dreaming of publication: It’s been a long time

Sunday, 20 September 2020

It’s been a long time

It’s been a while since I posted, I’m not gonna fob you off with loads of excuses, the reality is, I just didn’t feel like it and wanted a break from blogging. I didn’t expect it to be quite so long a break, but that’s life I guess.

So what’s new, well I recently received a diagnosis of Crohn’s disease, that’s been interested.

I’ve spend more time at the doctors and hospital than I ever imagined I could, or would, and am currently on loading doses of Infliximab, it’s not a very nice drug and is making my hair fall out.

That’s probably been the most distressing part for me so far, but I am slowly coming to terms with it and have purchased a really pretty wig, to hide the damage and in a lovely pale pinky purple, purple being the fight colours or awareness colour for Crohn’s.

I find myself with a lot of time where I don’t have the energy to do much, so have plenty of reading time again, so I’ll be reading and reviewing books on here again. As well as using it as a place to vent about my health, because we all need to vent sometimes.

My next infusion is Tuesday, this will be my third infusion and after this one the next will be in 8 weeks time and then I’ll have them every 8 weeks. The loading doses which is what I am currently on, are a bit different. They go week 0, week 2 and week 6, which is the one on Tuesday and then we get onto the every 8 weeks routine.

The infusions are okay, I feel a bit tired afterwards and get some muscle weakness but that only last a few days and I am told once it starts working, which can take a while, it will make a huge difference to how I am feeling, which I really hope is true because the pain isn’t much fun right now.

We’ve got a couple of new family members, Millie our little rescue Cairn terrier, she’s the most amazing girl, so loving and cuddly but a little weirdo lol

And Mr Tweets aka Tweeters who is a little canary, he’s so sweet!

Sadly we also lost my Harley de, he was 18 when he passed and it broke my heart as he has been with me all his life, even before he was born, as his mummy was a part of our family. I was devastated as he was my world.

We’ve still been doing our vintage rallies with our miniature steam engine, Trampie aka dotty. Except for this year of course what with COVID.

I’ve lost a LOT of weight dropping from 38 stone to 21 stone. Still away to go but the one plus of Crohn’s lol. Although it wasn’t all Crohn’s, I did work pretty hard myself cutting out all the junk.

Sadly, thanks to Crohn’s I still get a puffy face sometimes, which sucks. But I only get this some

Of the time and hopefully the more weight I lose the less it’ll bug me. Fingers crossed.

And I’m no longer a smoker!!! Check me out. Okay so it wasn’t really by choice, again the Crohn’s, but still smoke free. And loving it.

We also have a new caravan, this time with a fixed bed, sooooo much easier! And we love it.

Kye is doing great and has now been diagnosed with CU and Aspergers. But knowing what is going on has been so amazing and has meant we have finally been able to get a handle on his conditions and help him to manage them.

He’ll be turning 14 next week, how crazy is that!

Dan is great too, he has been helping my friend Sam with renovations at her charity, hilltop animal haven. They had to sell the main house in order to keep the charity going so he helped her clear land, put in a septic tank, solar panels and a wind turbine and situate two static’s for her, one for her, the dogs and birds to live in and one for all the cats.

It was a long project and a lot of work but she is all moved in now with the animals and they are all doing great. And he did all that with rushing me too and from hospital and doctors appointments, he’s such an amazing and caring guy.