Traveling with topical steroid withdrawal

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In my 9 (going on 10) months of topical steroid withdrawal, I did my fair share of traveling. There were day trips, weekend sleepovers, and finally my two week long honeymoon. It was a lot of fun, despite my skin. Since I see travel related questions all the time, I thought I could write up on all my experiences. Hopefully it will aid you if you decide to travel during topical steroid withdrawal.

Weeks long getaway:
In travel that lasts longer than a week, you have to be prepared.

Flying
No doubt, flying is drying!

Two weeks before: up your water and oil/fat intake. Don’t change anything topically. This will help prepare you from the inside out.

Try ready hard to get aisle seats, especially if you have tiny bladder like me. I downed water and orange juice. Vitamin c is a natural antihistamine and for me, oj and water combo helped immensely. If you don’t see aisle seats available online, try calling them. If you use moisturizers, pack them in appropriately small containers and bring them. If you don’t normally use them, don’t start on the airplane- it’s not the best place to have a itch fit. Wear thin layer and bring a blanket so you can scratch over the layers for relief, or cover yourself with blanket if you need to put your hands up your shirt or down your pants. It’s ok we’ve all been there. Now is the time to start taking pills. Antihistamine is much more effective if your system hasn’t gotten used to it. Try to save that for moments like when you’re locked in pressurized metal cage that recycles very dry air. I’m torn on sleeping pills because I think regular water consumption is so important. If the itch goes away when you sleep though I’d consider it.

Destination
For many, weather matters. I do best in cold climate. Sweat is a major nono. Sun is a bonus, as long as the weather stays cool. So for me, New England, Canada, and Chicago was the perfect destination for me. What weather does your skin enjoy? Do not underestimate the weather.
What will you be doing? You want somewhere that will provide you with maximum distraction. If the place is interesting enough, it will greatly aid in forgetting about your discomfort. But, since tsw is unpredictable, you want flexibility. Do not travel with a hardcore tour group that jam packs your schedule. You want excitement on your own time.

Lodging
If you are staying with a relative or a friend, talk to them to make sure they are fully aware of your condition. Encourage questions, and answer them honestly- don’t downplay your illness, but don’t scare them either. It may be awkward, but ask what laundry detergent they use. Ask if they use a dryer sheet. Wrong detergent and dryer sheet can seriously irritate your skin. If you are close enough to ask for them to specially specially wash and dry your sheets, do it. If not, or your staying at a hotel, read on.

During my two week honeymoon, I stayed at seven different hotels. Different hotels affected me in different ways. Because I traveled with a tour group, and due to miscommunication, I didn’t know where I would be staying. If I had, I may have called the hotel in advance to ask about the laundry. Instead, I (sometimes) suffered. Some sheets irritated my skin and gave me raised bumps/hives. Others were great. If I could do it again, I would do two things- 1. Bring my own sheets 2. Wear very covered pajama, like a onesie. For the sheets, two very thin fabric should suffice- something you know you don’t react to. Best if there is print on one side so you stay consistent on which side touches your skin. As for pajamas, I like to sleep in just a over sized shirt, but I quickly learned to wear a leggings and long sleeved shirt to sleep.

Humidity
Depending on how your skin is doing, dryness of the lodging can be a problem. When we were at Boston, my skin was especially dry and the hotel was exacerbating the problem a lot. To combat that, we filled the tub with hottest water which acted as a humidifier. It worked well enough. In addition, I learned air at downtown Boston was actually pretty good for my skin (right next to water!) When I woke up going all dry, last thing I wanted was to go out, but going out was exactly what I needed! Encouraging partners are the best.

Packing
Bring a water bottle!! Staying hydrated is so important! Also, if you are like me and dislike unfiltered water, I’d recommend bringing a britta water filter. Get a smaller one, and you can stuff it with clothes, so it doesn’t really take that much space.
Clothes- layers, layers! Tsw makes your body temp be extra sensitive. You sweat a little and now you’re itchy, it’s a bit cold and now you’re freezing (I love the cold, but ymmv!) Always dress in layers and cater to your body’s needs!
Any supplement you need
Band aids, gauze, pantyliners for ooze
Any meds – if you normally go the natural route, traveling is the time to be more lenient. Take your sleep aid, antihistamines, etc so you can focus on your trip.

Food
Oh man, if you are on strict diet, you probably have to really plan your trip out. Destination will help a lot with diet. Example- Los Angeles will have all the vegan, gluten free, etc etc you can ever want. It’s more pricey though, unless you’re from not-US. Then you’ll think all the things are “so cheap!!!” However, if you go to form South or Mid-West, it’s going to be a lot harder finding these specialty restaurants. Also, most restaurants only want the food to taste good- meaning, it’s got lots of butter (which I don’t mind) and sugar (which I totally mind). When you just eat whatever during your trip, be prepared to be addicted to sugar when you come back home.

The million dollar question: Am I ready to go on traveling?
Only you can really answer that. However, if you are even thinking about traveling, chances are, you probably can handle it (maybe not a two week long, one week is a good length imo). For me. When I was at my worst, I couldn’t even fathom going outside of my room, let alone on a trip. Except to see my now husband. Love is a crazy strong motivator. If you are still flaking and shedding like crazy, I wouldn’t recommend traveling for you, since you won’t have total control over your lodging. However, I did go on weekend sleepovers during the thick of it… you don’t know what you’re capable of until you do it! (remember, love is a crazy strong motivator). You’re probably stronger than you think.

Month 9 update

5/20 I’m well into my second flare. Lots of scaly and scabby patches, some burning from the raw skin after itch sesh. Looking back on my photos and description, I think I’m similar to how I was month five. More incessant itch, oil where not affected, no real oozing, skin integrity is ok, no real red skin. My face is pretty dry, so is my neck, but the itchiest spots are behind my knees, arm pits, and inner elbow (aka spots I always had most problems with eczema). My legs in general is a mess though, as you will see. But still, not as bad it used to be, and as such I know I’m taking a step closer to heading.

5/23 I think I am finally over the hump! I’ll let you know how it goes. Less itchy and therefore less raw skin.

5/25 I finally took pictures! As you can see I’m very dry. It’s right but I can still function. I’m having a hard time sleeping during normal hours- I eventually get 8 or so hours but it’s broken or it’s during the day. I’m still itchy but less than before. Bottom half pictures coming later.

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Still on honeymoon – 8 months and 3 weeks

I’m back in the states! Canada was amazing, especially the French Canada region. It was so weird being surrounded by a language I don’t understand – I’ve never done that before. But most spoke fluent English so we got away easy.

My skin is still flaring – it never returned to how it was. But the skin moisture is back up which is a huge relief to me. Back in Boston (a week ago) it was drier than it’s been in months. The hotel was also incredibly dry which didn’t help. The city itself wasn’t too dry and it was beautiful!! Their seafood was also amazing. Loved the city so much.

Since then it got a bit better, but two days ago I just did all the wrong things for my skin and as a result I’ve been paying for it. It’s still not that bad- I mean I’m able to stay out all day and some nights walking all the time barely thinking about my skin. Actually today was the first time in a long time that I was itchy enough to stop and scratch for few seconds. I’m definitely itchier than I have been in a long time but not enough that it is hindering my trip. But I kind of deserve it. I’ve been naughty.

Two nights ago, I decided fuck it I’m going to go out and drink. This is in addition to all the absolutely crap salty (but mostly delicious) food I’ve been putting into my body (poutines anybody? Jerky? Msg galore in general?) While I hydrated through out the night, I was definitely tipsy/drunk. It was the best night ever though. Next morning I was drier. And the hotel we stayed in Toronto seemed to wash their sheets with detergents my skin especially didn’t like so it was irritated and bumpy, even before my alcohol consumption. Then we had to do laundry and only detergent available were the scented ones my skin doesn’t like. So further bumps and irritation. On top of the four reasons, I also just started my period which messes with my skin further. Oh well.

Despite that, I’m fully enjoying myself and not too concerned about my skin. It is still producing oil and skin integrity still seems to be good, which in my opinion, is the most important factors of healing. And not being itchy. And I’m not that itchy, and today’s been the worst day of this flare itch wise. Bumps are kind of spreading but the old ones cleared/are clearing up. So not exactly just spreading. It’s going away too.

Since I am still on my honeymoon, I don’t really feel like taking skin pictures aha. So I leave you with regular pictures.

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Boston scallops. SO GOOD UNF

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Niagara Falls. Breathtaking.

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Rock and roll hall of fame, Cleveland

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Super cool melody producing xylophone like swing in Montreal

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Beautiful cathedral in Quebec

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Another beautiful cathedral in Montreal

That’s it for now. Tomorrow I head to Chicago and I AM SO EXCITED!! Happy healing everybody- I hope you all find relief soon.

Honeymoon!

Hello everybody!
I will be slow in my responses as I’m now in my honeymoon! The patches are still there it may have gotten even a bit bigger, but it’s not itchy or painful enough that I think it’ll be too troublesome. It’s generally going to be cool weather which should help as well. Plane ride was definitely drying, but I drank lots of water and oj and it was fine!

It’s past midnight here in NYC, and we have to get up early so I bid you goodnight!