Friday, 8 January 2021

My week in review

    So, it's been a rough week. I went down to just one a day on my steroids and I guess my infliximab still wasn't working, because I got really sick again. 
    And it was so fast this time. I'd been having just slight pains for a few days, and then by Wednesday, I was in so much pain and exhausted, and just struggling to keep anything down. Even the sips of water I was having, would come back up after a while, I guess once I got too much of it sloshing around in my stomach it just couldn't cope. 
    And my lips were so dry and cracked, it was awful. 
    In the end I rang Dan and begged him to come home from work. I just couldn't cope. 
   Well, I emailed my IBD Nurse, and she said I had to go for emergency blood tests at the doctors surgery and my heart broke. I honestly didn't think I could do it. And not because of the needles, I'm used to them now. But because with my back and stomach cramping, and constantly being sick, I knew the car ride was gonna be torture. 
    I felt so sorry for Dan, because I did not want to go. I just wanted to go to sleep and to be left alone, and he was trying to get me out the house and into the car, and I was just crying and begging him to let me sleep. 
    I was just so burned out and really didn't feel as if I could take anymore. I just wanted to curl up and die. 
     But of course Dan wasn't going to let that happen.
    So, he got me out to the car, with my sick bowl tucked under my chin, and Kye with my water bottle in the back, passing it forward to me whenever I could bare to take a sip. And all I kept thinking with every agonising bump in the road was, "We're not even there yet, and I still have to do this all the way home." While praying, that I wasn't sick at the doctors, with a mask over my face. 
    Thankfully, we made it there, and in and out, without me throwing up, we even go part of the way home before the vomit hit. 
    But omg when it hit, there was so much of it, and it just kept coming and burning my throat and my mouth, as it was so full of stomach acid, and poor Dan, he isn't great with sick, but he pulled over and was asking me if I was okay, and passing me tissue, but it just kept coming. And it was just all really watery and vile smelling stuff. 
    And when we got home, I was just on the sofa and out, I had nothing left to give. 
    After that things got a little bit easier. My IBD Nurse told me to try having some Jelly, as I might be able to keep that down easier than the water, and she was right, that worked. And then she gave me some tips on other things I might be able to keep down. So slowly I started to get a little bit more energy back, which made it easier to cope with the pain. 
    The next day my IBD team had a meeting and decided that I needed to come off the infliximab, that I wasn't reacting well to it, because of the all the hair loss, jaundice, seizures, migraines, rashes, chemical burns and well the list goes on and one, and as it didn't seem to be working anyway, it would be better to switch me to a new drug. 
    Humira. I was so happy. I have wanted to get off infliximab so bad, and I know Humira still has loads of nasty side effects too, but at least its injections that we can do at home, so Dan won't have to take days off work anymore, to take me to the hospital for infusions. 
    I can't start thought for about two weeks though, although my IBD Nurse said she will try to speed up the time it takes for them to get to me. 
    I won't lie I am a little bit nervous, because a lot of people say they hurt like hell, but it can't hurt worse than a flare, and if they work, it'll be worth it. 
    Although Dan might have to do the first few for me. 
    Then yesterday, I wanna say today, because I have been up all night with pain, and my body clock is all messed up, but anyway, yesterday my IBD Nurse got back to me with the blood results and they are not good. Really high inflammation again, so she got me an emergency prescription of antibiotics and steroids. Which I have to collect today. Although I still have steroids left over from the last lot, so I have already been able to get back on them. 
    She also said that if I get worse, I have to go straight to hospital, so I guess they are worried about sepsis again. 
    But I know I'll be okay, now, the steroids and antibiotics work really well and really fast, and then I just have to keep everything crossed that the Humira works., because I have really had enough for flares now. 
    I've also got the liquid diet coming from the dietician, so when I am flaring I can give my stomach a break and take some pressure of it, and hopefully won't get this sick again. 
   I'm on so many meds now though, and they are adding in B12 too. 
   But that's Crohn's life I guess. 

 This is what I am on now a day, and that's without the laxido,  my pain meds, of which I am currently taking many on a daily basis, and the B12 and the antibiotics that have got to be added in. Oh and the antihistamines, ( I hope that's the right name) That I stopped taking because they weren't stopping the itching, like they were supposed too. 

    On a happier note, my new wig came and it's great. It's as close as I could get to my normal hair all though its a light brown, because I couldn't find anything closer that looked like my hair style, but with a fringe as I was having problems with the pink one slipping back and showing my hair line. Although with the new one being so close to my real hair colour especially at the roots, it's hard to tell when my hair is showing anyway.  This is it...

And me wearing it the day before when my face was all swollen. 

    I also got a wig fix band, which is meant to help with the slipping too. I tried it for a little while and it does hold the wig more securely, I didn't even have to pin it. Although, this may be irrelevant now, as with the infliximab gone, my hair will hopefully come back. 
    I'm not sure if hair loss is a symptom of Humira or not, but if it is it must be less common because I don't remember seeing anyone talking about it in the Crohn's groups. 
    So fingers crossed. 
    But the wig fix, seemed super expensive for what it is. I mean £25 for a silicon head band with little nobbles all over it. Still needs must. 

    Well that's it from me, I hope you are all doing okay, and coping with the lockdown okay. If you need someone to rant to, feel free to rant to me, after all you have to listen to my rants all the time, so it only seems fair. 

Love and hugs 
Joss xxx

And remember to stay healthy, cause the alternative sucks. 


Sunday, 3 January 2021

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 

Sunday, 27 December 2020

Book thoughts: Say goodbye for now, by Catherine Ryan Hyde.

     It's the first day of the school holidays and Pete is off to the local lake to go fishing with his friend, when they come across an injured dog at the side of the road. Pete instantly feels compelled to help, but his friend does not, and so begins a journey that is about to change the lives of many. 

    Dr Lucy is a recluse, she keeps to herself, and has transferred her skills, into helping animals as well as people. She survives on an allowance from her ex, a little ingenuity and the odd, I'll ask no questions, so you tell no lies, patch up job, for those who've hurt themselves, doing the kind of Job, you don't want their to be records of. 

    Justin and Calvin are new to the neighbourhood. Calvin is working at the local plant in order to support his son, but this means, Justin has to keep himself occupied. When he see a boy pulling a little mini trailer with a rather large dog inside, his curiosity gets the better of him and they strike up a friendship in which the colour of Justin skin, becomes the catalyst for disaster. 

    On finishing this book, I just sat there for a moment, trying to process not only what I had read, but all the emotions that were flying around inside me. 

    The sadness and heartache faced by each of these characters, is devastating and I was so angry at a world that had made them have to suffer this way. 

    But of course we never learn. We continue to discriminate in different ways, never learning from the past, and atrocious crimes have been carried out all over the world, due simply to peoples differences. 

    In this book Catherine captures the horror and emotions behind these types of events perfectly and shows how much worse things were back in the 50's and 60's in America, compared with today. 

    Her characters are incredibly well developed and believable and as a result, I found myself deeply absorbed in their story and longing for everything to work out alright for all of them. 

   She takes you into a world of pain, hate, anger, fear and reminds us that no matter how much hatred  there is in the world, there are always pockets of kindness too.

    I loved this book from the very first page to the very last. And few books are able to effect me as deeply as this one did.  I would definitely be interested in reading more by this author in the future. 

    If you would like to check out the blurb or grab a copy for yourself, you can do so by clicking here, It's available in a whole host of formats, and if you have kindle unlimited, you can read this one for free. (Note this was the case at the posting of this blog post and may have change since) 

Monday, 21 December 2020

News in review.


So the biggest news of late, is Boris Johnson supposedly cancelling Christmas for, all those unlucky enough to be in Tier 4. Which happens to be an awful lot of my family. As the majority of those are Kent and a few in London too.

But first of all he hasn't really cancelled Christmas. Most of them can still have Christmas. They're just going to have to do it a bit differently this year. Really the only people it is cancelled for is though living alone. 

But people seem to be forgetting the true meaning of Christmas, it's above love, compassion, giving and understanding. 

Tier 4 has this new strain of Covid and it is really important that it is stopped from spreading. They are being asked to sacrifice, in order to save lives. 

And what was the response of a large percentage of the population. When asked to make this sacrifice. 
They fled. They packed their bags, ran for their cars, or train stations or bus stops and they did the exact thing they are being asked not to do. They fled to lower tiers, so they did not have to do what the government ask and instead will be doing exactly what the government didn't want.  They are spreading it all over the UK. 

So instead of containing it in one area and hopefully being able to stop it there, we will now have another nation wide pandemic on our hands and why. Because of selfish, spoiled people, who think they deserve to do whatever they want, no matter the consequences and there are some pretty massive consequences to this, because it can and will result in peoples deaths. 

But that's okay, as long as they get their Christmas. Who cares about anyone else or infecting the whole country. 

I think any transport companies that have allowed these people to travel should be fined. 
And anyone who left should be fined also. Because there are an awful lot of people who didn't. Who are still there, following the rules, and doing their bit and for nothing now, because all of the other selfish gits have made their sacrifice pointless. 

Now you might say oh well it's alright for you down in Cornwall, sitting pretty and having fun in Tier 1. But it isn't. 
Cornwall is one of the places where a lot of people from up there have second homes. After the last lockdown released we were swamped by holiday makers and we went from having hardly any cases, to cases popping up all over, especially very locally to me. 

As a result of that, I got locked down just as everyone else was getting out of the November Lockdown, because I have a compromised immune system due to the infusions. And the hospitals were and I guess still are worried about the sudden rise in infection. 

The reality is that some of us have no choice but to self isolate, because for us, getting Covid could mean the end. 

So please have some compassion, start doing what you are told, so we can get rid of this horrible disease sooner, rather than later and go back to having a life. 

love and hugs Joss xx .

Thursday, 17 December 2020

My week in review.


This week instead of talking about me I wanna talk about my husband. When People are sick, very few people stop to think about the people who are caring for them.
For me that is Dan, my husband, one of the most amazing men on the planet. 
I honestly don't know how I got so lucky to have a guy like him, he is kind, caring, works his arse off to make sure me and Kye have everything we need and a few things we don't really need but really wanted. 
He's out everyday, rain or shine, working out in the cold, doing a very physically demanding job and has been for a good 16 years or so. 
And it's taken his toll, his knees are bad, his back gives him jip, but he just keeps on keeping on. And has to be practically dying to miss a day. 
He does so many nice things for me and I wish there was something really special that I could do for him in return. Sadly I don't have the means. Because I know one of his biggest worries at the moment, besides me. Is being able to afford a new 4x4, as ours just keep having more and more problems. 
But this is what gets me. Even thought money is already extremely tight, and he knows in order to get our car through it's next MOT he is going to have to do shit loads of work. 
He didn't even hesitate when he saw and electric wheelchair for sale, that was cheap, I mean not cheap like a tenner, but cheap for the kind of wheelchair that it is. 
And he was like message them and arrange for me to go see it. 
And why? So I can go into my infusions without having to have a nurse push my chair, and having  to have a nurse bring me out. So that I can take my time to get my stuff together after they take my canula out and make my own way out. And so that when we go out round shops I don't have to feel guilty, because Dan has to push me. 
What did I do to get a guy like this. 
And I have wondered, if there were companies that might help me get him a new 4x4, but I don't think even with our story this year that there are. I mean Crohn's isn't one of those disease that gets all the kudos like cancer.
Most people don't even know what it is or what it entails to stay well. 
I just wish there was a magic want I could wave and make something nice happen for him for a change. the way he so often does for me. 
But life doesn't work like that does it. 
So instead all I can do is sing his praises everyday and hope for a miracle. A nice lottery win or something good that can help take just a little of the stress off of him. 
Why does life have to be so tough. 
And of course there are an awful lot of people struggling this year, not just financially but mentally too. Thanks to this bloody covid. 
So know this is a safe place where you can talk if you need to. I'm not sure how much help I can be, but I can listen, try to offer a few words or comfort. Cause we all need that in life, a bit of compassion. 
So feel free to email me, or leave a comment. 
My email is 
And I am here if you need me. 

love and hugs 
Joss xxx

Tuesday, 15 December 2020

Book thoughts: When I ran away by Ilona Bannister.


     Harry enters Gigi's life just as it's about to shatter, like the twin towers that have just been hit and are soon to fall. Fleeing from the devastation, only brief acquaintances, Gigi takes Harry to her home, to her brash mother and kind father, and comforts them all as they discover that Gigi's brother was in those towers and didn't make it out alive. 

    11 years later, a chance encounter brings Gigi and Harry together again and sparks instantly fly, but life is complicated. Gigi is raising someone else's child, and living in a run down apartment, struggling to make ends meet, while Harry is a wealthy business man with a pretty girlfriend, who makes Gigi look a right mess, but to Harry none of that matters. 

    Soon Gigi's whole life has changed, her and Johnny are moving to England, to live with Harry, who she married in a hurry and suddenly they have money, a beautiful home and another baby on the way, but is it enough? 

    This is a beautiful, raw, heart breaking, emotional rollercoaster of a book. That deals with the difficult subject of postnatal depressing in a way that is astounding. I heart bled for Gigi, as she flees her family and desperately tries to wrestle with her emotions. 

    How she deals with the people around her and their responses and expectancies of her as a mother, their judgements and attempts to prove their own worth as mothers. It shows how often, instead of lifting each other up as women should, we often shoot each other down in order to justify our own choices and actions. 

    This book is deep, raw and for anyone who has suffered any kind of depression, PTSD or Anxiety, it is incredibly enlightening. Because it shows that you are not alone, that others feel this way too, and that life is tough. 

    Ilona has an amazing talent with words and it is as if she has cracked open the thought patterns of those struggling in this life and emptied them out onto the page in a beautiful way, that will make you cry, cringe, laugh and long for her characters and connect you to the story in away that other books cannot. 

    I cannot recommend this book enough, especially for any of you out there who have struggled, whether mothers or not. And I also recommend it for everyone else too. So they can be enlightened as to the struggles others face with their mental health. Something everyone needs to learn more about, so that the world can become a more compassionate place. 

    As always a bit thank you to NetGalley, Ilona Bannister and her publishers for allowing me to read this one for free in exchange for an honest review. 

    If you are interested in reading the blurb or pre-order a copy for yourself you can do so buy clicking here. The release date for this one is the 4th of March 2021 and it is definitely worth the wait. It's available as a paperback, hard back, ebook and audio book, so what ever your preference they have it. 

love and hugs all 
Joss xx 

Friday, 11 December 2020

My week in review.

    It's been another week in lockdown, other than taking the dogs out and popping down to pick up some bread off Dan, as he was working in the village this week, we have been stuck in doors. 
    But it's been tougher than normal. I don't seem to be able to settle to anything and just keep jumping from one activity to the next, feeling like I should be forcing myself to do stuff, but unable to actually do so. 
    I've had low periods before, but always been able to shake them after a day or two, but this is different I can't shift it and I'm starting to think I may have depression and I hate it. 
    It's been like this ever since the Gastro doctor told me that I would probably have to be on Chemo for the rest of my life and that even if I had the surgery, I would have to stay on the Chemo. And not just the one chemo drug either, oh no, they were adding in another as well. 
    It's so stupid, why am I getting low about it, I can't change it, this is my life now for the rest of my life. I have to accept it and embrace it. And learn to live with it. And that's something I am normally good at doing so why the hell can I not do it now? 
    I feel like a failure, like I am letting my family down, because I am not doing what I always do. Smiling and powering through, looking for the silver lining and doing the oh so British thing of keeping calm and carrying on. 
    I mean I've never been great at the keeping calm bit, I've battled anxiety for years, but I had the carrying on part down pat until now. 
    Physical health wise at the moment, I am not doing to bad. My nose is full of sores and very painful and likes to randomly bleed throughout the day, and where my fistula in my abdomen is I keep getting some weird almost like cramping or twisting feelings, but they don't last long. I normally just have to adjust my position slightly and it goes away. Even my hair seems to be coming out a little bit less. Except when I have a shower, then for some reason I get a lot come out. The headaches/migraines seem to have stopped too, which is nice. But I'm just so tired and have no energy all the time, but I think maybe that's the depression more than the Crohn's though I can't be completely sure. 

    My tummy is pretty noisy and I spend an awful lot of time going to the toilet to find, all that's coming out is some of the loudest and longest farts you have ever heard. Dan always says, "You don't have to go to the bathroom every time you need to fart." But I can't help it, I've always been so self conscious about farting. And it's not like even when I go to the bathroom they can't hear it, we live in a bungalow, and the bathrooms not that far from the living room, it's just that it feel like the polite thing to do. Especially as some of them right now, stink to high heaven. It's likes something crawled up their and died. 
    Kye's doing better though. He's been getting on with his school work well and all of it too. The forensic psychology, that we are both doing together, as well as his touch typing course and creative writing course, which he just started this week, although I've yet to go through and mark his work for the creative writing course. 

    We've watched some films together too. The new Santa's chronical, one I forget the name of, with dogs and robots, and a place called robot city or something, Adam's family and Hotel Transylvania 3, Kye loves those Hotel Transylvania movies. 

    As you've probably noticed if you read my blog regularly, I've not been getting as many books read as normal either. I just can't seem to stay focused on them at the moment. Which makes all this even harder, because normally books are my escape. 

    So yeah, that it really, sorry the week in review posts are all so dole and blah at the moment, but with me still being locked down, even though most people in Cornwall are currently getting to enjoy tier 1, and feeling pretty blah myself right now, it can't be helped.
    I hope you are all doing well though and fingers crossed I'll be able to pull myself out of this and back to normal before too much longer. 

Love and hugs all and remember to stay healthy, because trust me the alternative sucks!