My week in review

Another week has passed and what a bloody week it’s been.

Tuesday, I had the surprise infusion where they upped my last dose of 5mgs per kg, to the new 10mgd per Kg by giving me a second 5mg per Kg. Hope that makes sense. 

I was warned there may be some worse side effects which, as they were doubling the dose made sense. The infusion itself was fine, I got Ed who I really like, he is very meticulous and careful and really nice to chat to.

He wasn’t sure if the cannula was in right at first, as it was flushing well, but didn’t really want to give him blood when he pulled back on the syringe, so he got someone to just check it. They were happy it was in and so they started putting the premeds in. This runs for about 10 minutes. 

Ed told me if there was any signs of a bump to give him a shout as he still wasn’t convinced it was in right, but it must have been cause no lump formed. 

After the premeds the Infliximab was started and I sat and read my book, occasionally stopping to respond to messages from Dan, Sammy and my mum asking how I was doing. I had the iPad as Dan had taken my mobile as he doesn’t get internet on his old brick of a work phone. So we swap over and I have the brick and the iPad, as I can connect to the hospitals WiFi and he has my phone so he can find things for him and Kye to do while they wait with its 4G.

This time that seemed to mainly involve stomping round shops trying to find me an affordable refurbished laptop (no luck there though) and hiding from sudden down pours, under a bridge lol. 

There bridge hidie hole lol

A very wet Kye hiding under the bridge.

A very wet Dan once they had made it back to the car.

Needless to say, I think I was having a better time in the warm, with my book, good conversation and a nice hot cup of coffee lol. 

Any who, everything was going well, the Infliximab part was done in two hours and then the flush, which is really just another ten mins of the premed bit, that’s got the steroids and antihistamines and all that jazz in it. And then the cannula needed to come out. Oh my days, let the fun begin!

So Ed starts to remove the cannula and he says to me before he does, ever had any problems when the cannula is taken out blood spurting etc. And I say, no. Because I never have before. Well the answer to that will no longer be no. Out comes the cannula and Ed is ready with a little square plaster, but not as ready as my vein I guess because blood starts squirting everywhere. Ed slaps the plaster on quick but within seconds blood is trickling out the side and then it blows and blood is spraying everywhere once more. I have never seen anything like it, and Ed is trying to get gauze out to cover it but of course it’s all in little packets that he’s got to get open as he is doing that, blood is spraying everywhere. That’s expensive blood too, because it’s full of expensive drugs. 

My medication on the new dose works out to be just under 1,500each time. I know, I asked. 

Anyway long story short Ed gets the gauze on and sits and waits, but when he goes to check the first time it’s still going so we wait some more. It’s quite awkward sitting there with someone holding gauze on your arm waiting for your rebellious vein to stop having a tantrum. 

Any who eventually it stops Ed cleans my arm up. “Hide the evidence” he jokes and then makes it clear that his biggest annoyance is that he managed to get the cannula in without bruising me, but has managed to bruise me taking it out lol. 

Once out of the hospital we went for a cheeky KFC, already having had McDonald’s for breakfast lol. Then headed for home. 

I was doing well feeling pretty awake, but had a pretty bad headache. 

Oh I forgot to tell you about my dad ringing. Well, he works with Dan so he rang Dan’s mobile to ask about one of the jobs they were doing but of course I had Dan’s mobile. So Dad and I chatted for a bit, you know him just asking how the infusion was going, if I was okay,  basic stuff and then I told him if he rings my mobile he will get Dan and carry on with my infusion. Well I guess he wasn’t able to ring Dan straight away because he rings back not long after I have got out of the hospital. It was quite funny hearing his shock when it’s me who answers the phone again lol. Any who, Dan pulled over so he could talk to Fan and then we went and got our lunch. The wait for Dan to finish talking to Dad was killing Kye lol. He had KFC on the brain. 

When we got home, I was really wobbly on my feet, I thought my walking stick would help, so grabbed that to help me get to the loo but oh my god, my arm was wobbling like crazy and I looked like a little old lady trying to get down the hall with my legs and arms shaking and the walking stick only highlighting the fact. 

But everything went well till we were in bed that night, Dan woke me up all worried asking if I was okay. I won’t lie I was baffled I had a headache but felt fine and couldn’t understand why he had waking me but he said I had had a seizure. 

It wasn’t the only one either, I had three in the night, small and they only lasted a few minutes each, but by the morning Dan looked like he hadn’t slept a wink, bless him. 

The next day mum came over to stay with me just to be safe. Her and Kye painted some Halloween rocks and played on Snapchat. I even got pulled into it. The Snapchat I mean. 

And she brought me a cute little keyring/ bag charm. 

But everything went fine no more seizures and I was starting to get a bit steadier on my feet. 

Then that night all hell broke out. Sammy had rung me earlier in the day to say, she called Dan because there were sparks coming off some of the wires in her shed, where all her turbine and solar battery controls and batteries are installed and Dan had told her to turn it all off.  Which had stopped that problem, but as the day went on she was ringing me more and more upset as the wind turbine was going crazy and rocking really bad in the wind. 

Then not long after mum left she rang me in a tight panic because one of the poles that holds the stabilising wires in for the turbine had come out the ground. 

Now I am not gonna lie, this was really her fault, as Dan had told her repeatedly that she had to cement those in before the wind got bad and I had reminded her of that too and she hadn’t done it. But what was making the situation worse was the wind turbine was making a right racket too. 

So when Dan finished work we rushed over there and there were all ready several other people there, friends and family, helping her keep the thing steady. And it was decided the best thing to do was cut it down. Now bare in mind it was really windy, so they ratcheted the pole to the trees and as they cut through the pole slowly pulled it toward the trees so it would come down safely away from the statics.

Now, the fact Sam hadn’t cemented the poles in was totally her fault but it’s like everything you intend to get to it and don’t and to be fair the weather did change very suddenly. The rest of it was not. The box had blown from being overloaded, but Sam hadn’t been running enough to do that. The whole set up came from the same company and it hasn’t worked right from the start. So was obviously a faulty unit. 

What was also stupid was once it was all turned off because of the sparking the turbine had no break so the thing was spinning violently out of control. Surely something like that should automatically lock on the breaks if for some reason you have to shut the system down. 

Especially as it is not an easy thing to bring down in strong winds. 

Anyhow, nightmare over, Sam is now safely rubbing off a generator and will be giving up her attempt at off grid living, for which we are all greatly relieved and will be going back on the grid. 

A lot of us did think it was a bad idea to begin with but she wanted to try it and I respect her for that. Cause I do think it was a brave thing to try to do. 

I won’t be fully happy though till she’s all connected. Lol.

And she is not the only one with issues this week. It seems our house as well as are car is falling apart. We had a flood a while back in fact several. As a neighbour had had dogs out to try and kill the rat infestation in his barn behind our house and pretty much drove all the rats into all the houses on our street, it was a nightmare and the rats kept chewing through the water pipes on the back of the dishwasher and washing machine in the night, meaning we woke up to the kitchen flooded more than once, while we were trying to get rid of the bloody things. Well the water sitting there for hours didn’t do the floor much good. We could of claimed on insurance but Dan didn’t want the price going up on the insurance so decide it was fine and he would fix it. 

Money though has been tight especially with me getting ill, and lockdown and the car needing loads of repairs. But the main floor is still pretty firm it was just  over by the back door that wasn’t fairing great. Yes well yesterday, I was heading out the back door and my foot went through the floor. There is a bloody big drop under our kitchen as we have a big crawl space. 

Thankfully I had one foot out and firmly on the steps outside. So I didn’t full right through. 

But there is a nice foot shaped hole now and no money to fix it and Dan is still loath to use the insurance cause he doesn’t want the premiums going up or something. 

And yes we have got insurance, I know cause I set it up. So it isn’t that we haven’t and he has just told me we have. I know how you lots suspicious minds work lol.

Problem with Dan is he can do these things himself if only we had the money and so he is loath to let anyone else do it. 

What else, Kye is still in a bad mood and I managed to find a laptop thanks to a lovely local company. But won’t get it till Thursday/Friday if even then now, what with lockdown. Although I am also wondering if I should cancel it anyway given we now need the money for a new floor. Even if Dan says he’s not letting me do that. 

It’s crazy because we have gone from being comfortable financially, to broke this year, so quickly too. 

I mean don’t get me wrong we’ve never had bags of savings but we were okay. And always had a bit aside. But with so many things going wrong at once and my body failing and all the hospital trips that’s all changed. 

We’ll get it figured out though we always do, it just might take a little minute and at least we own our own home out right and no mortgage. 

And we don’t do debt, so no credit cards or anything. So at least that something. When we need something we save for it and that’s what will do now too. 

So yeah that’s my crazy week. On a plus note I recovered really quickly from the infusion and I seem to recover quicker every time and I also feel like I have bags of energy which I am hoping is a good sign the Infliximab is now working. Only time will tell I guess.

So that’s it from me. I hope you are all well and safe and coping with the approach of another lockdown okay. 

Remember to stay safe and healthy cause the alternative sucks. 

Love and hugs

Joss xx

Health check

Wednesday was double that dose day. Where they gave me a second dose of Infliximab to up the old dose to the new level. 

It went okay, although when the cannula was removed blood started spraying out everywhere, I’ve never had that happen before. 

I felt a bit tired after, but not as bad as I normally do, so I think my body is finally starting to get used to this stuff. 

I was also quite wobbly on my feet much worse than normal. Even my walking stick which normally helps, did not, as my arms were so shaking trying to hold it still was impossible. Then yesterday afternoon I started feeling amazing, like I was full of energy, something I have not felt for a long time, is this the Infliximab actually working? 

The only problem was that if I moved to quickly I got dizzy and when I was getting too hyped up, a headache started. 

I had three seizures in the night after the infusion and poor Dan didn’t get a lot of sleep for worrying. 

But all in all I think I am doing okay. I was expecting to feel really drained for longer than normal because of the double dose, but it didn’t happen. 

Dan said that may be different next time as the full

Double dose is going in all at once but only time will tell I guess. 

Love and hugs joss xx and remember stay healthy cause the alternative sucks. Xxx

My week in review

So another week another blog post. It’s been a week of surprises, few of them good. My mother surprised us all with the sudden revelation that not only was she getting a puppy from Bulgaria but that it was here. 

Flashback to the last time she’d been considering the same and we all warned her off. Not because she would be bad for a pup but because the pup in question was bad for her. 

First of all it had come from a hoarding situation, where a lot of inbreeding had gone on, you know mother’s with son etc. 

Secondly mother isn’t rich and had just struggled to pay vet bills for the dog she already had. 

And thirdly the puppies legs were extremely bowed and clearly in need of surgery. Very expensive surgery. 

You see where I’m going with this right! So we managed to talk her out of that and the girl who had the pup ended up rehoming it to someone else when she found out just how much that surgery would cost. Without telling the new owners, although how all these people couldn’t tell just by looking at the dog is beyond me.

And why the hell this rescue didn’t fix it before rehoming it, is also beyond me and that is my problem with a lot of these rescues from abroad. Once they have dumped and I do mean dumped the pup or dog in a home many of them wash their hands of it. 

Anywho, opinion already really low of this particular rescue mother goes and gets a pup from them after all, and keeps it a secret. 

They lie about the breed claiming it is a chihuahua x, bollocks it’s blatantly a teacup jack Russell, even the foster said it’s clearly a terrier, but of course they see it as a chihuahua will be easier to rehome. How frigging irresponsible is the frigging rescue. 

And then the fosterer, so they give this pup to a woman who has to take the pup to the vets on multiple occasions because her dog attacked it. And not only attacked it but attacked it enough on multiple occasions to leave scars, SCARS!!!! And now they have given this woman another puppy to foster, I mean what the hell! 

And then the pup! I have met a lot of puppies in my life, including terrier puppies in fact I have even had a few myself. And all of them when little have loved people and go excited by people, but not this pup and from what mum told me before meeting him I was expecting him to be scared. He is not scared, he is indifferent. Couldn’t care less that there are people there and when he is forced to acknowledge them he is more likely to bite than he is to wag is tail. And that’s fine, poor guy was dumped in a dumpster at about 2 days old. He’s gonna have some issues. But when one of the issues is snapping with intent, at children, with no prior warning, such as a growl or raised lip. The best home for this pup is probably not one with a woman who has 14 grandkids some of them very young. 

In fact, a responsible rescue probably would have held back in rehoming this poor pup, until a behaviourist has worked with it. 

Mother as usual is in complete denial. Everything is just fine, including the fact that one of her other dogs, the sweetest little girl ever, is so petrified by this little snap fest that she will not set foot on the floor when it is out of its crate. Now that works for now, while it can’t get on the sofa but what about once it can. 

Now granted she may just need time and will eventually get more confident with it, but what if she doesn’t,  because this rescue has a habit of washing their hands of these dogs the second they have dumped them on some poor unsuspecting smuck. 

This shit has to stop, these rescues have to be regulated. Not that long ago two vans full of pups, brought over from abroad by one of these rescues, were found to have parvo, despite all of them having passport and medical records which said they were healthy to travel. 

Saving dogs from anywhere is amazing but for the animals sakes it has to be done right and the dogs have to be matched with the right owners and get any behavioural issues worked on prior to being placed in a home. 

Some of these rescues are very good and do everything right, but unfortunately a large percentage of them don’t and more and more British rescues are being filled up with these dogs when they are already bursting at the seams with puppy dogs from this country. And a lot of these rescues don’t vet homes properly either. Now I know Bristish rescues can be OTT about their vetting process but a lot of those bringing dogs over from abroad have gone the other way, and do no vetting at all. 

They also need to be honest with people, about the breeds where possible, about the dogs character or any issues they may have, and about the risk of health problems. And ensure that if they are not going to deal with medical issues themselves that they need to make this clear to new owners and explain that as they know little about the dogs background there is a higher risk of the animal having health issues. Especially if they know the dog has come from a situation where there was a lot of inbreeding. Because if someone is low income then they probably shouldn’t be getting one. And if that person isn’t prepared to think about that themselves, than a rescue should be. And given that the lady who runs this one already knows my mother struggled to get the money to pay for her dogs surgery that wasn’t even insanely expensive surgery, there is really no excuse. 

Anyway rant over. Needless to say only time will tell what the outcome will be but it’s not looking great and this poor pup is gonna bare the brunt of that. 

Moving on, health.

Well I got my antibiotics and steroids again as you know and am pleased to say that I am back in remission at least for now.

I am still yet to hear if the Infliximab is working which has left me a little confused, as my IBD team have decided to double my dose even though they say they have not had the results back for the Infliximab trough and antibodies tests they did, yet. 

They also say they want to do a follow up review and that I may be referred for surgical input. But don’t say if that is for the stricture, which I assumed was okay now as it seems to have stretched seeing as solid food seems able to pass easier now, or for the inflammation issue. 

So I’m feeling pretty confused right now. 

Also they want me to go for another infusion in the next two weeks, though I haven’t been given an exact date yet, at the same dose as my last dose, when I wasn’t meant to be having another infusion until the start of November. 

Why can’t this people be a little bit clearer about things and you know, like maybe say why they are doing it, instead of just a random letter that tells you what they are doing but not why?

Anyway day by day I guess. And at least for now I am out of pain which is a blessing cause I was really getting to my breaking point where the pain was concerned. Oh and no liquid diet now, well at least not for the moment anyway. Although they are keeping the referral open just encase that changes and it’s deemed I do need it after all.

Kye and I have been pre-decorating envelopes over the weekend to save time and having to buy stickers all the time. We’ve kept it simple with mainly Kawaii designs but I think they are coming out quite good. 

Some examples below. 

Other that still haven’t been up to a whole lot dew to having to stay in bed rest for another week yet. But that’s the joys of Crohn’s I guess. Hopefully I’ll have more exciting things to tell you about soon. 

Love and hugs Joss, and remember stay health cause the alternative sucks!! Xx

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 

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