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. 

     

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 

    

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) 

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 .

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 jossie.marie@gmail.com. 

And I am here if you need me. 

love and hugs 

Joss xxx

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 

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! 

    

 

Book thoughts: The stranger times by C.K. McDonnell.

 

When Hannah finds herself almost penniless in Manchester, and in desperate need of a job, she unwittingly finds herself thrust into the crazy world of the strangers times newspaper. Her new boss an eccentric and incredibly moody Irish man, quickly has her doubting her choices. But desperate times call for desperate measures and at this point, what has she got to lose. 

This book is full of vivid and exciting characters and will keep you laughing from the very first page, to the very last. 

McDonnell is a talented writer, who has a knack for keeping you intrigued, and a very unique and wonderful writing style. 

I've not come across his books before but would certainly be interested in reading more of his books in the future. 

As always a big thank you to NetGalley, C.K. McDonnell and his publisher, for allowing me to read an advanced copy in exchange for an honest review. 

If you would like to know more you can read the blurb and pre-order a copy of your  very own by clicking here. This book will be released on January 14th 2021. And is currently available in ebook, audio and hardback formats. 

Let's talk about Crohn's disease.

 

As some of you already know I was diagnosed with Crohn's disease earlier this year. It's been a bit of a whirlwind year, what with Covid and Crohn's, but although I have only just been diagnosed with Crohn's. My IBD team now believe I have had it since I was a child. 

So what it Crohn's, Crohn's is an irritable bowel disease also know as IBD. Unlike it's sister disease Ulcerated Colitis, which can effect the large intestines, Crohn's can infect the whole digestive tracked. From your mouth, all the way down to your butt. 

Crohn's is caused by what is effectively a faulty immune system. Our immune system is designed to protect our bodies from threats. However, for those of us with Crohn's, our immune systems have got a bit confused. Instead of attacking threats in our bodies, they have started to attack healthy tissue. 

This can lead to inflammation, fistula's and strictures among other things. 

My Crohn's is very severe. Probably due to it not being diagnosed earlier enough. So I have what they call Severe fistulated Crohn's. 

This means that as well as inflammation I have holes in my intestines. One of which goes up into my abdomen. 

My Crohn's needs some pretty serious medicine to keep it in check. And that is all they can currently do with Crohn's, try to manage it with medication, as there is currently no cure. 

There are lots of different medications for Crohn's from tablets, through to injections that you can administer yourself at home, and regular infusions. I have infusions, and I have these every eight weeks, at the hospital. 

An infusion is done, by inserting a canula and slowly over a couple of hours or so, pumping the medication into your system. 

I am currently having Infliximab infusions at very high doses. Infliximab is a chemo drug. But is no longer used to treat Cancer. Us lucky Crohnies still get to have it though. 

My Gastro doctor, also wants to add in a second Chemo drug, although this will be in much lower doses and I will take it daily in tablet form. This second drug is to try to stop my body developing antibodies that will stop the infliximab from working. Which it has already started to do. 

The infusions are relatively painless, but you can have a lot of unpleasant side effects. Including hair loss, tiredness, nausea, rashes, chemical burns, dizziness and seizures, to name just a few. 

I also have to wear a medical alert bracelet, so that if anything every happens and an ambulance is called, they can see what medication I am on, and know that I have a compromised immune system. 

Because that is what the infliximab does, it stops the immune system working properly, so that it can no longer attack your body. But this means that you are at a greater risk of catching bugs and not being able to fight off infection. 

Which means, we have to be very careful not to be around people who are sick, and to keep wounds clean. We also qualify for the Flu jab, every year. 

Another option for managing Crohn's is surgery and a lot of people with Crohn's have had multiple surgeries. Some as many as 60 or 70 operations. This can't cure the Crohn's, but as my gastro doctor explained to me just the other day, it can remove the infected and thinned areas, and repair fistula's which then give them a clean slate to work from, when it comes to medication. Sadly, though this does not mean that you can come off the Chemo. 

Some people do only have the infusions for a few years, and then go onto other medication. But for some, such as myself, their Crohn's is seen as too severe, and so that means, we will probably have to have Chemo, every 8 weeks for the rest of our life. 

When you first start having infusions, they will be space closer together, these are know as the loading doses. They are done at what is know as week 0, week 2 and week 6. So that essentially means you will have your first one, then two weeks later your second, then six weeks later your 3 and then the 4 and all following ones, every 8 weeks. 

There is one thing you learn quickly with Crohn's, however, and that is there are no set rules, everyone's Crohn's is different and so treatment and frequency of treatments can vary. 

Now this is where it gets tricky. What are the symptoms of Crohn's? Well, it effects everyone differently. But stomach pain, diarrhea, constipation, weight loss, anemia and a general lack of energy are some of the more common symptoms. 

People with Crohn's, also very rarely have just crohn's. It can cause all kinds of other health problems, including inflammatory arthritis, Ankylosing Spondylitis, Anemia, skin disorders, osteoporosis, gall bladder or liver disease, mouth and gum problems, and many more. 

It is rare for people to die from Crohn's itself but they can die due to problems caused by Crohn's or the medication used to treat Crohn's and they can also die from other diseases that have been caused by the Crohn's. 

So what has Crohn's done to me? 

I have very limited mobility due to Crohn's, as I developed an illness that is connected to Crohn's called Ankylosing Spondylitis, this is inflammation around the lower spine and can lead to the spine fusing together over time. 

I have receding gums and very few teeth left at the top of my mouth, only two molars either side, and all of the teeth on the bottom of my mouth are very loose and may overtime come out on their own. I have already had one do this. 

I suffered from anxiety disorder for years although I am starting to get a handle on this now. Stomach problems that were misdiagnosed as IBS, Irritable bowel syndrome. Inflammatory arthritis, nerve damage that can cause me to suddenly twinge and throw things or let go of the things I am holding, and cause my hands to shake. Once my leg decided to twinge just as I was lifting up the other leg to take a step and I went crashing to the floor. 

I've suffered from anaemia for years and looks like the walking dead, my son and husband used to joke that I was a vampire. I cannot deal with extreme temperatures either too hot or too cold, and I can feel freezing cold when it is boiling hot, or boiling hot when it is freezing cold, which is great fun. NOT! 

I also have insomnia frequently get sores and rashes all over my body, my hair is falling out, my mouth, nose and throat and tear ducts are infected, and I have lots of canker sores in my mouth which means eating can be quite painful. 

And something really gross. The skin on my tongue frequently peels off in great big strips. Lovely right. 

In essence Crohn's is a horrible disease and if they are every going to find a cure, they are going to need people to donate. But sadly Crohn's isn't as well known or understood as say, cancer or heart disease, so it gets a bit neglected.  

So if you would like a worthy cause to raise money for why not consider crohn's and colitus uk.

Well that's it from me, but if you have any questions, feel free to ask.

And remember to stay healthy, cause the alternative sucks. 

Book thoughts: Silent night by Nell Pattison.

    Paige Northwood, works as a freelance sign language interpreter. Having learned to sign as a child in order to communicate with her deaf family, Paige loves her work, but when she finds herself interpreting for the police, in the investigation of a missing deaf boy, and a murdered head teacher, she finds herself buried in a silent web of lies, deception and deceit so deep, she isn't sure they can ever get to the bottom of it. But with a child's life at stake, and the potential for more children to be harmed, Paige knows that the truth must be pulled from the silence. 

    This is a gripping read, with an interesting take on your typical crime/mystery/thriller book. Paige is an engaging and intriguing character who is easy to like, and relate to. She cares deeply and try's not to jump to conclusions. Their are a lot of different characters in this book though and that sometimes made it hard for me to keep track and I often muddled them up. Although with my Crohn's disease turning my brain to mush, it's not that hard for me to get muddled.

     There was some clever misdirection in play with this book, which meant I was pretty much left guessing till the very end. Which is always a good thing in these types of book. 

    And despite my struggled to keep the characters all straight in my head, I did really enjoy this one, and am very grateful to NetGalley, Nell Pattison and her publisher, for allowing me to read a copy of this great book, for free in return for and honest review. It has been an absolute pleasure. 

    If you interested in reading the blurb or getting your own copy of this great book, you can do so by Clicking here. It's currently available  as a paperback, eBook and audio book. And at the time of publishing was on offer, in Kindle format for just 99p so if you want a kind copy, go grab yours quick. 

Week in review

    It's been a tough week, I spoke to my specialist on Monday, and didn't exactly get the news I was hoping for. I mean it was nothing majorly bad. Just, I guess, the straw that broke the camels back I guess. 

    So basically, my body is already building up antibodies to the infliximab so they want to add in a second chemo drug to counteract that. Which given all the horrible side effects I am currently having from the one they already have me on, pretty much broke me. I couldn't sleep that night and only managed to grab a couple of hours in the early morning after having a good cry. 

    He also talked about surgery, it wouldn't be a cure, as there is no cure for Crohn's but he said if they remove the infected area and the area with the stricter and sort out the fistula's we could at least be starting with a clean slate, and it would make it easier for the drugs to do their job. 

    But here was the real kicker of the whole conversation. He said, that he thought I would need to stay on Chemo for the rest of my life!

    And I'm not gonna lie, that hurt. I always had this belief that given time, or surgery my Crohn's would settle down and I could stop having the infusions. But apparently my Crohn's is to severe for that to be likely. 

    Now, I've managed to stay pretty positive throughout this, but there are times when it is just impossible to keep smiling and joking and this was one of mine. I felt terrible and I have spent most of the week feeling pretty low. And just not really having the energy to do anything. 

    I've forced myself to though, in fact Kye and I have got caught up on our forensic psychology course this week, as we started it like two weeks late, as that was when I discovered it and I've force myself to get other things done, because you have to don't you, but I've felt so low. 

    And then couple of days ago, I got a letter from my head IBD nurse, telling me I had to self isolate. So while the rest of Cornwall are laughing it up in tier one, I'm still in frigging lock down. I mean it doesn't make a huge difference as we don't go out a lot anyway, but I'd been craving a trip to B&M and was looking forward to December starting, so I could and then this. Grrrrr. 

    I know, I know it's for my own good, and it's not safe to be running about out there with a compromised immune system, but still, it sucks!

    Still I guess it makes the whole Christmas thing easier, as poor mum was gonna have to choose, between her 3 daughters and each of our families, as to which to have in her bubble, as you only allowed 2 other households, so now I'm not an option anyway, she can see my two sisters and their kids without feeling guilty about leaving me out and I can pretend, that I would have been one of her choices, even though we all know I wouldn't. Not unless she just broke the rules and saw all three of us anyway. 

    And no I am not having a pity party about that, trust me, when it comes to our family, I am the black sheep and have been for a very long time, but it's a long story so I shall spare you the details. 

    But to give you an idea of our family dynamic, I have, had more facebook friends ask if I am okay and message me to see how I am doing, than I have brothers or sister and bare in mind I have eight brothers and sisters. And only one of them has commented about my condition and that isn't messaging to ask how I am doing, that's literally just commenting on facebook posts. 

    Thankfully, I have a lot of awesome friends, so it doesn't really matter, but still, it stings a bit. Especially right now when I am feeling so low. 

    Any who, that's pretty much me this week, a self pitying, miserable, tearful person, I hope your week has been better. 

    Love and hugs 

    Joss xx 

 

Book thoughts: The Proctor Hall Horror by Bill Thompson.

     Dr Julian Girard, likes to put his students to the test, and each year he assigns them a project, on which they must work as a team, to research and evaluate  something from South Louisiana history.

    This year he is certain that he has picked the perfect team of four, to tackle his favourite topic, The Proctor Hall Horror. 

    In 1963, at a plantation house, in South Louisiana,  a teenage boy was found, sitting on the stairs of his home, covered in blood. 

    On further investigation, his parents and sister were found dead, but propped up on the sofa as if they were waiting for someone, however, it was instantly apparent, that they were no longer living, as their heads, were no longer attached to their bodies, but instead, sat upon the mantle, like ghoulish ornaments.  

    There son, Noah,  a mute was believed to be the culprit, but was never convicted, nor did he go to trial as he was deemed insane and unfit for trial. Instead he was lucked up in an asylum, until years later when he was deemed to be no fret to himself or others, released and returned to his old home, to live with the caretakers, who now resided there and had known him all his life. 

    but the Mystery didn't end there. Years later a young girl vanishes in a storm, her boat found docked in front of Proctor hall, and an item that belonged to her, found discarded by it's door. Again Noah is accused, but when no other evidence is found, he walks yet again. 

    Determined to succeed in their project and win the notoriously difficult to get A, from their professor, Marisol, April, Micheal and Andy have no idea what they are getting themselves into, and their not alone in wanting to learn the truth about Proctor Hall, a whole host of other interesting characters are about to enter their lives and the Bayou's of Louisiana and not all of them will escape with their lives. 

    There are a lot of great twists and turns in this book, and plenty of surprises. It's tense and interesting and I won't lie it had me pretty hooked. However, as with a lot of horror books there are a few things that are a little far fetch, that April, suddenly happens to be clairvoyant and never bothered to mention it before, was one of them. I'll admit, that had me rolling my eyes. That things were able to occur with everyone so close and them not hear it, again doubtful, especially when you discover what actually caused those things to happen. You also don't get to really bond with the characters and connect with any of them, but it's not the longest novel in the world and their are an awful lot of characters, and that didn't really effect my enjoyment of the book, as there was so much going on to keep me engrossed and sucked in. And realistically this is a horror, it's job isn't to give you characters that you bond with, it's to keep you on the edge of your seat, get your hairs standing on edge and maybe have you freaked out about going to the bathroom on your own. And this one did a pretty good job of that, I wasn't at any point really scared but I was hooked and intrigued and desperate to find out more and that's good enough for me. So despite the odd unbelievable moments I think I am still gonna give this a pretty decent 4 out of 5. Because I did enjoy it and I'd definitely be interested in reading more by this author in the future.  

    A big thanks to NetGalley, Bill Thompson and his publishers, for allowing me to read this book for free in exchange for an honest review. 

    If you'd like to check out the blurb or by your own copy you can do so by clicking here. It's already been released and is available in paperback and kindle format, and if your lucky enough to have kindle unlimited, you can read it for free too. (Please bare in mind this information was correct when the blog was published but may have changed since.)

    Well love and hugs all and if you read it, please let me know what you thought in the comments. Because sharing is caring and when it comes to books, sharing is also super fun. 

Book thoughts: The Burning Girls C.J Tudor

 

    Jack Brook, is a city based vicar who is forced to move to the countryside with her Daughter, for her job. As soon as she arrives at her new home strange things start to occur, including a young girl running into the church yard covered in blood. 

    This one just all felt a bit too far fetched for me, I didn't related to the characters and found I had to force myself to pick it up and keep going. 

    It's also very graphic, more so than I felt it needed to be. I mean a one point you have a man in very graphic detail, trying to force another to give him head. It made my stomach turn, I won't lie. Maybe it's more to do with abuse I suffered as a child, but I don't feel books need to be this graphic there are ways to say it without having to be so detailed. 

    I know a lot of people love C.J. Tudor books, and so I can't say don't read it, it was terrible, I wouldn't say that about any book, because after all we are all different. But this one definitely wasn't for me. 

    As always thank you to NetGalley, the author and her publisher for allowing me to read this one ahead of its released. Apologies for not enjoying it. 

    But if you would like to read the blurb, or give it ago, you can do so by clicking here. The Burning Girls released on the 21st of January 2021 and is available in all formats, including audio. 

Week in review.

 

    First of all let me apologise for missing last weeks, week in review. I am attempting to make up for it by posting this one a little earlier. Not that there is a whole lot to report, due to lockdown. But of course I did have the new higher dose of infliximab in full. That was interesting! 

   

 Now when you have infliximab two nurses have to be present as they read out the medication you are having so they say your name, followed by the drug and then I guess the serial number or something on the box. Most people were having 2 to 4 bottles of infliximab infused. But when they came to read out mine, there were 18!! Even though they have said I was on a high dose from the start and then a really high dose when they doubled that, before doubling it a second time, I don't think I fully realised how high until that moment as I sat there cringing at every new bottle they read out. And saw more and more heads turning in my direction. My fellow Crohnnies, shocked by the seemingly never ending number of bottles, about to be pumped into my veins. 

    Dan try's to make light of it, and says that I am winning the Chemo top trumps, but it doesn't feel like the sort of thing you want to win at. 

    Oh and how rough did I look after! I was so tired and my brain was like mush, it just didn't want to function and both Dan and Sam kept telling me to speak up, even though I didn't realise I was speaking that quietly. 

    And then what felt like the walk of shame, and with a bloody audience too. My weak kneed wobbly shuffle between car and house, clinging to a zimmer frame, desperate to get out of sight as quickly as possible, while across the street, our neighbours watched on, along with a pack of window fitters, there to replace their windows and god knows what else. I was mortified. And in my rush to get out of sight, I forget the simple instructions on the use of said zimmer frame. And instead of moving the frame, getting it set steady on the floor and taking my step, I tried to move the frame and step at the same time, which meant the frame wasn't doing much to steady me, and I was making things harder, instead of easier, but I just couldn't think what I was doing wrong, why it wasn't working, why I was finding it so hard, all I could think was I need to get in that door and out of sight as quickly as possible. 

    Things didn't get any better once I got inside and tried to make my way to the toilet either. I just seemed stuck in panic mode, and I was burning out fast. By some miracle I made it to the bathroom adn then to the living room, but I was done in. 

    It's stupid, I know, to feel ashamed of something you have no control over, but I do! I hate that this drug can make me so weak and wobbly and that I need to use a walking frame to get around after having an infusion, but I do. 

    Thankfully, I did eventually remember how to use the frame properly and once I did it did help, but I won't lie, I was relieved when by the next day I was feeling steady enough on my feet to ditch it. 

    And that is the plus point in all of this, the more of these infusions I have the quicker I seem to recover. Although whether it is actually working now, this higher dose, I don't know and won't know until my course of steroids comes to and end. 

    Tomorrow, I get the joy of a pip assessment, I hate pip assessments, I wish they would go back to the old system, but it is what it is. 

    Most of the week again has been spent minecrafting. We've build some interesting little mushroom houses, and some fantasy style treehouses. And Dan has just started working on the chateau from escape to the chateau, we love that program. Do you watch it? With Dick and Angel. 

    I changed my profile picture on a lot of my different sites too. To one of my wearing my new wig, I think it actually looks quite nice now. What do you think? 

    And I have been trying to think what I can do for Crohn's and colitis awareness week, which I believe is the first week of December but I am drawing a blank!

    Kye is still being difficult on and off at the moment, I've been trying to get him doing his schoolwork again to try and bring a bit of structure back to him days, but it can be a bit hit and miss. And I've been letting him spend more time on minecraft than I probably should, simply because it's easier, because he tends to behave when he gets to be on there. And with all that's been going on especially these agonising stress migraines I keep getting, I'm way to keen for anything that means I get a peaceful life. 

    Well that's pretty much it for now. All that remains is to ask, how are you coping with lockdown? What do you think of this new tier system, and do you have any nice plans, for the end of lockdown? 

love and hugs all 

Joss xx 

Book thoughts: Girl in the walls, by A.J. Gnuse.

    When Elise's parents die, she suddenly find herself all alone in the world. Transported by officers to a foster home far away from all she knows and loves, but closer to some family members, she barely knows, she decides to take matters into her own hands and flee. 

    Lost and alone she heads for the only place that ever felt like home, somewhere that holds the most memories of those she loved most. The home she grew up in. 

    But a new family lives there now, the ones who brought it after he family sold it, for somewhere smaller. But Elise doesn't care, she has to be their and she knows it better than anyone else, all it's hidden spaces, secret nooks and the gaps between the walls. 

    

    Girl in the walls is an enthralling tale, heart breaking, yet charming. The characters are well developed and interesting and Elise's character is explored so deeply, her emotions, her thoughts and it's wonderful. 

    

    The only thing I didn't like with this book is that it would suddenly ramble of topic, into a lot of description intended to set the scene and help you place yourself there, and at times that was great, at others I found it just rambled a bit too much and I would become distracted and start to lose the flow and my absorption in the book and grow bored. 

 That said, it is just a minor irritant and the story itself is lovely and definitely worth a read. There are lots of tense moments, that keep you locked to your seat, desperately needing to know what's going to happen next. 

    And you really feel for Elise and the boys of the house too. A lovely book and something a bit different, which is always nice. 

    Again thank you to NetGalley, A.J. Gnuse and the publisher for allowing me to read an advanced copy of this book in exchange for an honest review. I've really enjoyed it and think I might need to grab myself a physical copy for my bookshelves. 

If you'd like to read the blurb or pre-order your own copy you can do so by clicking here. It's currently available for Pre-order  as a hardbook, or ebook. And will officially release on March 18th 2021. Happy reading. 

Book thought's: What my husband did, by Kerry Wilkinson

 

    Maddie's life is idyllic, she lives on the outskirts of a beautiful village with her husband Richard, in a comfortable home, has a daughter, Kylie off at collage, and a quiet peaceful life. 

    But that all changes when a her friends husband knocks on her door, late one night, with his dog by his side and tell her he's found a body in the river, not far from her door, and he needs her to call the police. 

    The body, is that of twelve year old Alice, and the last person known to have seen her that night, turns out to be Maddie's husband Richard, who never returned home from a trip out to visit a friend. 

    When Richards car is found abandoned and tucked away, as if purposefully hidden, with Alice's headband dropped beside it's wheel, Maddie is left reeling. Did her husband have a part in all this? Soon the man she thought she knew so well, begins to unravel before her eyes. 

    This is a gripping well written book, that keeps you guessing and is easy to lose yourself in. I know I spent half the night absorbed by it, fighting to keep my eye's open so I could read, just one more chapter, and then grabbed it up again as soon as I woke. 

    The characters are well developed and believable and the small village dynamics are eerily accurate, and I should know, I live in a village just like it. 

    I loved Maddie and really felt for her as her whole life unravels around her, and the village she had once been so involved with begins to turn its back on her. 

    You can feel her heartbreak and anguish radiating from the page and I longed to dive in and hug her close and give her the support she was so seriously lacking. 

    Kerry is a master with words and writes in a simple style that is easy to sink into and lose yourself within the story, I love it when a writer can do this. 

    I am so grateful to NetGalley, Kerry Wilkinson and his publishers for allowing me to read this book in exchange for an honest review and I will definitely be reading more books by this author.  

    If you would like to know more about this book you can check out the blurb and get yourself a copy by clicking here.

    The book, is currently available in the following formats: Kindle, paperback and Audio. 

News in review.

    A news in review, with a difference, for you this time. Instead of something recent we are going back in time to a new report from March 2009, because it's something I think you'll find interesting. 

    So this is the story of  the mysterious serial killer know as "The woman without a face." Now, what's so interesting about this woman is that she had police all across Europe looking for her, for 15 years, in connection with at least 6 brutal murders and a string of break ins. 

    Her DNA was found in connection with over 40 different cases, but that was the only clue to her involvement, that she ever left behind. 

    The first DNA found, connect to "the woman without a face" was in May 1993, on a teacup, at the home of a 62 year old German woman who had been strangled with a length of wire, that had originally been used to hold together a bunch of flowers. 

    And from that day on the same female DNA kept recurring at different crimes scenes all over Germany and Europe. 

    The police were baffled and started to DNA test over 3,000 homeless women, who were drug users and had a record of serious crime. But they were never able to find a DNA match. 

    When in 2007, a German police woman was shot dead in her BMW patrol car, and again, the DNA of "the woman without a face" was found to be present at the scene, they must have become even more infuriated at their inability to locate her. 

    They even put up a 3 million Euro reward, for anyone who could give them information that might lead to her arrest. Along with this they claimed that the reason the woman left no other traces of her presence beyond her DNA, was that she wore gloves. 

    But then after 15 years of searching, with her DNA continuing to turn up at a multitude of crime scenes, something very odd happened. 

    Police in France, on taking a swab from the charred remains of a male asylum seeker in an attempt to determine his identification, again found the DNA of "the woman without a face." 

    This instantly raised the suspicion, that the DNA that had been being found all over Europe at multiple crime scenes, was not DNA at the scene but DNA that had already been present on the swab. 

    German police who had been leading the hunt said "They had probably been involved in one of the longest and most perplexing wild goose chases in criminal history." With police spokesman Josef Schneider  admitting "This is a very embarrassing story."

    Now police investigators have established that the DNA had probably not been left by their quarry but by a German woman working for the German medical company, supply the swabs, who had inadvertently contaminated them. 

    Police have now launched an investigation into the methods used to produce the cotton swabs, in an attempt to establish, exactly how they became contaminated. 

    Can you imagine the frustration the police must have felt, who were involved in this case. All these years trying to catch "the woman with out a face" only to discover she was nothing more than a German factory working, just going about her job. 

    Having to revisit all those cases too. To try and uncover new evidence, after most of it has no doubt been destroyed or contaminated, over time. 

    We can laugh about their blunder, but the reality is, this blunter probably left to a lot of bad people continuing to roam freely and able to repeat their crimes again and again while the police were sent on a wild goose chase. 

    What do you think about this blunder? Are you as shocked as I was at how long it took for them to realise their mistake? feel free to leave your thoughts in the comments below. 

love and hugs all 

Joss xx