Happy Halloween! Hope you’re all having a spooky one! The wolf certainly knows what time of time it is and he’s not giving up without a fight!
Honestly, it hasn’t been the best couple of weeks! Suffering from a chest infection to now battling a lupus flare. The wolf really is making a nasty appearance this Halloween!
I don’t know if you remembered a couple of weeks ago, how I talked about my chest being inflamed. How I didn’t want to increase my oral steroids as I didn’t want my rash to go on my face, so we agreed to increase my steroid inhaler instead. If you haven’t read my last blog, here is a link to it: Suffering With A Poorly Chest.
The Plan Didn’t Work!
Basically, a few days after writing that blog, I was no better. The plan didn’t work! So I made an appointment with doctors, and we agreed that the only option now, was to increase my oral steroids. So I did! I increased my steroids from 7mg to 30mg. I rang dermatology and asked if they could postpone my biopsy. They were very understanding and so lovely about it. They said as soon as my rash returns, to give them a ring and they will try and fit me in for a biopsy then.
By Friday, my chest didn’t seem to be improving. Instead, the pain in my chest was getting worse. So I thought I better make another appointment with the doctor and get my chest listened to. I just felt like I needed a bit of reassurance, before the weekend. I wanted to just make sure it was just inflammation on my chest and nothing else going on.
I Had A Chest Infection
I went to doctors, to only find out my chest was actually infected! The doctors always say to me, if something doesn’t feel right, no matter how daft you may think it is, don’t ignore it, get it checked out! If I had ignored my chest on that Friday and left it all weekend infected, with no antibiotics, I would of have been at risk of developing pneumonia. As doctors always like to remind me!
As reluctantly as I wanted to be on antibiotics, a 7-day course of Doxycycline was prescribed. I told her that’s not the best antibiotic for me, as it has given me 2nd-degree burns before. But she said it’s ok, it’s autumn you probably not going to see any sunlight. Plus I can’t keep taking Amoxicillin all the time, as one day it might stop working. So I guess Doxycycline is better in the darker months, and Amoxicillin I’ll save for the summer months!
A Weekend In Casper Cancelled!
Sadly, my weekend away in Casper got cancelled. However, the weekend wasn’t a complete failure, thankfully! We make it to the NEC Motorhome Show in Birmingham. I managed to walk around a few of the cool new motorhomes, before feeling absolutely whipped out. Luckily, there was a theatre area, where guest speakers came and spoke about their motorhome trips. So I spent all afternoon sitting in the theatre, listening to them. The only issue, my bucket list with Casper has now doubled in size, with Norway being top on my list for 2023!
This week was going well. I was plodding through life, slowly fighting off the infection, resting when I can. On Wednesday, day 5 of my antibiotics, my lungs felt cleared from my infection so I thought it was ok to start decreasing my steroids. So Wednesday morning, I reduced my Predinisolne from 30mg to 25mg, with a plan on staying on that dose for 3 days.
I used to drop from a high dose straight back down to my maintenance dose, but the hospital doesn’t like me doing that as it causes a comedown. So now, whenever I go on a higher dose, I have to drop them down slowly. To be honest, it is better!
One Angry Wolf
Just as I thought everything was going in the right direction and I was through the worst of it all, the wolf became very angry! I really do hate the wolf! So now I’m battling one angry wolf! Why does he have to do this to me?
My chest infection is cleared, my antibiotics are finished, and I’m currently stuck on 25mg of prednisolone as I don’t currently dare drop it any lower at the minute until I start to see improvement. I was meant to be attempting to reduce my maintenance dose next weekend, but that’s now not happening. All I can do at the minute is just take one day at a time!
Pre and Probiotics
I’ve just gone and brought myself some pre and probiotics to take. I know probiotics aren’t recommended if you are immunocompromised. But every time you go on a course of antibiotics, it destroys your gut flora. It then takes 6 months for your gut flora to come back. I don’t think I’ve ever lasted longer than 6 months without a course of antibiotics! To hoping if I sort out my gut flora, and make my stomach a bit healthier, it might help me feel a bit better. They say your stomach is like your second brain. If you look after it, it will look after you. It might help some of my gastro issues too!
That’s it from me this week. I’ve got my CT scan on my sinuses and bloods next week. I’m hoping to get away in Casper next weekend if I’m recovered from my flare-up. If I get away there will be no blog. If I’m still too unwell, we won’t be going away and I’ll probably write a blog.
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Until next time,
Goodbye for now
Emma
xox
My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:
https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN
Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
