3 dates in the diary – April, May and June and beyond (hopefully).
In January my blood work came back saying that the medication I was on seemed to be doing an ok job … in February it was not doing enough to keep me out of trouble. So, the next step was infliximab.
After best part of 2 months build up and looking at experiences of friends and the social media community the time for my first infusion had finally come around.
Yesterday
👆 So I did my usual, distractions – baking, getting my nails hospital ready (what!!), spending money on things I don’t need … etc.
Which is good – until you go to sleep! I woke up around 02:30am in pain, physical pain that I now know is tied to anxiety. Things that I would not usually have batted an eyelid at, my body is overruling my brain and telling me I am feeling anxious – even if I have managed to bury it in distraction!
So I finally accepted it. I don’t have to be in pain. If I had a headache, I would take a painkiller so how is this any different? So instead of letting them gather dust on the shelf, I finally accepted that popping an anti anxiety pill made sense 🤷♀️
1 tiny tablet and a glass of water and the pain disappeared and I was back to sleep in minutes 💪
Today
The new iron infused Leanne is ‘almost’ a morning person … ‘almost’! 🤣
I woke up about 7, got ready for work and made tea ☕️ … laptop on for a couple of hours before getting ready to go to the hospital.
Packed lunch made – hospital food sucks – (Why make a cheese sandwich with no butter?) bag packed of all my usual supplies, a super cup of tea in the flask that never goes cold and Papa McC taxis drops me to the entrance of the Day Unit.
Except in none of my letters does it say that the Day unit has moved to the other side of the hospital 🙄
A printed sign on the door saying it has moved to 1st floor by imaging.
Now instead of the ‘loads of time’ I left myself as being late makes me unnecessarily stressed … I am now late and I have no idea where I am going.
I go to the 1st floor and look for ‘imaging’ … no signs. I ask a nurse and she doesn’t know, I keep walking, the next person I see is a young doctor and he thinks maybe that way … sorry 😬 … I see another nurse who points back the way I came and into the Emergency Day Unit … not the same thing but I can’t be the first person to ask, as confirmed by the receptionist 😤 But at least she knows.
All the way down that way 👉, through the doors down the stairs and then look for imaging and when you get closer you will see signs for the Day Unit.
On the plus side, it is part of the hospital that has been refurbed and the unit is much nicer than the old one … really fresh and clean and big, loads of space!
Sit down and we start the usual, let’s find a vein game 🤣 3 tries and then a win! 🥳
This time I decided that instead of just sitting for 4 hours and allowing myself to get overwhelmed by being stuck in a hospital like I usually do, I would use the time to work on tasks that are easier without my phone ringing or my emails dinging 🔕 I would highly recommend it, I got loads done – maybe minus the needle in the hand of you can! 🤣
I had a nice chat with the lady in the comfy chair next to mine. It was her first time and she had a small panic attack after her treatment started – I did exactly that my first 2 times I went there for iron infusions, it is horrible! 🤯 So we talked for a little while about everything and nothing – she has cancer and her husband has colitis so they will get to know the unit well …
4 hours on and the student nurse doing my obs is very interested in the dashboard I am building but sadly, I must leave – 4 hours is enough 😂
That’s me done for a couple of weeks. Fingers crossed my body likes the treatment and is not dramatic about it!
🌹
My unwilling journey with Crohn’s Disease 