Hi, long time no speak!
Life has been sooooo busy lately! August has become a blur. But at the same time exciting. We are currently in the middle of renovating the kitchen. It’s been chaotic! Cooking tea on the living room floor, washing pots in the bath. But now we’re seeing light at the end of the tunnel. This weekend we’ve been tiling, a new skill I’ve learnt, and rather enjoying. Once the tiling is done, we can slowly move everything back into the kitchen, and start using the fancy new appliances we have, and say goodbye to cooking on the living room floor.
I will share photos in the coming weeks, once the kitchen is completed. đ
The Magical Solar Eclipse
In between all the kitchen renovations, I managed to get out and watch the magical solar eclipse. It was incredible! I hope you got to witness it too!
Of course, with my love for photography, I had to photograph it! But I didn’t want to spend silly money on a fancy solar filter for my camera that I’m going to only use once in my lifetime. So I left my camera at home (as hard as it was), and brought myself a cheaper solar filter for my iPhone.
Here’s what I captured:
The Wolf
Overall, the wolf has been kind lately. I’ve had a few up-and-down days. But considering the long days working on this kitchen renovation, things have been good.
I should disclaim, my dad has been doing our kitchen. And what a great job he’s done! My hubby, Alex, and I have been his little apprentices, helping him along the way. Honestly though, by helping him, we are learning sooooo much!
Pain in My Fingers
Even though my overall health has been good, I’ve been struggling with my fingers and pain when using them. Especially when I have to grab something; when I grip something, I get a lot of pain in my fingertips.
I’m not sure if it’s my lupus that’s causing it? Or if it’s down to my circulation and the consistent lack of blood flow to my fingertips. Overtime, it’s maybe done some damage to my nerves?
I don’t know, but it’s definitely something I need to mention to my hospital team when I next speak to them.
Even now, just typing away on my keyboard, I’m getting pins-and-needles and pain in my fingertips, which makes me think it’s more likely to do with my circulation.
Honestly, it’s making me sad. Things I used to be able to do without thinking, are now harder, and painful. But I’m trying not to let it upset me too much. Overall, I’m doing so much better than I was, just this time last year. And that, I’m very grateful for.
Overdue My Iloprost
Maybe my fingers are worse at the minute because I’m overdue my Iloprost? I was meant to be going in for it a couple of months ago now, but I’m not sure what’s happened. I know I probably should be chasing it, but it’s hard to chase something you really don’t want, even though you need it.
The thing is, I know that if, for instance, I went in for my Iloprost infusions next week, by mid-September, I’ll be needing it again. Honestly, it’s a lot to go through for very short benefit afterwards.
My friend, who was having Iloprost the other week, sent me the information leaflet that comes with the Iloprost vials. The long list of side effects there is, just shows you how horrible the treatment is. And looking through them all, I suffer with a fair view of them.
Here photos of the leaflet and the side effects:
That’s it from me this week.
Until next time,
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:
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
