I’m very tired and exhausted, but I’ve just ticked off another round of Iloprost!
I’ve talked about it on here many times before, how tourchest Iloprost infusions are. How you are literally torturing your body for 6 hours, trying to push your body to tolerate the maximum dose possible. How you’re fighting jaw pain, migraines, light sensitivity, high temperature, etc. It’s not an easy week! But somehow you find the strength to just push through it!
I Feel Like Each Time My Body Gets Stronger
I’ve had 6 rounds of this treatment in total now. The pain doesn’t get any better the more you have, but I feel like each round, my body learns to deal with the pain a little bit better. This was the first round, I tolerated the maximum dose for my body weight for the full week. I did not ask them once to turn the infusion rate down, despite them offering many times!
I am still in shock, but proud of my body at the same time!
Normally, during the 5 days, I’ll have one bad day. A day when the pain gets too much, and I loose my strength to keep fighting. This week I weridly didn’t! The pain wasn’t pleasant but I felt I was ok, I could keep going, I could keep pushing through it!
The hardest part I found, is when the nurse comes to tell you, ‘just 30 minutes left and we will swap you over to the saline flush’. That 30 minutes become the longest 30 minutes of your life! You literally listening out for the trolley sound coming over to you, to swap that infusion bag over. And when the trolley you think is coming over to you, goes to a different patient, your heart sinks. Them minutes honestly feels like hours!
To Me It’s About Having The Right Mindset
I always say, you need the right mindset to get through Iloprost. The minute you tell yourself you can’t push through the pain anymore, you won’t be able to. If you feed yourself with positive thoughts, telling yourself you’ve got this, not long to go, etc, you will get through it!
Another coping mechanism I have, when the pain does get bad, instead of getting agitated over it, making it feel 10 times worse, I take slow, deep breathes. I don’t know why, but it helps! Maybe because I’m concentrating on my breathing instead of the pain?
Need To Start Been Kinder
I always think my body hates me for everything it puts me through with my illnesses. I spend a lot of time resenting my body for the pain and problems it gives me. I always think my body is weak, can’t handle much, etc, as I’m often unwell, struggling with pain and fatigue, struggling to keep up with ‘healthy’ people.
But after this week, riding out the infusions on the max dose for my body weight, which only a small % of Iloprost patients actually tolerate (because it’s such nasty stuff), I’ve realised my body isn’t weak! And maybe I actually need to start being a lot kinder to it, appreciating everything it actually copes with, instead of hating it so much! And maybe then, I will finally find some peace between me and the wolf, and stop resenting him so much!
Please, any Iloprost warriors reading this on here, please don’t compare yourself to me! I honestly don’t know how my body did it! You all do incredible! Soooo incredible! Just riding it out on the lowest dose is one incredible achievement, and that you should be very proud of! 💛
Nightmare With My Veins
My veins are so sore and bruised! I had a 11 cannulas in total! Some failed the minute they were placed, others failed halfway through the infusion. I had tracking, lots of painful tracking! I had once cannula that was placed almost on my bone, which was incredibly painful, and in the end, ended up bleeding out. They were going back into bruised veins from earlier on in the week to try and get access, as vein access became desperate. It was awful!
By Friday, I felt like one giant pin cushion! I was almost in tears, not from the pain from the Iloprost, but from the pain in my veins.
I said to them, ‘it’s a good job there isn’t a day 6 on this Iloprost’! They laughed and joked and said, ‘we would tell you not to bother coming in’!
Let’s Hope My Amlodipine Works
Now that my blood vessels have been opened back up, I’m hoping the Amlodipine will help to keep them open, or open for a bit longer! I will keep you updated over the coming weeks!
Also, I have an update with my Belimumab, my injections are finally getting delivered tomorrow morning! It’s taken 3 weeks for the new Homecare to sort out my prescription, and sort out whatever issue they had with it. This had left me with missed doses, which is very frustrating!
Discussions About Changing My Injections Over To IV
My specialist nurse came to see me while I was having my Iloprost. She mentioned about maybe swapping my injections to IV. Not ideal, as it will mean I will have to go into hospital every 4 weeks for the infusion. But it will mean I will hopefully get a consistent supply of my Belimumab.
With my injections, every time my prescription is due, there are issues. Honestly, the number of different issue’s I’ve had, I can’t write it! Because of this, I end up missing doses. My nurse was like, ‘we are never going to get your condition under control, if you keep stop starting your treatment’. And it’s true! It’s not good at all! Not only that, it’s all the stress that comes with it, when I’m trying to get hold of my injections, wondering what’s going on, trying to chase it on, etc. So we will see what happens when my next prescription is due!
Reducing My Prednisolone
On top of that, she wants me to reduce my Prednisolone down by 0.5mg every 4 weeks. She wants me to drop them now, but going to give myself a few days to recover from my Iloprost, then do so. Otherwise, it’s just going to be too much for my body to handle!
Honestly, I’m not looking forward to it, but I need to! I know it’s going to make me ill, but I’m just going to have to get on with it, and ride out the withdrawal symptoms!
Anyway’s that’s it from me this week! No plans this weekend, other than to rest and recover. Hopefully, listening and looking after my body this weekend, giving my body time to heal, will prevent me from going into any flare-ups next week!
Until next time,
Goodbye for now
Emma
xox
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