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Flare In The Light, 2400 Calvert Street NW, Washington D.C., DC (2026)

07/04/2026

Photos from my trip to Philadelphia that I took 3 weeks ago but have not gotten around to posting until now.

I am an avid traveler and have been on more trips than I can count, but this was the first time I have really traveled since the onset of my fibromyalgia symptoms. Honestly it was incredibly difficult to navigate. I had to move slower than I used to, take a LOT of breaks, and on more than one occasion, we had to change or scale back our planned itinerary because I just couldn't go on any further.

I often get to the point of over exertion and overstimulation, where I get a headache, feel disoriented and can't think clearly or focus, and it's hard to even speak or walk. I start slurring my words and literally act almost as if I am drunk, but I haven't drunk alcohol in over 3 years and am completely sober. This is something that has only started recently, but it now happens pretty frequently, most often at times when I'm out for a long stretch of time and have been active all day.

It's almost disturbing how drastically my abilities (and therefore my whole life) have changed in such a short amount of time. I take medication for fibromyalgia, which generally helps significantly in making my pain and fatigue get to a manageable level, but of course it's not a cure, and with this diagnosis comes having to accept these stark changes and adapt to this new unfamiliar reality. Which is truly devastating at times. But I can either choose to be miserable about it and let it hold me back, or I can grow and keep moving forward in my life WITH it. I have chosen the latter, but in this early stage it's still a hard pill to swallow (no pun intended).

06/27/2026

BLEACHERS FOREVERRRRR
⚡️
So lucky to have been able to see my favorite band for the 6th time, AND I had a floor seat 🤩 Absolutely insane incredible show as always 😌

And I was also very impressed with how accommodating and kind all of the staff were at MSG and how accessible the facilities were. I had my cane and many of the employees assisted me or directed me to elevators and accessible routes without me even asking. Navigating large crowds is extremely difficult for me at this point, not even just from anxiety and overstimulation I often get, but now also because I have physical health issues and mobility challenges. But I felt really at ease during my whole time in the venue and I am so thankful for that! I wish that was the standard everywhere.

06/19/2026

Yesterday I took an uber to the bus stop to then take the bus to work (this bus stop is right at the train station in my town). After I exited the uber car, I went to step up on the sidewalk and literally fell straight down to the ground. 🙃 I don't even know how it happened. Thankfully my crossbody purse kind of provided a softer landing and I had no actual injury or bleeding this time. Two kind passersby helped me up and made sure I was okay. Which I was physically, just a bit shaken up mentally. I made it onto the bus in time and went on my way.

I have had more falls than I can even count, many of them ending up with sprained ankles (as what happened two months ago while on vacation), and cut up knees, which I once even needed stitches for. These falls happen when I'm fully alert and sober, and they're completely unpredictable. It's honestly scary whenever they happen because I never see it coming. I don't know exactly why I'm a major fall risk; I do know my antipsychotic medication can increase the risk, but maybe there are other possible factors at play. I frequently have joint pain and instability/hypermobility as well. At this point it's almost concerning that I think I need to look into it.

I recently started using a cane for support with balance and stability when I'm out and about walking and when using public transit (which is often, because I can't drive). This past weekend I was on a trip in Philadelphia with my lover and I *almost* fell AGAIN while there, had I not had my cane to keep me up. I also recently got myself a medical ID bracelet with my personal information inscripted. Hopefully it never needs to be used, but God forbid I ever have a fall resulting in serious injury while I'm out by myself (which again, is very often), I have that peace of mind that bystanders and/or emergency services will have the information they need, should I become unable to provide it myself.

05/21/2026

This is kind of a different post, more vulnerable.

This is what 3 hours of tweezing your "eyebrows" looks like, when you don't actually have eyebrows that are visible to the naked eye.

Armed with a magnifying mirror, phone flashlight, and a really intriguing true crime podcast, this is the result after 3 hours. Literally looks like red polka dots. . . . .

It's been a while since I've spent that much time tweezing in one go. Honestly I'm not mad or upset at myself. It just physically hurts and it looks very unsightly. I don't wear much makeup on a daily basis, except for blush and highlight. I never wear full face foundation or drawn on brows. And since the skin is very tender while healing and scabbed, it's hard to put on concealer or anything without it creasing or getting flaky. So I guess I'm just walking around like this for a bit.

Such is the life of a Trichster. 🙃

💚

05/15/2026

It's official.
On Monday I was formally diagnosed with fibromyalgia. Incidentally just one day before Fibromyalgia Awareness Day.

After suffering from widespread severe pain almost daily for the past 5 months, finally I have an answer. 🥲 After many blood tests, ruling out everything autoimmune, treating Vitamin D and B12 deficiencies, and still experiencing worsening pain, this was honestly what I was expecting to hear and deep down what I had been suspecting it was for most of this time. My mom also has it, and I was experiencing so many of the symptoms she has on a regular basis.

I would wake up most days with my entire body extremely stiff, including my neck which would get stuck to the side; it would be excruciating just to turn it 90° to a normal front facing position. It was getting hard to even go to work. I work a pretty sedentary job, but the pain had gotten so unbearable I was hardly able to be focused and present with the kids I care for. And I certainly haven't been able to participate in the same level of leisurely activity as before. If I spend the whole day in the city for example, my body painfully pays the price. Some days I would just cancel my plans altogether upon waking up in terrible pain. All of this drastically altered my quality of life in a short amount of time.

With this diagnosis comes a mix of emotions; on one hand it's difficult to find out I will battle a disabling chronic illness for the rest of my life. But on the other hand, the pain has already been happening for so long regardless, that it's a HUGE relief to now have a definitive confirmation, to be validated.

Having an official diagnosis opens many doors. I have started prescription medication indicated for fibromyalgia pain. It's literally only been a few days and by some incredible miracle I already am in noticeably less pain. 🥹 Of course it's not a cure, but if I can get the pain to a manageable level and improve my quality of life, that's the ideal outcome. Beyond medication, I can also seek other targeted resources, community, and understanding.

This is the beginning of a whole new journey and I am looking to the future with clarity, hope, and strong will. 💜🦋

05/04/2026

I have been suffering from widespread chronic pain almost daily for the past 4+ months. I have no diagnosis yet, but am going for further testing this month. Though I still don't know *why* I’m experiencing so much pain, I do know that it has become increasingly debilitating and really affecting my whole quality of life.

On top of the pre-existing chronic pain, I also sprained my ankle and foot 3 weeks ago. My orthopedist told me my ankle joints are very loose and unstable. I bought a cane to use when the injury happened, but I was actually thinking of getting one even before that, primarily for when I travel and go into the city, both things I enjoy doing frequently. At this point, I need to walk slower and take breaks periodically, climbing stairs is incredibly difficult, and navigating the subway system is a huge challenge.

The injury was the driving factor for me to finally get the cane, but it has been a tremendous help even now that my ankle pain has improved. Last weekend was my first full day using the cane in the city; I was out for 12 hours and what a difference it made! I was able to manage the day so much easier and people were so accommodating and considerate. Besides providing stability and balance support, an added benefit is that the cane also acts as a visible indicator to people around me to just treat me with extra patience and compassion (things that people in NYC often don't give by default).

Many days it feels like my own body is betraying me. There are some things that I previously never even had to consider that now shape my daily choices. Unfortunately our society is still largely inaccessible to people with disabilities. I have long been secure in my identity as a disabled person, being neurodivergent and mentally ill. However, being also physically disabled now is very new to me. But I am becoming more accepting of it, trying to give myself grace while adjusting to my new normal, and doing my best to adapt as well as I can.

So though I never planned or wanted this, I'm doing what I can to still make my life as beautiful and joyful as possible, just different. 🌸

05/04/2026

Today I went to the Abilities Expo in New Jersey. I met Gesy Duran, Ms. Wheelchair New York 2026 Her name is pronounced the same way mine is, just spelled slightly differently at the end but both starting with a G. I have never in my life met another “Jessie” with a G before!!! She is such a bright beautiful soul, and I honestly felt like kindred spirits 🤗

I also watched the Runway of Dreams fashion show showcasing people with a wide range of disabilities. Everyone looked so happy to have their moment to shine and be celebrated just as they are, it was so special. I teared up at how palpable the joy was!

This whole day was a spiritually lifting and affirming experience, being amongst hundreds of people with all kinds of disabilities, from toddlers to elderly adults. Where accessibility was thoughtfully weaved into every aspect of the convention center, from live captioning during workshop presentations, to ASL interpreters, a private section of adult size changing tables, free accessible shuttles to and from the train station, complimentary mobility scooters to borrow at the convention center, and more. I wish that all of the world was like this, instead of accessibility usually just being an afterthought.

But it was truly so validating being around that many disabled people all at once, where even without saying a word you can just share a look with someone and instantly get a feeling of mutual understanding and solidarity. With my recently emergent mobility issues and chronic pain, being there today honestly felt just like I did at my first ever trichotillomania conference. The power of Community is so healing. 🥹🩷♿️💫

03/05/2026

I had a really special feel-good moment today I want to share 💜

There's a small shopping center about a 10 minute walk from my house that I go to at least once a week. It has my favorite bagel store, my bank, my hair and nail salon, and a mom and pop type small general store.

A couple months ago, one of the employees at the general store said she loved my hair and that it was so beautiful. I confidently said “it's actually a wig, believe it or not!” She said she never would've known, that it was one of the best wigs she's ever seen, and that she actually used to style hair and so has seen a huge range of good and bad hair. She said that it's still “my” hair and that I should own it and just let people believe it's really mine. Since then, I've come in with many different hairstyles (I think I have at least 15 wigs at this point!) and she's complimented me on “my hair” many of those times.

Today when I came in to buy toilet paper, before ringing me up, she discreetly wrote on a post it note and slid it to me across the counter.
It read, “Where do you get your beautiful wigs? I have a friend who is battling cancer and is looking.”
I wrote down the name of the company, Luvme Hair, and told her that I actually have trichotillomania and explained what it is, and that I shaved my head a year ago and my real hair is still very short. She actually did already know what trich was to my surprise!

She said that her friend has had a hard time finding a wig that is comfortable and looks natural, so she wanted to ask me because every one that she sees me come in with is so beautiful and she really admires me. I told her that I'm very open about my condition and my wig wearing journey; I also wrote down my name and phone number and said to reach out to me if she needed any advice and I'd be so happy to help. She was so, so grateful and said she had plans to see her friend tomorrow and couldn't wait to share the info with her.

When my trichotillomania hair loss got so bad 11 years ago that I finally resorted to wearing a glued on wig from the ages of 16-17, my intention and attitude about it at first was to be as discreet and unnoticed as possible. It was worn as a means of hiding and from a place of shame.

Now, for the past year since shaving my head, my wig wearing journey has been a creative outlet for self-expression; not to hide myself, but to enhance my already high self-confidence. I am secure enough in how I view myself and my trichotillomania that I *purposely* wear a wide range of wig styles to STAND OUT from the crowd!

Battling hair loss as a woman, for any reason, can be identity shattering. Though the causes of hair loss may not be the same, I am so humbled to be able to help other women wherever they may be on their journey. I have NO shame in sharing that I wear wigs on a daily basis, and this interaction today is exactly why. 🥲🩷

Flare In The Light

07/04/2026

06/27/2026

06/19/2026

05/21/2026

05/15/2026

05/04/2026

05/04/2026

03/05/2026

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