My week in review.

     First things first, apologies for missing a week in review over Christmas, but like most people I was busy enjoying myself. This this will be two weeks in review lol. 

    We had a lovely Christmas, despite restrictions, and I got some amazing pressies. Including of course my new laptop which was an early Christmas present, I also got a new electric wheelchair. I have been wanting one for so long, so I can get myself around the shops and hospital without poor Dan having to push me. Dan even spent the first part of his Christmas holiday getting rid of some surface rust on it and repainting it for me in a lovely and very bright shade of pink lol. What do you think? 

    I wasn't the only one to get a fun new toy though, as I couldn't get Dan's car I got him a new toy also. Something he really wanted, the worlds fuggliest mini tractor. Which I have named, Fugly. 

    As well as my new toys, I also got a lovely cast iron hand crafted rose from Dan which is beautiful and so detailed and a unicorn ornament. 

    And a whole host of wonderful things from friends and family, including two awesome Christmas hats, one a pixie hat and one a hand knitted beanie, and its pink!!! I lovely little hand made bag, some lip gloss, a face mask, and cute bare of soap, a nice new top and bracelet, some awesome pink and white fluffy socks, a box of celebrations and a cute little note book with things to remember written on the front. 

    And this year I got and extra special surprise, as for the first year ever, Kye brought me a present using his own money and completely of his own choice. And it was a great choice as he got me a diamond art kit, of Lady and the Tramp. I have been wanting to have a go at Diamond art for ages. and I love it. 

    We had a hell of a day leading up to Christmas, when we went to collect Dan's present from Dorset. That was a nightmare. The drive up there was nice, but when we got there the guy said he was running later, due to traffic and was going to be an hour and a half late. 

    It seemed strange that someone would go off somewhere, when they knew someone was coming all the way from Cornwall to have a look at something they were selling, but we figured he may have had an emergency or just figured he would be back in plenty of time. So we weren't to bother and went and sat watching people getting soaked by waves, breaking over the sea wall, down at the beach. And the kittiwakes flying around. It was really nice actually 

    But after an hour and a half had passed and we went back to this guys lock up there was still no sign of him and Dan tried messaging him again, but there was no reply. But as we knew he was driving that didn't worry us to much. 

    So another hour passes and we get a message saying he is 5 minutes away, and shortly after that the guys father turns up, and he lets Dan in to have a look, but he finds the tractor buried under pile and piles of stuff. So they have to dig it out first, they do that and Dan does his thing and still this guy is nowhere to be seen. 

    But Dan is happy with the tractor so he gets it loaded and then stands chatting to this guys Dad, still waiting for this bloke. And at this point it's about the time we had calculated that we would be back home. 

    When the guy finally show up, he won't stop talking. Now, Kye and I have stayed in the car, seeing as I am meant to be self isolating and Dan has been keeping his distance from the bloke and his mask on, so we're getting pretty bored by this point and Kye keeps telling me is hungry. But all I have in my bag is some mints, so I keep passing him mints and praying for Dan to hurry up. 

    Then I hear this guy start talking about all the places he has been. London, Kent, all places in Tier one and boasting about how he got a load of stuff cheap because people wanted rid but knew people weren't going to be wanting to go into tier one, so were putting stuff up cheap to get rid. 

    And I hear Dan go "but I asked you if you had been following the rules and staying in tier two before I came, and told you that my wife has a compromised immune system so we had to be really careful and you said that you had been following the rules."

    And the guy was like "Yeah and I had, until today." Dan was fuming, but thankfully he had been keeping his distance from the guy and wearing his mask and he uses this as his excuse to finally get out of their. 

    But who does that, really. Tell's someone they have been careful and following the rules and then goes off up into tier 4, like that. 

    

    Anyway, we didn't get home till late, but stopped for McDonalds, to sort out all our hunger pangs. I was so relieved to get out the car though, I had only got out once while we were out, just to stretch my legs, as it was only while we were waiting at the guys lockup that there were no people about, so it felt safe too. So I had serious numb bum.

    

    But at least the journey itself went okay, though we were going through a lot of flooded areas, and the rain, fog and wind were really bad on the way home. With loads of branches and things brought down when we were really close to home and one massive one right on a corner, that we didn't have time to swerve. Thankfully our 4x4 went over it okay, though the trailer dragged it a good way. But that meant it was safely out of the way of anything else coming round the bend and Dan was able to stop and drag it out the road. God know what would have happened, had a smaller car come around the bend and hit it first. 

    but anyway, Christmas was lovely, we spent it at home just the three of us, of course. And then Dan spent most of the holiday out playing with fugly, so he was happy, but we still watched a lot of christmassy and non christmassy films together and played some games. 

    

    Then New years eve we got a bit of surprise. Will call it a surprise injection of cash. Which means, we now have enough for our new car, although we are gonna save a little bit longer, just so we can get a really nice one. But that's okay as it takes Dan ages to decided exactly what he wants anyway. 

    In other news, I am nearly off of the steroids and already I am having pain. So that's not looking good at the moment. but my next infusion is next week, and I have heard people say they start to get some pain a couple of weeks before an infusion is due, so I am hoping that's all it is and it doesn't mean the infusions still aren't working. But I will have to contact my team today and let them know and the dietician to get my liquid diet sorted. Which they said I would need to do if I started flaring again. 

    I have also got another new wig. This one looks more like my natural hair, for when I want to feel more like myself. What do you think? 

    Well that's pretty much it from me, I hope you all had a lovely Christmas and that this year will be better for everyone. Once they get all this covid stuff under control of course. 

love and hugs all

Joss xxx 

    

My week in review

Little bit late with this one but it has been one hell of a week. 

So first off the biggest feature of this week was pain. Lots and lots of it. The stricture was still giving me hell, but the pain was so bad my doctor was convinced it was more than just that so Friday I was rushed in for an emergency blood test to find my inflammation levels were through the roof. 

Bye bye remission. So I’m now back on the full course of steroids and the strong antibiotics. 

My week had mostly been about trying to stand the pain and not cave in and head to the hospital for lots and lots of lovely morphine on tap. 

COVID is thankfully helping me stay at home too, as my head nurse is trusting me to decide what I can cope with, so as not to put my weakened immune system in the firing line. Although I’m sure they’d do everything possible to keep me safe should I have to go in. 

Now I just have to hope the steroids and antibiotics do their job. 

They’ll also be looking at what effect if any the Infliximab is having beyond making my hair fall out and if it isn’t working, changing me to a different Chemo drug. Oh I wonder what delightful poison they have lined up for me next. They’ll also be putting me on a complete liquid diet, at least they will give the dietician ever gets around to actually ringing me. 

In other news my lovely loopy lu aka Ludo turned 9 on Friday!!!!!

Here he is strangling his sister. We got him a cute little oinking pig, a brand spanking new chicken ball, his fav toy, which has started to look a bit flat lately, and lots of yummy treats. 

He was absolutely made up with it all, and the pigs oinking is marginally less offence to the ears than the squickers. 

Here’s Ludo the day after we got him. 

This ones when he just started going out for walks

Him being his little old crazy self. Wearing his sisters bows and being absolutely over joyed about it.

And his old chicken ball, with him sneaking to grab it when I was trying to get a pic. It doesn’t look this healthy anymore. (The new one is late in arriving grrr , hence this old picture of his old chicken ball) but I know he’ll be made up once it decides to arrive. 

And here’s his new pig. 

He used to get a lot more toys on birthdays and such but Dan gets grumpy if I buy too many now as he says he has more than enough. Problem is Ludo isn’t really destructive with his toys, so once he has them they tend to last a very long time, until general wear and tear takes them out. 

Tweeters also got some new toys, not because it was his birthday, we don’t actually know when his birthday is, but just because I saw them and thought what the heck. 

A guy/gal on eBay was selling a bundle of birdie toys and a fish tank net, what a fish tank net has to do with birds I don’t know, tweeters would be most disgruntled if I tried to net him with that, but any £4 for this lot, what a bargain. 

I mean there are way to many to fit in his cage in one go, I know I tried, but still we can chop and change every wit and trip for a bit of diversity. I mean I’m sure even canaries get bored with the same old toys all the time.

Shopping has been a big feature of this week, I mean what else can you do when your on complete bed rest. Mostly though I have been sticking to stuff I actually need. Like a whole load of new clothes, because all my other ones are hanging off me, thank to all the weight loss. The one plus point of Crohns’s!

So new tops, trousers, jumpers, cardies and knickers. And OMG I needed the knickers so bad the only thing keeping the old ones up anymore was the crutch of my trousers. It’s a good thing I’m not a skirt wearer or I’d have been in trouble. 

Did I tell you about the time I flashed the Asda delivery man, scarred him for life. There he is going about his business and suddenly there’s a middle aged fat lady dropping her trousers and flashing him. 

I mean to be fair it wasn’t intentional, I just forgot to hold onto them as I stood up, and next thing I knew they were round me ankles. I was mortified. You’ve never seen a fat person move so fast I can tell you. 

That was the first time I accepted defeat and decided it was time for some smaller outfits. 

Any who, it’s been going okay, accept when that cow bag snuck in and last minute bidded me out of the cutest top ever. There were some choice words spat out  then I can tell you. I’ll give her her dues though, woman most have nerves as steel cause I held out till 8 seconds was left on the clock before chucking mine in, she must have been sat there till there was just 2 seconds left on the clock or something. Now that’s bulls. 

Still doesn’t stop me hoping she’s got a fat neck and it chokes her as she try’s to get it on though. I mean I don’t wish it bad enough that she dies or anything, just enough that she regrets the purchase and resells it. I’m not a complete savage ya know. 

Have you ever had that happen to you though, on something you really really wanted on EBay? It absolutely sucks!

What else? Dan went to try and get an exhaust of the doner car at the weekend. Only to find the one on the doner car was more rotten than ours lol. 

So he’s been on eBay looking for a new or second hand one, whatever he can find really that won’t completely break the bank. 

Other than the panel that got smacked up by the hit and run guy, that’s the only bit left to replace on the car now. But Dan still wants to sell it once he’s got those bits done :( men have no loyalty. 

I love our car, it’s the best one we’ve had but men always get bored and want new toys don’t they. They’ll be tears when he does sell it, mine of course. 

He wants to get a pickup truck next, I’m not keen. It’ll be a double cab, but I’m still not keen. I like out regular four by four. 

Our regular 4x4 for those who don’t know. 

If you like it watch this space as it’ll be for sale soon. He’s had loads of work done to him, all the rotten metal replaced and so much more besides. So you’ll get a good few years out of him. And make me very jealous lol. 

Well I think that’s pretty much it for this weeks, week in review, stay safe and healthy all.

Love and hugs

Joss xxx 

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

Health check

It’s been a rough few days, I have a pretty bad impaction and have been told it may be an intestinal stricture. It feels like my insides are twisting and the pain is awful. 

I’ve been dosing myself up with laxatives hoping to flush it through but so far, have had no luck. 

My energy levels are incredibly low. So much so I will probably need to nap soon. As I write this I am struggling to keep my eyes open.

This is the most tired I have felt since Tuesday and my actual infusion. I’m not sure why, as I work at 5am and that’s only half an hour earlier than normal. 

The weather here is awful, poring rain and pretty cold. I do not envy Dan having to be our in it. 

People have also started panic buying again, I guess they are all worrying that another lockdown is coming.

I think they may be right. 

Well i’m off to snooze.

Love and hugs Joss. Xxx

Preparing for infusion day

So tomorrow is infusion day, this will be my third infusion of Infliximab. I’m not feeling so far today. I’ve got a lot of stomach pain and noise and I’m feeling pretty tired. 

My prep day is usually spent making sure I’m all ready for tomorrow. For me this means picking out what I want to wear. It needs to be a top with sleeves that can be rolled up comfortable or no sleeves and a cardigan or something that can be easily removed on cold days, once I get to my infusion. 

I’ve worn my fav top for the last two infusions which is a nice loose fitting top with a star on it, which I can roll the sleeves up on real easy. But I’m feeling like this time I need to wear something different, as I don’t want them thinking I just live in that top lol. 

I also need to make sure my power bank, phone and kindle are charged, seeing as I am currently reading a book on my kindle. 

My power bank is largely a back up because my phone battery burns up quickly when I am using 3G or 4G a lot. 

I also try to get anything done, like replying to any of my penpals, before the infusion, as I can be too tired for a few days after, to be able to do this, at least with out loads of spelling mistakes and me constantly repeating myself, damn mind fog. Currently I just have one reply to do so that’s not too bad. Although I’m not sure it will go all that better today, than tomorrow given how tired I am at present, but I’ll give it a go. 

And of course housework, gotta get that all caught up. Again not too bad, the kitchen just needs a once over, and I want to clean out tweeters cage and  all his perches, that was meant to be done yesterday but I was not doing well yesterday for pain, so gotta make sure it gets done today, not that it’s filthy or anything but I just find it easier to do it when it’s only needing a light clean, because if I only did it as often as they say you are meant to, it would be so much harder. 

See they say you only need to change the sheet once a week and do a whole cage clean and disinfect once a month. Where as I do the whole thing once a week, because it makes it really quick and easy to do. Which is a must for me. So two fairly easy cleaning jobs to do, I’ve miraculously managed to get ahead of the game for once. 

I keep debating whether I should do the shopping today or not as well, we order online from Asda and this needs to be done by 10pm tomorrow or I lose my delivery slot. I hate doing the online shop, so probably better to do it today, than tomorrow, just to get it over and done with. 

My appointment is a morning one, so I don’t have much time to get things done before. Especially as it takes almost an hour to get to the hospital. 

I need to try and drink plenty of water today too, as this apparently makes it easier for them to get a vain, when they put the cannula in.

Although so far they have been great at that, getting it first time, every time. But I guess they do a lot of them on a daily basis, so must be pretty skilled at it. 

I also need to write up my little list of things I need to discuss with them so I don’t forget. Main thing at the moment is how rapidly my hair is falling out. 

I’ve also been getting a weird rash on my face, normally it’s worse on my cheeks and they get very hot. But I think that’s about it this time. 

I woke up this morning with my tongue all peeling again too. It’s so gross! 

Since I started the Infliximab I get this a lot. I already discussed that with them though. 

So that’s the plan for today. That and to try not to nap, I hate napping, I feel like I am wasting so much of my day when I do. And it takes me so long to work through everything as I’m so bloody slow now I can’t afford to waste any time. 

I also want to try and get a couple of quarts read on my current read, The dressmakers gift, by Fiona Valpy, as I’ve been approved for my first Netgalley requested book,  The moon is missing, by Jenni Ogden. 

With Netgalley you have to build up a good rep, for reading and reviewing books quickly if you want to get accepted for more. So as I haven’t used it for a while, I need to build mine back up again. I was pleasantly surprised to find that I did still get accepted for a book I had requested only yesterday, so quickly. I thought I might get a few rejections first, given my inactivity. 

I felt really bad when told my friend about Netgalley back when I was using it a few years ago. As she requested a lot of books but never got accepted for a single one. 

She doesn’t blog or anything like that but she is an avid reader. So I’m not sure why she wasn’t accepted. 

Any who, I can’t keep wittering away here as I need to get started on my prep. 

Have fun all,

Love and hugs Joss xx

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