Month 10 update

Hello! By the time you see this, I will be on a plane to Australia!! Crazy! I will let you know how the plane affects me.

Month ten has been disappointing for me. I steadily got worse on the whole. Day to day conditions fluctuated, one day I was a bit better, next not as much, but in the whole not much improvement. Attempting to follow normal sleep cycle, sleeping with another body on a twin bed who is very bad at sleeping affected my ability to sleep as well. The last couple months of above was really detrimental to my ability to sleep. I can count on my hands the number of times I felt like I got good sleep. Considering how well I was doing with sleep before, I think I should probably go back to what I was doing. I’m sure lack of sleep doesn’t help with healing.

Another thing I think may affect my ability to heal is my expectations. I feel pressured, both by others and by myself, to act like I’m better – I’m ten months in, after all. However, upon looking back on my posts, I’m doing as well as month 5 or so. I’ll probably start lightly exercising regularly once I’m at Australia in hopes I’ll feel better and more energized. If you are going through topical steroid withdrawal while working (both in and out of house) full time, you deserve ALL THE PRAISES! I don’t know how you do it. Humans are strong creatures indeed.

I am really dry on my face and my neck. I oozed a little bit on my face and neck. Last few days I was careless and I ate whatever – gluten, dairy, sugar, msg, etc- and my skin was also worse. I think it’s correlated but we will know for sure once I go on really strict autoimmune protocol diet come October.

I started to take cod liver oil, l- glutamine and probiotic, but stopped after few days because I felt like I was doing worse. I will probably resume once I’m at Australia and things settle down. I know everybody says how awesome Sun is supposed to be, but for me the heat makes me inflamed and irritated. My skin- especially face and neck region- have been radiating heat again. Not as bad as first few months, but combined with southern California weather, I had to resort to ice packs here and there. I think Australian winter will help me feel better, as cold always did.

Pictures are from today, 6/23/14 right after a shower so I’m extra dry looking and inflamed.

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Edit: 6/25
I arrived at Melbourne!! Airplane messed with my skin big time! I wasn’t necessarily extra itchy but I was super super dry.

6/27 – last two days I’ve been shedding a lot, especially my face and neck but now my skin looks much better! I had about hour or two of minor flares in which I was burning a bit and was red but that subsided. Now skin looks better than before airplane! Pictures coming soon. My skin really likes the cold! It combats the burn big time.

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.