On July 3, 2021, I took my husband Jon to urgent care for an unexplained, unrelenting skin rash that was taking over his body.

About a month later, we discovered that it was a very obscure condition called Topical Steroid Withdrawal.

Today, I want to share what our journey has been like since that day.

Before I continue, I just want to clarify what this video will not provide.

This video will not provide counsel, which includes everything from quick answers to magic pill advice. Please, do not use this video as a guide or remedy if you have Topical Steroid Withdrawal or if you know someone who has Topical Steroid Withdrawal.

This is simply an account of what we experienced. I just want to get my voice and our story out there.

This video will also not provide a cure. I’ve been frequently asked what I did to “cure” Jon, or what I did to “make him feel better”.

The truth is, there is no cure.

What this is, is withdrawal. It’s not a disease. Only time heals.

Here’s what this video will provide: One caregiver’s experience. This will be frank, to the point, and probably pretty heavy. This video is quite the deviation from my usual flute content, and, while it may seem a bit out of place among my normal videos, this experience has really changed my values and priorities, which in turn have affected the nature of how I talk, how I hold myself, so I think it’s fair to talk about why I’ve changed so much over the past decade.

If you are a caregiver, please know that my experience will not exactly be yours. For example, your TSW warrior may have different triggers than mine does. We’ll probably have a lot of similarities, but please do not think that there’s something wrong with you if some of our experiences and feelings do not align.

Your experience is valid. I’m just sharing mine in the hopes that you don’t feel alone.

So what is Topical Steroid Withdrawal?

The following description is a paraphrase from the International Topical Steroid Awareness Network website combined with our own experience with TSW. In short, Topical Steroid Withdrawal is an iatrogenic condition, that is, a condition caused by medical treatment. TSW symptoms are themselves very similar to the very symptoms that steroids are supposed to cure, but way worse. This is why TSW warriors tend to have a history of being constantly put back on steroids. The skin becomes addicted to topical steroids which includes corticosteroids, glucocorticosteroids, and cortisone in the form of lotions, gels, ointments, creams, or oils.

It’s not a condition that everyone who uses topical steroids develops, nor is it yet known why someone would develop the condition, while others don’t. The skin essentially loses control of itself, and explodes into painful, itchy, large patches of red skin that cracks, oozes, and peels relentlessly. The condition continues in a cycle that bounces back and forth between a period of the skin flaring and a period of the skin calming down, which is commonly referred to as a “break”.

Each flare typically is slightly less intense than the last, though it’s not always the case. There is no true cure, except for time. The symptoms can be slightly mitigated by reducing triggers. Triggers are different for everyone. Could be specific food for some, could be environmental factors for others. There’s much more to the condition, like the development of what’s called elephant skin, anxiety, knocked off circadian rhythms, loss of body temperature control, body spasms, and much more, but that’s the general gist.

To learn more, please visit the International Topical Steroid Withdrawal Awareness Network website, ITSAN.org.

And now, for a brief history of what Jon and I went through:

Jon’s TSW symptoms started in his childhood, and they went all the way until university. His skin was pretty good between university and going into the workforce, and he was on and off topical steroids.

We first started dating in 2014, and the first two years were an absolute struggle for his skin. He had come home from a family trip in Singapore with his skin completely exploded and red all over his body. So, in an effort to fix that, he went on prednisone for one month.

After that, though, his skin exploded again, and for a few months, we tried out Chinese medicine, but it didn’t really do anything. After many more months, we finally found a medically licensed naturopathic doctor specializing in skin conditions, who managed his health holistically through an anti-inflammatory diet and supplements. She was clear with us  that she wasn’t sure what he had, but she was also willing to work with us.

The improvements to his skin were really obvious by the second year. By 2017, his skin was pretty darn great, and it was great all the way up until 2019, when we got married.

Partway through 2019, though, a rash showed up. This rash would not go away for months on end, so after some discussion, we decided to go along with what the doctor told him, which was to go back on topical steroids. The rash persisted, so the topical steroids also continued. At this point, I was actually the one who helped him apply it almost every night.

By the first half of 2021, his skin was gradually getting worse. By July, his skin truly exploded. His skin was red all over, the skin cracking and oozing, peeling everywhere, itching nonstop, and the red rash was spreading at an alarming rate.

In total, we took him to urgent care three times that month. He was put on antibiotics for about two weeks. There might have been a small infection, but the ooze may also have been mistaken for infection. He also had a steroid shot and two rounds of prednisone.

By the end of July, during a desperate search for the uses of tea tree oil for his skin, Jon discovered the diagnosis of Topical Steroid Withdrawal.

However, he still had to continue through to the end of the second two-week prednisone routine that he was currently on at the time. It’s generally dangerous to go cold turkey in the middle of a prednisone routine, so we decided to have him continue through it, even though we knew that the worst was yet to come.

In mid-August, the Topical Steroid Withdrawal diagnosis was confirmed by our doctor, that one medically licensed naturopathic doctor specializing in skin conditions, who, by this point, had now heard of TSW, and had already had experience guiding a few patients through it. Turns out, everything she did the first time around, is exactly what you should do with this condition.

Check out the Coping with TSWS page on ITSAN.org for a comprehensive guide on ways to cope with TSW.

Since then, we’ve just been going through the cycles of flares and breaks, and we’re three years out now. In the first year, Jon had to go on Short Term Disability leave for work, for which we are so thankful. Since last year, Jon has only had to take some sick days for the beginning of especially bad flares, and this year, he is functional. Most people looking at him these days wouldn’t even know he’s dealing with a skin condition, but he is still dealing with it. It’s essentially an invisible condition these days. We now have more good days than bad, and we are able to do more “normal people activities,” like going out on the town on the weekends, or just cooking together for the pure fun of it.

The flares can still happen suddenly and quickly, so it’s still in the back of our minds every day.

So, what was my role as the caregiver for these past three years?

Well, I kept the house clean. Jon’s TSW triggers are mostly environmental, namely dust, mold, and harsh chemicals. Any cleaning involving lots of moisture and/or chemicals must be done by me. Otherwise, Jon’s skin would flare. He’d still try to do it, but I wouldn’t let him.

We did buy a robot vacuum to help, since we absolutely have to run it once a week, but even one week between cleaning days was, and sometimes still is, stretching it a bit. His skin would trigger more frequently the closer we got to cleaning day, so it was pretty obvious that the dirtier the house was, the more frequently his skin would trigger. Our little robot friend doesn’t really get into corners though, so those still need to be vacuumed by hand every now and then.

I mopped all hard floors every other week. It’s generally much faster now that we have a robot vacuum and I’ve developed muscle memory for mopping.

Due to our restrictive anti-inflammatory diet, eating out or ordering in was not a choice, so there were a lot of dishes, which leads me to the next big thing: Cooking.

I would cook anti-inflammatory recipes. We figured out these recipes the first time we dealt with TSW together, when we first started dating, with the help of a tag team which included that medically licensed naturopathic doctor and a nutritionist. So, we were able to fall back on recipes we already figured out.

We jokingly refer to this as the “everything-free diet”. Just to be clear, this is not a remedy. It was originally a scorched-earth approach to figuring out Jon’s triggers back when none of us knew about TSW. However, due to its anti-inflammatory nature, this is a great diet for us to fall back on to ease up his flares a bit.

The diet excluded the following:

• Gluten

• Grains

• Red meats

• Legumes (which means beans, and it includes soy)

• Dairy

• Citrus

• Nightshades

And generally we were told to have as little sugar as possible and to stay away from other very typically inflammatory foods like chocolate, coffee, ginger, spicy foods, fried foods, etc.

Since cooking involves a lot of getting your hands wet, then dry, then wet, then dry, Jon’s skin, especially when it’s flaring, can’t deal with it. Also, whenever he is flaring badly, he’s usually either passed out on the couch or suffering an itch attack, leaving him completely drained. Jon hated it—still hates it—when this happened, so he’d usually call out, “Thank you!” and “I love you!” once every 10-15 minutes while I’d be cooking and cleaning. It kept me going every time.

Probably the most important aspect of caregiving for Jon was just to be present.

I remember watching him procrastinate showering every night, laying on the couch dreading the inevitable. When he’d finally get around to it, I would sit on the floor outside the bathroom, listening to him hiss and scream in agony. Imagine pouring water over a million paper cuts, all over your body. Then, when the skin finally gets used to the water, the next thing you know you have to do is spread moisturizer over those million paper cuts after you get out of the shower because otherwise, your skin will immediately dry up and crack and peel even more. So you stay in the shower for a long time, now procrastinating having to get out of it, all the while gathering up the courage to get out and just get it done.

That’s when I would receive him and help him moisturize. Some nights he’d ask me to get the tea tree oil and mix in a few drops with his moisturizer. Tea tree oil is an antiseptic, and we used it to keep infections at bay.

The screams, when I would help him apply it, are forever burned into my memory.

Whenever he had panic attacks, I was there to remind him to breathe, and to have him breathe with me. I would give him gentle reminders to not poke at his skin, even though I’m really bad at this because I feel like a giant hypocrite.

For those of you guys who have followed this channel for a long time, you guys will know that I also have a history with bad skin. I had cystic acne, and I definitely poked at my own skin.

I would also take over his responsibilities and chores at any time if he needed to rest because he really had no control of when his body would crash or itch to the point of not being able to function.

I’d be there in the middle of the night giving him long head massages to help him fall asleep though body spasms and give him something soothing and grounding to focus on, just to give him a chance for his mind and body to calm down. It was either watching him suffer for 4-5 hours, not being able to sleep, tossing, and turning, scratching, getting up to moisturize, getting back into bed, tossing, turning, repeat. Or, I could massage his head for 1-2 hours instead, and then he could sleep.

In the next bit, I’ll be talking about some of the challenges that I faced as a spousal caregiver.

The first being PR: public relations.

I had to explain TSW to our communities, to our friends and loved ones, so much so that I developed basically our “TSW elevator pitch”. It’s actually exactly what I just shared with you guys earlier in this video.

I learned that it was easiest to explain TSW by sharing official websites and articles published or shared by medical associations and professionals, like ITSAN.org and the National Eczema Association. These websites and articles acknowledge what we are going through in a clearly laid out, professional manner. We can share these articles in addition and sometimes in lieu of (if we’re too tired to explain) our personal anecdotes. It allows us a chance to not have to explain every little detail because we’re already so tired from the condition itself. Fielding questions about the condition while we were not at our 100% was extremely draining and tended to put us on the defensive.

At the same time, it allowed the inquirer to explore and read and click around to learn about the condition.

Regardless, I did learn how to field questions, and I developed some canned answers.

One of the most common questions that we get is: “Have you tried [fill in the blank]?”

For example, “Have you tried antihistamines?” Well, Jon is resistant due to childhood overusage, as prescribed by his doctors.

“Have you tried moving to a different location?” Yeah. We tried out Toronto in 2021, but we found out that TSW is not a location-based condition.

The next most common question is: “When will he get better?” It’s uncertain. Some TSW warriors report only 6 months. Some TSW warriors report over 10 years. Some even longer.

Having prepared answers has really helped, but the biggest challenge in coming up with them has been having to repeat myself. The repetition, however, has ended up becoming a form of “rubber ducking”, and I have had many mental and emotional breakthroughs as a result. So, not all bad. But still mostly bad.

I learned how to sound calm, firm, and assertive, while explaining TSW. The tone of my voice played a huge role in the reaction I would get to my answers. If I sounded panicked or haggard, the most common reaction would be more onslaughts of questions. I get it. They’re trying to save me and Jon, and people generally get very antsy when they realize they can’t save you.

If I sounded calm while delivering my answers with firm resolve, the most common reaction was quiet contemplation and understanding.

Naming myself as a caregiver also gave much more gravity to the situation. It seems to be generally understood that if you can call yourself a caregiver, the situation is dire. And because of this, people give us a lot of space to heal and rest.

Typically speaking, skin issues are never really seen as life threatening, so the amount of care needed is often minimized by people who have not experienced a severe skin condition. This minimization is most often not intentional, at least not in my experience, so I try not to attribute to malice that which can be adequately explained by ignorance.

It’s fair to be ignorant of TSW. It’s an obscure condition. I have found that taking this to heart has made me more forgiving of all the questions, and I don’t feel as defensive.

We often had to (and still do) decline invitations to get togethers with friends and even family. Sometimes we even have to straight up flake out at the eleventh hour. It never feels great when this happens, because many times, my heart is split between wanting to go out and wanting to stay home to care for Jon. Sometimes we explain it’s Jon’s skin, sometimes we don’t. It kind of depends on whether we feel like explaining that his skin sucks that day. We’ve been blessed with loved ones who don’t interrogate us, but in truth, I’m aware that there’s always a chance of being interrogated, so I carefully choose who I decide to share more about TSW with.

Now, with PR out of the way, the next challenge was that I straight up adopted Jon’s lifestyle, mostly the extensive cleaning routine and the diet.

Did I have to join him on his anti-inflammatory diet? No. But, I did it out of solidarity. We’re in this together.

Except for my periods. He forces me to eat red meat, which is not in our everything-free diet, just so I can get enough iron after I nearly fainted once.

We spend around 3-4 hours every Saturday just cleaning.

Why don’t we hire a cleaner?

Honestly? When it was really bad, we probably should have. I didn’t have the mental and emotional bandwidth to do research and explain the situation to a complete stranger. The excuse I gave myself was that we would have had to make sure that anyone we hired would use chemical-free cleaners.

The truth was that I didn’t want to put Jon in the humiliating situation of showing just how much of his skin was flaking off. The skin flakes would typically pile up looking like mounds of sand, and while he was scratching, the skin flakes would peel off and fall around and below him like snow, leaving behind red, bleeding, oozing, angry lesions all over his skin. More often than not, he’d look like he’d ripped himself to literal shreds.

This, of course, begs the question of why I didn’t stop him from scratching. You scratch, or you go insane from the itch. It’s a special form of torture that neither Jon nor I wish even upon our worst enemies. By every right, this type of all-consuming itch shouldn’t even exist; the condition itself is man-made.

Regardless, at the sight of just how much skin would fall off, and how much more would still be half-flaking off his face and body, Jon would regularly be sent into full-blown panic attacks anyway. Scratching, or going insane: it’s always a losing game.

The last thing I wanted to do was to make him possibly have one of these attacks in front of a complete stranger who would be picking up after those mounds of skin flakes.

Navigating marriage in this situation was also a challenge. The first aspect was agency.

I felt I couldn’t have a healthy partnership with Jon if I didn’t allow him full agency. Even though he was thoroughly incapacitated for a long time, I didn’t want the dynamic between us to change. I could not bear to treat Jon like a dependent invalid, even though that’s essentially what he was for a while, because I was desperately hanging on to the Jon I knew as a romantic partner.

Jon would often insist on going for walks, even though he could barely make it down the stairs. The skin on the backs of his legs would crack as he’d sit or kneel to tie his shoes. Every step he took was accompanied by a wince or a stifled gasp. We wouldn’t even make a whole block away from our home before turning back. I still let him do this though, so that he wouldn’t feel like he was forcibly cooped up at home. I did not want to take away this small piece of agency he could summon up when he had just enough energy to leave the house. It hurt to watch him suffer on these short walks, but I let him do it every time.

Jon also explicitly gave me a choice to leave or stay, and he was clear that his top concern was my happiness, not because he wanted me to leave him. He gave me agency. I chose to stay because I knew I would always be happiest with him, no matter the circumstance. If I left him, I’d be even more miserable, wondering how he’s doing. I can’t help myself.

Explicitly choosing to stay has been extremely empowering. Whenever I felt trapped in our day-to-day, I would stop, remember that I chose Jon, and press on with my sights set on a bright future that was yet to come.

If the price of a lifetime of happiness with Jon is a few years of suffering and on and off weeks of being forced to slow down, then so be it. I gladly pay it.

The other aspect of navigating marriage is transparency. As hard as it is, we agreed early on to be transparent about how he felt during this TSW journey.

Jon told me about how he felt helpless and like a burden. He wondered why I was still with him even though he could feel how much his pain was hurting me. When he’d have that fleeting thought wondering what it’d be like if it all just ended, he’d think of me and how much more he’d hurt me if he was gone. He would tell me how it felt like hell would never end, like he’d never be normal, that he’s always going to be broken. So every now and then, he’d ask me again if I was still okay to continue with him.

It took a long time, but eventually I also decided to just tell Jon how I felt too. I felt trapped, in an endless cycle of cleaning, cooking, cleaning, cooking, cleaning, and more cleaning. I was constantly on edge, waiting for the drop of another itch attack, another panic attack, another round of listening to him scream in pain in the shower. Staying awake listening to scratching, sweeping skin flakes off of the bed, tossing, getting up to moisturize, feeling the bed shake with every full body spasm, coaxing his body and mind to sleep with head rubs that would last hours.

The hardest part of these conversations was listening to each other and not placing blame on each other for making us feel what we feel. Placing blame on each other would imply that we’re actively out to get each other, but that’s not what’s happening here. TSW is an unfeeling, soulless entity. It doesn’t care what we think, how we feel, or how much we’re already suffering.

So it’s us versus TSW, and if we’re going to survive this thing together, we had to keep that perspective at the forefront of our minds. It informed us on how to express ourselves honestly but with kindness toward the other person.

Sometimes, our conversations naturally fell toward blaming Jon’s past doctors. However, we reasoned that that would also be unfair because, to be fair, they were giving counsel based on the information they had at the time. TSW is obscure, and not every doctor has even heard of it. It’s not like Jon’s childhood doctors were maliciously trying to poison him. He had doctors that absolutely tried everything and truly sought to understand what was happening to him.

With each cycle of flare and break, I discovered that I have something called—well, I call—the “caregiver crash”.

I was always trying to slog through the two weeks after Jon’s skin would go on a break, not understanding why I was listless, apathetic, and so incredibly tired. His skin’s getting better during these times, so why did I feel so crappy?

There are two sides to this coin. On the one hand, I recognize that this is an insane perk of being a caregiver for someone with a condition like TSW. You do get breaks. It’s not ongoing forever. It comes and goes. The lows are low, but at least you get a break.

The other side of the coin is, well, the breaks make way for my brain to catch up with my emotions, which I’ve inevitably put on hold during the flare so I could care for Jon. I get so angry at TSW for taking my husband away, for turning him into a shell of himself, his body and personality barely recognizable from being tortured 24/7. I forget some parts of his personality until he goes on a break again, when he says something that takes me by surprise, or makes me laugh. How could I have forgotten my favourite parts of my favourite person?

In due course, when the next flare begins, I go into mourning for the first two days. I’ve lost my favourite person again. And while I technically know I’ll get him back, I never know when. Could be one week. Could be six weeks. Many times, it’s just yesterday that we were laughing, kissing, holding each other in the kitchen, or maybe we were out on the town, stuffing ourselves silly and walking everywhere just because we could, and today, I’m suddenly alone in the kitchen, with Jon passed out on the couch.

But hey, my brain will always say, he’ll come back; you just gotta put your nose to the grinder and go back to caregiver mode!

It’s the worst version of having a carrot dangled in front of your face.

Rinse and repeat.

I have mourned the loss of Jon more times than I even want to admit. Each time I get him back, I always think I get to keep him. But I don’t, because the next flare is always on the horizon.

Now what does my “caregiver crash” even look like?

Honestly this is going to be different for everyone, but this is what it looks like for me. 

First, there is a crazy inability to focus. I catch myself thinking of either nothing at all or everything at once. I find myself waiting to drop everything to care for Jon or to do the next chore.

Second is apathy. Everything about work feels stupid and meaningless, even though I do enjoy it when I get down to it, like streaming and teaching. This dissonance is extremely unsettling and confusing.

Third is the intense need to escape. I read a lot during these times. I think it’s mostly to teach myself how to feel emotions again. I tend to shut down my emotions entirely when I’m going through tough times.

Lastly, this one’s kind of weird, but it happens every time. I get very “chores-defiant”, is what I’m calling it. I lose the motivation and the will to do the next chore that needs to get done. These are chores that usually involve something that will irritate Jon’s skin. While my heart gladly volunteers to take up all these responsibilities, my brain often fights against it because it never ends.

I think procrastination is my way of very ineffectively trying to break out of the never-ending cycle of mundane chores and household responsibilities that have to get done in order to keep the house clean enough to not trigger Jon’s skin. To be clear, Jon hates when this happens to me. He wishes he can help, but he physically can’t. He always picks up more chores and responsibilities as soon as he is able—sometimes too soon. He is constantly apologizing for me having to do so much, and honestly it breaks my heart every time.

He finds other ways to comfort and spoil me. He gets me chocolates. He makes me drinks. He does my Spiral Abyss and Memory of Chaos—you know, for those of you who play Genshin and Star Rail.

How do I recover from the caregiver crash?

I adjust my commitments over two weeks to allow for rest. This allows me some time, as well, to wrestle and feel all my thoughts and feelings.

Next, I make myself talk about TSW. Instead of hiding it, if it’s relevant to the conversation, I bring it up. The various responses I’ve gotten really tend to depend on how well they relate to the condition, which is honestly understandable. Over time, I’ve learned how to gauge people’s responses early in the conversation so I know if I can stay on topic or if I need to switch quickly. I honestly don’t really know how much of this is me being a people-pleaser, versus me just trying to avoid having to give long-winded, exhausting monologues defending the very existence of TSW as a legitimate condition.

It’s painful to have to constantly relive and relay our nightmare-turned-reality, but the alternative was not something I was willing to relive. I have hidden this whole experience before, back when we first started dating. I hardly told anyone about just how bad it was. Most people thought it was just bad bouts of eczema here and there. We wish it was. The experience was so lonely and unsupported that I’d rather swallow this pill of having to repeatedly talk about it than to live through that level of loneliness again.

I came up with a half-baked plan this time around: It sounds a little detached when I say it out loud, but I saw it as a game of numbers. The more people I tell about what is happening, the higher the chance I’ll happen upon one person who knows someone else who is in a similar situation. We are, at maximum, only seven degrees of separation away from someone who is in the same situation, no matter how obscure it is.

I got lucky. I found another TSW warrior. We’re able to text each other when things get rough, with little to no explanation or much context. And it helps so much to know someone else knows exactly what’s going on and how it feels. We meet virtually once every 1-2 months to chat. I’ve latched on to their words of encouragement and support, repeating them to myself as a mantra when I’m staring at a wet shower, not wanting to squeegee it for the thousandth time. It’s an insanely powerful aid to motivate me to keep pushing this rock up this hill.

So what am I doing for self care?

I’m currently writing a creative non-fiction account of our TSW journey, from my perspective. It’s eye-opening, and it’s helped me figure out exactly what I’m feeling and why I’m feeling them. I don’t know if or how much I will share of it in the future, so please don’t count on seeing a publication from me. For now, it’s just for me and my healing journey.

I also use music. For me, the constancy of my flute practice sessions provide a source of comfort and stability. The flute is always waiting for me. It never judges me, and it’s a wonderful way to express emotions I have no words for yet.

And third is video games. In the darkest times of our TSW journey, Jon and I were able to use video games to escape. It felt like adopting a different, powerful body that could run, jump, fly, and do all these things we couldn’t in real life. Together, we defeated weekly bosses, completed daily missions, and were able to be our own goofy selves for a small pocket of time. It’s us versus the world. Us, the perfectly complementary team. It reminded us of who we were without TSW. It gave me hope that we could go back to that in real life some day.

Some games depicted aspects of our experience. It gave me a way to look back and reflect on what has happened to us. In particular, the Penacony arc from Honkai: Star Rail was especially cathartic to play through. The rooftop scene with Firefly was essentially a replay of a conversation Jon had with me when we first started dating, when he revealed to me just how bad his skin was and what I would have to deal with if I stayed with him.

Why, indeed, does life slumber? Would you stay in a dream forever, if you could?

The climax and the resolution of the Penacony arc beautifully illustrated how, while a dream can give hope for what real life could be, if we stay in it forever—at the end of the day, the dream is not real, and our problems in real life still exist. Can we truly be happy and fulfilled by running away? If you don’t face the problems in real life head-on, you will never truly survive, heal, and thrive.

Watching this play out on screen and clicking on the dialogue to choose the right path forward felt extremely validating. Perhaps, I’m not so crazy to do this caregiver thing after all.

And lastly, I am starting therapy. It’s been way too long. I really should have started it sooner. I think I finally decided to try it out because I’m now in a place where I feel like I’ve reached my own limit in understanding what we’ve been through and how it’s been affecting us. The weirdest thing is that I feel excited to find out just how messed up I am so I can move forward to become the best version of myself.

And that’s where we’re at now.

Currently, we’re at a point where we can function more or less normally. But flares will force us to slow down every now and then. We’ve come to terms with this.

Jon is now healthy enough that we can stop putting our lives on hold. We’re moving forward with the plans we originally had for married life, but just at a bit of a slower pace than we previously expected.

Recently, it’s felt a lot like getting to know Jon all over again. I’ve fallen in love with him again. And it feels like I get to date him from scratch all over again, with the combined thrill of getting to know parts of him that I’ve forgotten and the comfort of being with my very best friend who loves and knows all parts of me—the good, the bad, and the ugly.

Will we ever be able to fully put TSW behind us? We’re honestly not sure.

Is there going to be another TSW update in the future? Also unsure.

Our future is uncertain, but it’s a heck of a lot brighter than we thought three years ago. In the end, the uncertainty doesn’t really matter because life will go on regardless. There’s really only one thing that matters, that we are certain about: Jon and I have each other.

And that’s it for this very long, overdue update. Thank you for watching and listening. If you’ve made it this far, I truly appreciate just how much you care enough to really hear our whole story.

Please check out ITSAN.org for more information about Topical Steroid Withdrawal and how you can better cope with it if you have it yourself or support someone you know who might have it.

Big hugs and much love to you all, from me and Jon.