31st Jan 2025, An Adamts13, Rare Disease, Blip

As a way to make me eat the words in my last post, my Adamts13 took a bounce. Either over Christmas, or New Year, I picked up a nasty virus that left me with feeling shattered and with a cough. I was due a routine blood test and it showed my Adamts13 had fallen from above 100 to 23. I was called in for an emergency retest, and an appointment for Retuximab on standby. Thankfully it had risen to 84, without intervention. I'm proud of myself for staying as calm as I did, even though I did shed a tear when I put the phone down. A week later, my Adamts13 is back to above 100.

I had read that many people have an occasional bounce, and as I had had the virus, that seems exactly what this was. I'm grateful to the team for their prompt action, and their reassurance. I did feel safe in the hands. Goodness, I'm getting an old hand at this. Several years ago I would have been panicking.

Today we've walked along the sand, left out of place by recent storms. It's been quite a month.

❤️

Comments

31st October 2024, I'm A Halloween Grinch 🎃

I don't like Halloween. It's origins or the 21st Century version. Right from it's beginnings it has been about death and spirits of the dead. I always say I'm not superstitious, but somethings shouldn't be messed with. Halloween, or All Hallows Eve, has been turned from a Celtic tradition to ward off evil and spirits, to a commercial nightmare. I know that many will say that nowadays it's just a bit of fun, but like my fear of spiders, its maybe instinct. Maybe its the near death experiences that TTP survivors have, a little too close to home. Winter in this part of the world brings darkness and cold, something that the Celtic people took seriously. If any misfortune befell them in the winter, they likely didn't survive. For a while the Christian form of All Hallows Eve became a time when the poorest folk would beg at more wealthy folk’s doors for food, in return for offering prayers. Now children are encouraged to trick ...

21st October 2024, Newcastle, Gateshead, Angel of the North

This weekend away was not my choice but my husband's. To be fair I've had my weekends away and it was his turn. Of course, it involved football. BHA v Newcastle. It's on his list of dreams. What would my grandfather, a supporter, think of us flying to Newcastle to watch a match? We flew with Easyjet, cabin bags under our seats, and limited amount of cloths. I've never travelled for a weekend before knowing that I would need to wash undies. My meds (not TTP related) took up more space than my toiletries! We arrived exhausted, but driving would have been so much worse. We ignored our own travel tip and landed after sunset. It's disorienting to land in the dark when you have no idea where you are. Flight delayed at both ends, we took the Metro from the airport to the city centre, it was delayed en route, and then we left the station by the wrong exit. It resulted in us walking more t...

23rd September 2024 Apple Pies, Not Quite How Grandma Made Them 😉

I get a lot of recipe videos on my social media feeds. Many claim to be just how someone's Grandmother showed them. I often doubt it's true. I'm older, of course, so possibly I'm thinking of days from long ago. My Grandma, Nanny we called her, was born more than 100 years ago. She had a large family and undoubtedly did make pies, but I don't think they had desserts. She would have made pastry, she didn't have a fridge, and I have seen her cooker in a museum 🥰. Nanny had access to fresh veg because Grandad had an allotment and she kept her own hens and rabbits. She didn't leave a recipe book, but she left a healthy brood of children. The old apple tree in our garden has withered this year. Although it had buds, it didn't produce any blossom so no apples. We couldn't bring ourselves to remove it, and we'll give it another chance next spring. I do know it will be something of a miracle if it fruits again. My nei...

Porridge for Breakfast, The Ordinary Life of a TTP Survivor

Search This Blog