4 years, 1 month and 17 freaking days.
Yeah I really can’t believe it. To be honest I have no idea where time went. After my last post I was doing well. Then I got a flare and I kinda had to suck all my energy in to deal with it. I wasn’t very good this round with photos. So apologies for the inconsistency of them all. I was so disheartened even knowing this could and most likely would happen. But I did what I usually do and just soldiered on.
This flare was very challenging. It lasted quite a few months and it is still not through. I soaked in epsom salts every day for hours and that was the only thing that really helped. I am doing much better but goddamn these photos are scary. So. are you ready?
Gonna be a long post as I have a lot of catching up to do!
My belly became very flaky and patchy which was better than a full blown wound.
So my arms copped it really bad. And I had them bandaged as the weeping was insane. Such an angry photo.
I also got these little splits in my joints behind my knees. That was new. Walking became a nightmare.
Look at my long leg hairs that I have not touched for a year due to not caring.
Weird angle I know.
I don’t know why I couldn’t find any older photos of this flare, must have disappeared into the abyss of my cameral roll. It was much worse than this though.
So my neck was the hardest to deal with. Sleeping was pretty much nonexistent as lying down made it all hot and itchy.
Neck is better but it kinda moved to my shoulder.
My eyebrows fell out 😦
Okay so face is also tons better and I don’t really need that little bandage. It’s just a little red patch BUT I wear glassed and if I don’t put it there it rubs on my poor cheek and makes it worse.
Also kinda unrelated to TSW but a couple of months ago, right above my belly, I started getting this patch of boils. I was the most painful thing ever and I think it was a carbuncle? Anyway for a few days I was on the ibuprofen as nothing else would help. it was excruciating! And this is coming from someone who is no stranger to pain. I’m talking throbbing ‘please don’t talk to me or make me move’ pain. I ended up having to just wait it out and let it run its course. I took a photo after it had kinda deflated and this was after a shower. So weird.
It’s doing much better now.
Seriously at this point I was just throwing my hands up like ‘why this happen to me?’ haha.
Ahh such a mess I know. So more news is that I saw a new doctor. A really great doctor. One who not only knew of TSW but has actually been through it herself! I was amazed. I was relieved. To have confirmation that I am in fact not a crazy person and that everything I have been through so far hasn’t been for nothing.
She also gave me some great advice. A few months ago I started to use moisturiser again after a few years of nothing. My skin took to it well and I kept that up. However I recently noticed that I began to get very dry and flaky if I didn’t do it often enough. To the point where I had to apply it around 3 times a day. When I mentioned this to the doc she said my skin was beginning to rely on it and create a dependency on it. Fml moisturiser withdrawal round 2 guys. Even though I have been through this before I forgot how hard it is. That’s why in the photos my skin is so dry. Ugh a setback but at least I’m on the right track now.
She also said diet is very important. She said one of the most important things to avoid are sulphites. Which is a preservative in foods. To be more precise, preservative 220-228. I won’t go into detail about this as this blog was always about my own experiences and not a source of information (I am not qualified for that!). So no alcohol for sure!
I walked out of her office feeling so much lighter. I would have happily paid her fee doubled.
So yeah. That’s what I’ve been up to.
Battle on I suppose.