talked about compression socks, Red Sox, and the drag show that would be happening under the bleachers.

After spending some time at the Sam Deck, we took the elevator back down to the main level. We got some food and realized we had to go back in the elevator to get to our seats in the last row of the Grandstands, section 3. Our seats were located right near the elevator.

There were two companion seats bolted down and a folding chair where I would sit on my rollator as a wheelchair (it can also be used as a “transport” wheelchair, meaning someone could push me, but I can’t self-propel). My husband moved the folding chair to make room for me.

The only drawback I experienced was that the handicapped accessible bathrooms were far away. My friend asked where the closest one was, and she was directed to one that was on the same level as our seats, but ended up being pretty far away. When I was strolling, there really wasn’t enough room for me to pass at the same time as someone coming from the other direction. And there were spots where there was definitely only room for one person at a time.

It was like a game of chicken. Except for me, it’s a major struggle because of the POTS. My heart rate went up to the 140s, then crashed down to 30. When I got to the one handicapped bathroom, there was a line. A Fenway staffer assisted me by opening the door for me and holding it open as I went in. The staffer also helped me exit.

The stroll back to our seats was even harder than getting to the bathroom, as there were even more people trying to get to their seats before the game started. I was gone for so long that my husband texted me to see if I was ok. The three of us learned that 1. Someone should go with me to the bathroom next time 2. It might be quicker and easier to take the elevator to the bathroom on the ground level.

We stayed at our seats for the duration of the game. The view was decent, but we couldn’t see the large scoreboard above the bleachers. Thanks to Scotland’s recent World Cup victories, there were loads of Scots in attendance, making the game extra fun. Sadly, the Sox lost despite a strong outing from Tolle and a home run by left-fielder Jarren Duran. But pretty much the whole night, I was thinking, “If Fenway Park can be made this accessible, and it was built in 1912, why can’t every venue be accessible?”

On deck: an accessibility review of Delta Dental Stadium in Manchester, NH, on Fisher Cats’ Pride Night, plus loads of reviews of Boston-area concert venues.

I’ve included links, and in some cases, I may earn a small commission from purchases. Buying through these links helps support my writing. These are all things that I actually own and bought myself. Being disabled is expensive!

Shannon explained her anticipation for the film, “The reason I was so excited is that my brother and I used to watch the original [He-Man] together. He also had the figures, and we would make up stories and adventures. He and I were really close when he was younger, and I was always drawn to science fiction and fantasy rather than dolls or princesses, so it was fun for me, and we kind of bonded over He-Man.”

Jason bought tickets online for the 7:50 PM screening, and many shows that day were sold out. The couple had gone to many movies at that theater because it advertised its Closed-caption glasses.

“We had visited in the past, and they had closed caption glasses. I could watch the movie and see captions right there. They no longer have those. Instead, they gave me what looked like a cell phone attached to a gooseneck that supposedly locks into the cup holder. We got into the movie first thing to set it up. It took a bit, it worked for one preview, then it said it was unsupported by the movie.”

Jason left the movie theater to tell a staff member about the problem. The staff member said they would try to figure it out and would come back with it if they could fix it. No one ever came back.

As Shannon is deaf in her left ear and hard of hearing in her right, she did her best to enjoy the movie. “I could read lips, but missed most of it when shots didn’t focus on the face. Also, the CGI characters like Skeletor were impossible to read.”

On Facebook, Shannon posted: “I was so excited, only to miss over half of the movie’s dialogue … unfortunately, much of the dialogue was spoken by characters who really didn’t have lips. Just Pooh! Frustrating! Regal theater needs to do better!”

After the movie, Jason tried to find a staff person. Finally, they spoke with the manager. He said the movie sent to the theater wasn’t caption-enabled.

“He did give us four free tickets and popcorn vouchers to come back. I asked him if they did Open captions because what good would free tickets do for Masters of the Universe if the device didn’t work? I asked why they didn’t notify people about the lack of captions. There is no way to tell if it would work until the movie starts. He apologized, but really rushed us out.”

According to the Regal corporate website, “Regal proudly provides assistive technology for our guests who are deaf, hard of hearing, blind or have low vision.” Do you think Regal could be more consistent with their accommodations for patrons with disabilities? If so, you can contact Regal on their website, Facebook, or X. The specific theater is Regal West Manchester, 455 Town Center Dr., York, PA 17408. Their phone number is 844-462-7342. This incident took place on June 5. 2026.

Since my diagnosis of hEDS in 2015, I’ve been using various mobility devices. Of late, I alternate between a HurryCane cane for very short distances and stairs (which are very hard for me to do); a colorful, lightweight Danish byAcre Nordic Pioneer rollator that my bestie won for me on Instagram (!); and a 2-in-1 rollator/wheelchair. The 2-in-1 wheelchair is considered a “transport” model because I can’t self-propel. I have to be pushed.

When I saw my doctor, I asked about making the move to a self-propelled wheelchair because I’m maxing out at 1/2 mile with the rollator. My POTS kicks in. My doctor said a manual wheelchair wouldn’t be a good fit, because it would be just as exhausting as a rollator, so she prescribed a power wheelchair.

A month ago, I started the daunting task of trying to get my health insurance to cover a small, folding, weatherproof, power wheelchair. It’s still ongoing. My health insurance case manager said it didn’t look good because they only cover wheelchairs for use in the home. Benchmarks such as needing aid with “toileting, feeding, dressing, grooming, and bathing” are required. I am able to do most of these things, albeit slowly, with my current mobility devices. I do need a great deal of help from my husband, and some days, I can’t do three of the five.

While the gears of health insurance grind on, my pal, Tricia, read about my predicament. Last century, Tricia and I worked together at Newbury Comics. But we’ve kept in touch on social media. I love seeing what she and her two amazing kids are up to. Last week, Tricia contacted me with pictures of a Kerdom Mobility power wheelchair and the message: “LOOK WHAT I HAVE FOR YOU!!!!” I was in disbelief. By the week’s end, my nephew and I had picked up the wheelchair!

Thanks to Tricia and the Community Caregivers of Greater Derry/The Loaner’s Closet for Durable Medical Equipment, I now have a Kerdom wheelchair, specifically a “Folding Power Chair ‘World’s Lightest’ 12AH with Airline Approval.” I’m so excited to use it all around New England, as I am an “Elite Reviewer” on Yelp!, where I make sure to bring attention to accessibility in my reviews.

I’ll be taking the wheelchair to its first concert tomorrow night when I go to see Amyl & the Sniffers at MGM Music Hall! I’ll be reviewing how the wheelchair performs, and this summer, I plan to start an accessible guide to concert venues here on this blog. So make sure you’re subscribed for updates!

The post New Wheels appeared first on This Charming Amy.

Day 23: What Earlier Diagnosis Could Change – One could start wearing braces, using kinesio tape and mobility devices earlier to decrease the amount of subluxations, thus decreasing the amount of injuries. Also, accommodations could be requested in school and work sooner.

Day 24: Something I’ve Unlearned. Living with EDS often means unlearning internalized pressure, guilt, or unrealistic expectations. What have you unlearned?

I’m still working on unlearning stuff. I feel guilty every time I cancel plans on someone. I want to do things, but I’m not always physically able. I feel internalized pressure to have accomplished something every day. I’m getting a little better at unrealistic expectations though! As I’ve mentioned in previous days, I’m getting better at doing stuff every other day because I just don’t have the energy for events two days in a row.

Day 25: Gratitude Moment – Share one thing, big or small, that you’re thankful for today: I’m thankful for so many things! The first item that popped into my head is the byACRE rollator that Sarah won for me! It’s light enough that I can lift it out of my trunk and it’s a head turner! I get compliments on it wherever I go.

I’m also thankful for Vyepti infusions, as my number of migraine days have gone from 20-something a month to 7 or so a month. Also, Fasenra injections have eased my eosinophilic asthma tremendously. And there’s my stockpile of Reyvow abortive migraine medication. The manufacturer ceased production worldwide in November, but I’ve been able to get it filled each month at a secret location. (They expire in 2028, so I hope another migraine medicine comes along that helps me!)

My AP British Literature teacher would tell me that people aren’t things, but I’m so thankful to my husband, friends, and family who have supported me. And of course, my fur babies Griffin (RIP), Candy, and Ada. If it wasn’t for that Fasenra, I never would’ve known the love for our cats. Candy and Ada are on the record as emotional support animals! And Ada is even good at alerting Jon when I’m experiencing sleep paralysis episodes.

And a laundry list of my favorite things that help me cope: music, libraries, reading, movies, doodling, coffee, TV, travel, video games, living vicariously through Erin Fitzgerald’s vlog The Erin Space, and watching baseball.

Day 26: Coordinated Care In Action – What would truly coordinated, collaborative care look like in your life?

Once upon a time, I had a nurse case manager at my hospital and she did an admiral job of attempting to coordinate care. She had a pharmacist run a check on all of my meds to see if there were any negative interactions. Then she was laid off.

I just started working with a nurse case manager from my insurance company. She’s been really sweet so far and has been helping me to try and locate a physical therapist who has Ehlers-Danlos experience. I’m going to ask if she can have a pharmacist check my meds, as it’s been a while.

I would love to see truly collaborative care. I feel like many of my problems stem from my vagus nerve/hEDS, so it would be swell if my all or most of my medical providers could meet together. Or at least email each other! I am lucky to have a fantastic PCP who’s excellent at referring me to appropriate doctors, but she’s nearing retirement age.

Day 27: Growth I’m Proud Of – What personal growth have you experienced over the years?

I used to feel self-conscious about using mobility devices and braces, but I’ve grown to realize how helpful they really are. I’m able to do so much more when I use my rollator vs. my cane. Soon, I’ll be transitioning to a power wheelchair and I’m looking forward to more freedom (though I’m still not gonna be a fan of cobblestones!).

Day 28: What Progress Would Feel Like – Imagine progress over the next 10 years. What would that feel like for you or the community?

I can hope that some sort of biologic will come along to treat EDS. Right now, the part that is most difficult for me to tolerate is the gastroparesis. It has a limited diet (low-fiber/low residue), I have to eat small, frequent meals, I have to eat loads of protein, I have almost constant nausea, no appetite, and I vomit almost every day. I honestly would love to eat a salad and not get sick! That would be progress for me. (Of course, that would also mean treatment for oral allergy syndrome and MCAS-let’s hope that happens, too!).

Day 29: What Awareness Means in My Country – How does awareness show up where you live? What changes would you like to see?

I feel like folks don’t really know what Ehlers-Danlos syndrome is. I didn’t know what it was until one of my medical providers brought it up in light of my hypermobility over ten years ago.

I would love to see more knowledge and experience among my medical providers first, especially physical therapists. Then the general public. I think people who have heard of EDS know about it because of celebrities like Lena Dunham, Sia, and Jameela Jamil have it.

I think that campaigns like this one and EDS Awareness month do help bring attention to EDS and hypermobility. I also hope that this blog helps a little bit! I just need to write my autobiography!

Day 30: Why Research Matters –

I’d greatly appreciate continued research for better management of hEDS and an improved quality of life. Today, I have so much I’d like to do, but my body is knackered because I had seven medical appointments in four days. It would be so exciting if there was more research into something like the vagus nerve, which affects so many issues I face.

Day 31: Moving Forward Together – What gives you hope as we continue building awareness, research, and education for the next decade?

It’s been over a decade since I was diagnosed. In that time, I’ve gone from having to explain what Ehlers-Danlos syndrome is to medical providers to the majority of them at least hearing of it before. The new generation of medical providers already seem more knowledgeable and often explain EDS complications to their elders.

I’m hopeful that with more research and education, there will be better treatments for EDS and its comorbidities. Next month, I’ll be trying a new treatment: lidocaine infusions for pain from hEDS and fibromyalgia. It gives me hope that pain management doctors are trying treatments like that. Breakthroughs like Fasenra (for asthma) and Vyepti (for migraine) also lead me to believe that there could be hope for EDS.

As for awareness, I’m pretty psyched that there are comic book superheroes with EDS! Marvel has Sun-Spider and DC has Starfire!

The post My Ehlers-Danlos Syndrome Challenge: The Final Days appeared first on This Charming Amy.

I was hoping to get a power wheelchair so that I could do more outside my home! I didn’t expect insurance to cover all of it, but was hoping they’d cover a portion of it. With hypermobility Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, fibromyalgia, asthma, migraine, gastroparesis, etc. I don’t have much energy and tire quickly. I experience subluxations and dislocations. I fall. I pass out. I go into tachycardia.

I currently use a fantastic byAcre rollator and a 2-in-1 rollator/transport wheelchair. So it’s no surprise that one of the wheelchairs I’m considering is the PAISEEC 3-in-1 Electric Wheelchair W3. I haven’t had any contact with anyone who’s used this brand yet.

But also in the running are: FOLD & GO MAGSHOCK (It comes in purple! It’s weather-proof!) and the WHILL model C2 (It comes in pink! Its weather-tested rating is IPX4!). Note that the Fold & Go MAGSHOCK in purple is sold out but more are being made. It comes in eleven other colors. I’ve spoken with one person who’s had it for a while and loves it.

And last, but not least, the OAS ULTRA ELECTRIC WHEELCHAIR in pink, of course. It seems like a good starter power wheelchair and will start shipping mid-June.

If anyone has any opinions on which wheelchair I should get, please let me know! One of the big issues is that we need to be able to fit the wheelchair in a car trunk. You can reach me on Instagram or Threads. Or comment on this post! You can also message me on Facebook.

So far, the best endorsements I’ve gotten are for the WHILL MODEL C2. Of course, it’s the most expensive one! But my birthday is next month, so maybe I’ll get the best birthday present ever!

The post Wheelchair Decision appeared first on This Charming Amy.

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)

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.

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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.

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.

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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.

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.

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But back to Bandcamp! My favorite place on the internet to buy music. Here are my latest picks:

• Amazing Royal Crowns – Payback Live Now available exclusively on Bandcamp,
  the Crowns’ live album, recorded in 2000, is now available for purchase as a digital album. Payback Live is not on any streaming services, so make sure you snap up this live, rockabilly delight.

• Lime Garden – Maybe Not Tonight I fell hard for the single and album opener “23.” Then I attended their virtual listening party (on Bandcamp) and needed to pre-order the album on midnight blue vinyl. Recommended if you like Elastica or solo Charlotte Hatherley. (I like this album so much, this is the second time I’ve picked it! When I wrote about it before, it hadn’t yet been released.)

• Miss Grit – Under My Umbrella A thrumming, gorgeous album. I listened to it multiple times in a row when I first got it. Margaret Sohn, AKA Miss Grit (they/she), has combined dreamy vocals with a trip hop sensibility. Think Chrystabell meets Massive Attack.

• Die Feen – A Night at the Golden Nugget Lose yourself in this cool, goth, darkwave EP from the DC-based Die Feen. It has hints of Bauhaus, Gary Numan, and The Sisters of Mercy.

• Failure – Location Lost Another gem from Failure. I’m positively obsessed with the closing track “Moonlight Understands.” Paramore fans will want to take note: Hayley Williams features on “The Rising Skyline.”

• Altın Gün – Garip The Dutch/Turkish psych-groove act takes on the songs of Neşet Ertaş with their sixth studio album. It’s sultry and Arabesque. My favorite track is “Bir Nazar Eyeldim.”

• Burned As Witches – Burned As Witches Ash drummer Rick McMurray’s killer side project is doom-y and riff-tastic. Recommended for fans of Queens of the Stone Age.

• Brigitte Calls Me Baby – Irreversible BCMB’s Irreversible is filled with jangle pop that’s infectious. Sure, singer Wes Leavins sounds eerily like Morrissey. But has Morrissey ever name checked a David Lynch movie? They hooked me with: “I bought Blue Velvet on DVD | I brought it to the slumber party.” And really, Leavins sounds like Gene’s Martin Rossiter. I have room in my heart for more than one crooner. Besides, Morrissey has broken my heart.

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Cherry’s life gets turned upside down when her husband’s webcomic becomes an international hit in print. And then becomes a movie! He’s spending all his time in Los Angeles while Cherry is in Omaha with “his” dog, Stevie Nicks. Things go awry and Cherry finds herself separated and on the road to divorce. But then her dashing college crush, Russ, appears!

Rowell does a great job of navigating body positivity and what it’s like to be a fat person in our new Ozempic world.

Rating:

Publication Date: April 14, 2026

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It’s another Bandcamp Friday! That means Bandcamp waives their revenue share and passes the funds directly to artists and labels. It’s one of the best ways to support those artists you love. According to Bandcamp, over $120 million has gone directly to labels and musicians since Bandcamp Friday’s inception in 2020.

Here are my picks for this Bandcamp Friday:

• Black Cross Hotel – “Rebel Yell” The Chicago outfit brings an industrial/darkwave flare to the Billy Idol classic.

• Various Artists – HELP (2) This all-star compilation from War Child Records features Pulp, The Last Dinner Party, Depeche Mode, Blur, Beth Gibbons, and so many more greats. Your purchase supports humanitarian efforts in Gaza, Yemen, Ukraine, and Sudan.

• Yeah Everything – Better Than I Remember EP Infectious indie rock from New Hampshire.

• The Early Years – Modern Moonlight (Pre-order) Soaring British rock. Echoes of Embrace but with a modern, electronic breadth.

• Ora Cogan – Hard Hearted Woman (Pre-order) Cogan’s debut for Sacred Bones Records. It’s got a baroque-folk-gothic vibe. I’m quite in love with the track “Division.”

• The Cybertronic Spree – ANYTHING! This Canadian band had the catalytic converter stolen out of their touring RV. They are serious fun.

• Good Day Father – “Sonic Amadea” I am completely obsessed with this gorgeous single by Brian Futter of Catherine Wheel with Tanya Donelly of Belly. It’s exactly what you’d want from the two.

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