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