My week in review

It’s been a pretty painful week, with a fair amount of napping and a lot of self pity. 

Things were improving day by day all be it very slowly. But Saturday, I decided to be a bit of a rebel and go out in the car, for a little road trip to Bude, where Dan had promised to help his boss, with a large pane of glass. 

Dad, Dan’s boss and another of Dan’s work colleagues were there also and Kye and I sat and watched as they manoeuvred this huge pane of glass up onto this porch roof and in through a window there, where they then manhandled it out of sight, to become a posh balustrade. 

I thought I had found a good position in the car, where I was leaning slightly to one side. As my Crohn’s really doesn’t like me sitting up straight right now, but it became apparent pretty quickly that I’d made a terrible error and I’ve been paying for it the rest of the weekend, with agonising stomach and back pain, so bad, I’m been tempted more than once to head for the hospital, but I braved it out and as I get periods where it eases a little, I’ve managed to cope with it. 

Friday I got a lovely little care package arrive in the post in the form of a dot-to-dot book and a mixed puzzle book from Sammy. I love her little care packages and she has been smothering me in love since I got poorly, bless her. I’ve had all sorts, folic acid and b12 tablets, when my folic acid from the doctor was taking a long time to arrive, lots of bottles of Lucozade apple blast when my energy was really low, Manuka Honey and antibacterial hand gel, when she was freaking out about my risk of infection due to my lowered immune system, and so much more besides. 

I’m incredibly lucky to have her as a friend, and so grateful for all her support, not just throughout my latest health issues, but throughout my whole life. 

I hope you are all as lucky as me and have Sammy’s of your own. And no you can’t have mine. Sorry, not sorry! 

We also had a monumental moment this week. When Tiz and Mia sat next to each other, willingly on the cat scratching post. It might not seem a big deal, but trust me it is, these two hate each other’s guts. They must have been in a pretty amicable mood all round, as they even let Nibz stay near and they all hate Nibz. Mind you he does like to pounce on them all. 

Today, I had a go at putting my wig on all by myself. My hair had stopped coming out for about a week or two, so I thought perhaps it had just been a temporary thing, but sadly noticed it was coming out again on Saturday. Grrr! 

I’ve been wanting to try putting my wig on since my wig glue arrived at the start of the week but hadn’t felt well enough. But I had a little break in the pain today and decided to go for it. Pretty sure the wig glue is just PVA glue though lol. It looks like it, acts like it and well I didn’t sniff it, cause well you know, but yeah pretty sure we just paid for over priced PVA lol

Either way it did work to hold the wig in place at the front and that’s all that matters. Although trying to get it out of my hair is proving a challenge. But as I said to Dan, perhaps it will help stop it falling out lol if only for a while. 

I think I did alright, although I have to find a better way of putting my real hair up underneath as there was a bit of a bump at the rear lol. 

But practice makes perfect, right?

What else, Dan treated me to scampi fries, omg I love those. So a crummy! 

And today I had a memory come up of Millie when we first got her 3 years ago. Every time I see a picture of her when we first got her it amazes me the difference between then and now. She was so skinny and timid and her coat was a mess. 

You’ll have to forgive Kye’s ripped jean, I had a hell of a time getting him to stop wearing them and throw them away. One of the many joys of his autism. 

Anywho, look at the difference, time and lots of tender loving care has made to our beautiful Millie Moo. 

Well I think that’s pretty much it for this week, so love and hugs from us and as always, stay healthy, cause the alternative sucks xxx

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. 

And I’ve been doing a lot of drawing! 

Harley and Nibz (the cat) are complete but hooch still needs a bit more work. (The rottie) 

Well that’s all for now, I’m sure I have missed loads of stuff but if you have any questions feel free to ask and I will do my best to answer them. 

Love and hugs, as always 

Joss xx