Happy #humiraday #5

A new roundup with what has been happening since my last humira shot. The good, the bad, fun stuff and things I've learnt - I try to spend time every time I take my injection to look back on what has happened.

I started my #humiraday posts because I found it a good way to look back over the last couple of weeks and have a think about what I’d been up to, how I’d been feeling…I’m actually getting very close to the end of my own #humiraday because it stopped working so well for me and funding didn’t allow an increased dose (i.e. weekly shots).

This is my second to last Humira injection and I’ll post again for my final shot but need to think of ways I can keep a weekly/bi-weely roundup as it wouldn’t be a proper diary without some form of regular posts, right?!  Until then, here’s what’s been going on since my last injection…

Entyvio (vedolizumab) - what is it like? This post is about my first experience with an infusion - answering questions about what to expect, what happens, side effect and how I felt after the treatment.

The Good

  • I had my first Entyvio infusion and I couldn’t have asked for it to have gone as well as it did. The only downside was the utter fatigue I felt for the rest of the day – nothing prepared me for that! If you didn’t see my post about it, go and have a look if you’re curious what happens as I answered a lot of the questions I had about it.

 

  • Went to an amazing wedding over the weekend and for the first time in ages I felt well enough to not have to run to the toilet every half hour. I ate, I drank, I was merry and Mr Crohn’s and I danced like lunatics until late into the night!

 

The Bad

  • Even though I’ve tapered right down to 10mg of Prednisone (and reduce to 5mg this week – the final stretch!), I still have this massive moon face and it just seems to be getting bigger all the time! It’s such a minor thing compared to the good stuff that Pred has done for me (no more flare!) but I can’t help but feel self conscious or scrutinise my face whenever I pass a mirror. Hopefully it will start going down soon. I can’t remember how long it’s taken before – how long does it take for your moon face to reduce?

 

 

Fun Stuff

  • I planted seeds and those bad boys are actually starting to sprout!!! At the end of the garden we have a small patio area where there’s a table and chair. Mr Crohn’s lined up some pots on the railway sleeper to create a sort of pot border so I filled them with soil, sprinkled some wildflower seeds and hoped for the best. I’m really not a very good gardener so Mr Crohn’s does a LOT of work in the garden but figured I could at least maintain a few pots…looking forward to seeing them grow and will hopefully have some beautiful flowers soon! Ok, maybe not the best “fun stuff” thing out there but I’m pretty entertained by checking on the growth every day! 😀

 

Things I’ve Learnt

  • I attended an introductory CBT class and although although I’m not sure a lot of it will help with the anxiety and worry I get from my Crohn’s, especially when I’m flaring, especially when I’m on steroids – a simple exercise for “present mind focus” to take stop my mind wandering to anything I might be worrying about in the future or the past. Spend a little time becoming aware of what is around your right there and then – find and think about 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things that you can smell and 1 thing you can taste.  It’s a really good way of just stopping your mind from getting out of control sometimes.

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