This week’s blog is all about my trip to Poland and how my hand is covered in nasty Lupus Rashes.
I can’t believe it! We are officially a quarter of the way through 2023! Honestly, where is this year going?
Last weekend we were in Poland, celebrating one year married. We had such a lovely time! We spent our anniversary in the Tatra Mountains. We stayed in a lovely spa hotel. It was perfect!
Here are some photos from our anniversary:
The Wolf In Poland
The wolf was a bit up and down in Poland! He was pretty angry at the start of the trip. Luckily, he calmed down as the days went on. But annoyingly, I did have to change plans slightly on one of the days! I’m not complaining though, he could have been a lot worse, since I had upset him before we went with all the steroid dose changes. So I’m very grateful, I only had to change my plans for just one day and not more!
The day I had been at Auschwitz, I came back to the apartment. (By the way, if you haven’t been, you need to go and experience it! Just seeing the scale of it alone, is heartbreaking!) The plan was to drop the stuff off and head into Krakow for a bit of sightseeing. I got to the apartment and I felt so ill. Sometimes, I can force myself to keep going, but this particular day I couldn’t. Instead, I had to accept defeat by the wolf and rest. Alex went out and got some food for tea, and brought it back to the apartment. I couldn’t even just walk 10 minutes down the road for food. I could barely move my body. It was awful!
Pretty gutted, but sometimes, no matter how hard you try to fight back, sometimes you just can’t!
Luckily, the next day after some good rest, I felt a bit better. We had some spare time to explore Krakow and make up for the lost time, the previous day.
Here are some pics of Krakow:
My Lupus Rashes
My hand is currently a right mess! Covered in Lupus rashes, which are spreading, and getting bigger!
My dose of Hydroxychloroquine has currently been lowered, due to eye issues. Basically, until I’ve had further tests on my eyes at the eye hospital, my dose has to stay lower. We think it’s my illness attacking the muscles in my eyes. However, long-term use of Hydroxychloroquine can also cause damage to your eyes. So my consultant wants to stay on the side of caution, which I can understand and do agree with. But the problem is, Hydroxychloroquine is a great medication to help to prevent Lupus rashes. So being on a lower dose, I probably going to be suffering from a lot more rashes. Of cause, Lupus rashes are better than eye damage!
So this is probably why my hand is currently looking like this:
That’s it from me this weekend! There will be no blog next weekend as we are heading to Northumberland National Park with Casper, for Easter. I cannot wait!
Healthwise, I am doing so much better at the minute. Regarding tapering steroids, I’m having a break for a couple of months. I’ve had enough of being unwell! I just want a few months of a bit better health. I do want to try tapering my steroids again. I do want to try and get down to 5mg of Prednisolone for my own health, and my long-term future. But this year hasn’t been a great start! From being quite poorly with Covid back in December/all of January/beginning of February. Then problems with my eyes. Then having to taper steroids which then just flared everything up. Honestly, I need a break! It is mentally and physically hard when you are constantly fighting!
Have a wonderful Easter! đ
Goodbye for now
Emma
xox
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My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:
https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN
Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
