Well……..almost done it!
Today, I’m almost at the end of week 3. Just one week left to go, and I can celebrate the success of tapering down my Prednisolone from 7mg to 5mg. Something only a few months ago, I thought was impossible to do! Something I felt I was never going to achieve! But here I am, somehow celebrating the success!
It hasn’t been an easy 4 months; it’s been quite a rollercoaster! Fatigue has hit me hard at times, joint pain has left me reaching for many painkillers, and my emotions have been all over the place! There were days I felt too exhausted to continue. There were days I just cried for no reason. But no matter how hard any single day got, there was something which made me continue!
I’m proud of my body!
Another Year Around The Sun
Since we last spoke, I’ve celebrated a birthday! Or some say, another year around the sun!
Just don’t ask me my age!
We headed to Dumfries and Galloway in Scotland for a few days, in our campervan Casper. It was lovely, but I wasn’t well. And sadly, this meant I couldn’t do a lot.
The paddleboard stayed stored away, and the walking boots only got used once. They were used on a short walk around Loch Doon in Galloway Forest Park. On this walk, I attempted to climb a hill. But I got halfway up and had to turn around. It was too much, made me very emotional, but I did get some good views over Loch Doon!
It’s hard when you try to do something you could do, but now can’t. But I kept telling myself, at least I managed a little walk. I wasn’t expecting to be able to do any walks during my 4 months of steroid tapering. This little walk was a gift, and a beautiful gift it was!
I spent my actual birthday in tears, in pain all day long with my joints, feeling sad at how I was poorly for yet another birthday! I didn’t enjoy my birthday tea, as I was suffering from a lot of gastro issues, and all I wanted to do was go to bed. But this is just life living with a chronic illness. Just because it’s your birthday, it doesn’t mean you get a day off from it all, and especially not when you’re tapering your steroids!
On a more postive note, here’s some little pockets of happiness from out trip away:
Other News
In other news, my Methotrexate dose increase is going well! I’ve been on 25mg for 8 weeks now. My body is tolerating it well! My bloods have now been allowed to go from fortnightly to monthly, which has been lovely. And in 4 weeks’ time, I will be getting the full benefits from this dose increase. Hopefully, with the end of my steroid tapering and getting the full dose, I just start feeling so much better! Hopefully in time for our trip!
We fly to New England a week on Saturday! We are spending two weeks road-tripping around the 6 states of New England, hopefully capturing all the autumn colours! I’m not sure how strong my body will be for it. I’m hoping that, as my steroid tapering will be over with, day by day, I will get stronger. Hopefully, I will be able to manage some walks out there.
Trying To Get Off My Pain Relief
I’ve been struggling a lot with pain throughout my steroid tapering, due to my Lupus flaring up. Which you can quite clearly see, just by looking at my face! Honestly, my face is a mess! I have a very clear butterfly rash covering my cheeks, despite using my Tacrolimus Ointment as prescribed.
I’ve now increased my dose of my ointment to try and get rid of the rashes before New England!
Regarding my joint pain, I’ve been taking Etoricoxib. It’s a great anti-inflammatory medication, but my body does not like it! Not only has it been causing me quite a bit of upset stomach, but my kidneys are not happy too! They are never happy when I take NSAIDS, for some strange reason!
Annoyingly, because my kidneys are not happy, it has led me to needing extra blood test, which is not ideal with my poor veins! But I guess doctors wouldn’t be doing their job if they ignored signs of declining kidney function in my bloods.
So basically, I am desperate to get off my pain relief! It’s hard, as my body needs it to help with my joint pain, yet I’m struggling with the side effects. I’m hoping that as my steroid tapering comes to an end, the wolf will start to calm down, and the pain will naturally reduce.
I’ve also put myself onto a bit of an anti-inflammatory diet to see if that helps. Lots of Extra-Virgin Olive Oil (apparently a spoonful a day works just as well as NSAIDs), sweet potatoes, broccoli (that’s been cut up and left to stand 10 minutes before cooking to activate the anti-inflammtory properties apparently), and reducing food that causes inflammation in the body.
It may or may not work, but it’s definitely not going to do me any harm!
Anyway’s, that’s it from me this week. I have a birthday meal to attend. I’ll be back after our New England trip!
Goodbye for now,
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
