Hope you’re all having a lovely weekend and the weather hasn’t been too miserable where you live! I feel like we’ve had a lack of Autumn sunshine this year!
It’s been a few weeks now since I’ve last written a blog. The first weekend I took off, we were meant to be away in the van but I was too ill so we stayed at home. The second weekend, again I was too ill and just didn’t have the strength to write a blog. So here we are three weeks later. I wish I had some good news, but I really don’t.
Honestly, things are pretty rubbish with the wolf at the minute!
Steroid Dose Changes
While I’ve been away from my blogs, I’ve had my steroids increased to 15mg for two weeks. Started to feel a lot better, dropped them down to 10mg, and anything has now flared back up again. Ideally, I need to go back up to 15mg, but I really don’t want to. Instead, I need my DMARDs (immunosuppressant medication) sorting!
Next week, thankfully I see my Rheumatologist. A new plan of treatment is going be be decided. I don’t know what decision he is going to make. I don’t know if it’s going to work. But all I can do is try and stay positive. Try and stay hopeful.
My Hands
My Lupus rashes on my hands are just not wanting to disappear! It’s so frustrating! Whereas the rashes on my face have healed nicely.
I was prescribed a cream called Elocon for my hands and an ointment called Tacrolimus for my face. Since the Tacrolimus had healed the rashes on my face nicely, I decided to try using that on my hands, as quite clearing Elocon was doing absolutely nothing. This a big mistake! It’s made my hands burn, become so sore, and chapped. Oh, and the rashes are still there! So all that pain for nothing!
Tacrolimus ointment is nasty stuff! It’s always left a burning feeling on my face after use, but on my hands is twice as bad!
Here’s a current photo of one of my hands with my Lupus rashes:
My Eyes
My eyes are still not great! My eyes are sore and bloodshot. Thankfully, my vision is fine, but I’m really not getting along with those Ciclosporin eye drops. They burn my eyes! I’m now using them every other night, to ease the side effects. My eyes have improved a little bit, but they’re still sore.
It’s frustrating, as I need them to keep the inflammation down in my eyes and to prevent the punctate spots from coming back on my cornea. It was the punctate spots that caused my vision problems in my eyes back in September.
P.S. That mark on my nose, I’m sure is caused by Tacrolimus ointment too!
The Van Is My Place Of Escape
Next weekend there will be no blog! We are planning on getting away in the van. It’s going to be the last chance this year. I think even if I’m too ill to do any walking, we will still go away. We can just chill in the van, or get out with the camera and do some photography, etc. I honestly think it will do me the world of good! Getting away in the van is a way of escaping life for me. It’s one of the only few places I can fully switch off from all the worries back at home. Right now, I need this more than anything!
A Dream Came True!
Ending this week’s blog on a happier note with something that very magically happened above my house on Bonfire Night. Something that still today, I cannot believe it!
For years, I’ve dreamt of the idea of seeing the Aurora dancing in my own back garden. Dreaming of what it would be like living in the north of Scotland, being able to step out in my very own garden, and seeing a wonderful show above.
Well, this dream happened, not in Scotland, but in Yorkshire! And the crazy thing is, I was just about to miss it!
I was in bed strolling on Socials, looking at everybody’s captures of the Aurora. My Aurora apps were pinging away, but I was like I’m too ill to go out for a drive into the country. I’m going to just have to accept I’m missing this one, as heartbreaking as it was! (I’m somebody who loves going out and chasing Aurora.)
I then started noticing people as far down as the Netherlands were capturing them. I was like hey, this isn’t normal, this is very strong Aurora! I climbed out of bed with my camera and headed to the back bedroom window, where I could see north. There’s a fair bit of light pollution where I live, so I didn’t get my hopes up too much.
It was there!!!!
My dream came true on 5th November 2023!
(Please note: photo is not my best as I didn’t have my tripod out and I do not have steady hands!)
Until next time,
Goodbye for now.
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
