It’s been 15 years, but my lupus is stubborn - it’s never gone into remission. HCQ, MTX, prednisolone and a boat load of painkillers worked well enough for a long time, but my disease activity is flaring badly atm. Probably the stress of my mums diagnosis, - it happened last time too. My dad has RA. He’s been on anti-TNF for donkey years now - he was in the original clinical study! It enabled him to work a physical job for 20 years when he couldn’t do his shirt up or bend to put his shoes on before. Magical medicines - absolutely wank diseases. I wish you many more good days than bad and optimal LFTs!
I have lupus and my consultants are going to try me on biologics/mabs - hydroxychloroquine damaged my eyesight and methotrexate damaged my liver. I’m pretty excited to try it!
Thank you for your kind words 🙂
Oh gosh, you’ve lost so much. I’m so sorry. Thank you for your advice, I appreciate it. We’re not the kinda of family that take lots of photos and never videos, but I’d already decided to capture as much of our remaining interactions as I could.
Have you heard of death cleaning? I’d never heard of the term before I came across this article by chance a few days ago. My mum has already started death cleaning without knowing it and although it felt weird and morbid at first, it’s honestly it’s been great. Every time I go over she gives me something of hers that she doesn’t use anymore - clothes, shoes, even body cream. With each gift we talk about when she got it or a special time she wore it. We’re making more memories by go over old memories, it’s beautiful. And I’ve made myself cry again…
Unfortunately she does carry the BRCA1 gene and I’ve already had stage one cervical cancer (now cured, thankfully). I’ve been referred to the cancer genetics clinic where I live, they’ll take my DNA in November and if I have it too we’ll discuss preventative mastectomies/hysterectomy then. I’m in my 30s. It’s a bit scary tbh.
She’s refused to take my hair. I lost mine when I first had chemo in my 20s and it was pretty traumatic. She said seeing me with no hair just so she can have it would make her even sadder. She’s just going to order the same NHS wig she had last time. My partners has the thickest hair that grows incredibly quickly. He offered to grow his hair out and donate it to her but she declined because she doesn’t like the colour 😅
I’m truly sorry you’ve lost both your mum and dad - and that you didn’t get “advanced warning” as I have. Do you have anything handwritten by your parents? I’m an embroidery artist. If you’d like me to make something with your parents writing on it (maybe for the children’s bedrooms?) I’d be more than happy to make it for you. Send me a DM if you’d like to do that.
Thank you again for your kindness x
Thank you! I was absolutely devastated when the cancer first came back and we realised how little time she had left. An extra 7 months is incredible! Now I’m trying to convince her to take my hair for a wig. It will make her so much happier when she loses hers again.
Same here. Our core values are the same, but our personal interests are very different. Our personalities are quite different too, but they’re complimentary. What one of us needs, the other can provide. We’re both better together.
This comment was a rollercoaster! Thank god crisis is adverted!
The great big hole is there either way!
Well I’m sold!
This is probably a stupid question but do they have running water? I assume they can use generators or solar if they’re not on the power grid, septic tank, satellite internet. But water seems tricky. And mail, but I guess you collect it from town. And how far is town? Surely an hours drive would be the limit of what’s reasonable?
No, I just particularly liked his comeback.
To echo another commenter… what? Seriously, what on earth are you talking about?