Hey! It’s been a little while since I’ve talked to you all!
Life has been soooo busy lately! We’ve been renovating our hallway, stairs, and landing, and what a big job it has been! Literally, I’ve spent every weekend for the last few weeks with a paintbrush in my hand. But it’s looking good, and all the hard work has paid off!
However, let’s just say it’s an area of the house I will not rush to redecorate again! You don’t realise how tall your ceilings are until you have to paint the stairs. And you don’t realise how many door frames you have until you start sanding down and glossing.
It’s not completely finished, still all the finishing tounches to go, but here’s some before and after photos:
My Health
My health overall hasn’t been too bad recently! He allowed me to stay well to help with the renovations. Hopefully, things will stay good too, as next week, we head to the Isle of Mull in our campervan, Casper.
I’ve sooo excited to get away next week, and the weather is looking goooorgeous! I don’t know what’s going on with the weather in the UK this year, but I’m loving it! If only all our Springs and Summers looked this nice!
The plan is to do lots of walking and paddle boarding if the wolf allows. I’m feeling the strongest I’ve felt in some time, so hopefully I might be able to get out on some longer hikes this trip. There is one mountain I would love to climb called Ben More, the Isle of Mull’s only Munro. But as much as I would love to climb it, I don’t think my body is quite strong enough for a mountain quite yet, but we will see. Not giving up on hope quite yet!
Bone Scan
Since we last spoke, I had an appointment with my Specialist Nurse. My appointment went well! We talked about getting more support to help me decrease my Prednisolone. She also talked about referring me for a DEXA scan, which is a bone scan. I’ve been on steroids for almost 10 years, and even though I’ve been taking calcium and Vitamin D tablets, she wants to check that my bone health is ok.
Amlodipine
My battle with my circulation has continued! My Nifedipine helped very little, so we decided to stop it. I’m now on Amlopidine to see if this helps any better. This is my last option! There are also conversations about whether or not to refer me for another 5-day course of Iloprost, or if to try and see if we can get my circulation improved with just Amlodipine on its own.
So far, I’m getting along with Amlodipine a lot better than Nifedipine regarding side effects. I don’t seem to be getting all the heart palpitations or dizziness that I get with Nifedipine. But whether or not it’s helping my circulation, there seems to be very little evidence at the moment. But I’ve also only been taking it for about 3 weeks, so I probably need to give it a lot longer. One good thing, it’s brought my blood pressure down from high to normal range, which is good! First time I’ve seen my diastolic number in the 80s in two years!
I really hope my Amlodipine starts to work soon! If this treatment doesn’t work, the only option I’m left with is monthly Iloprost infusions, which I really don’t want! It won’t be 5 days of connective infusions, which is a slight blessing. Instead, it will be just one day. It’s what they call a ‘top-up dose’. Even though it’s only one day, it still doesn’t make it any better! It’s still one day of the nasty infusion! And every 4 weeks will come round wayyyy too quickly!
So all I can do now is hope and pray for this Amlodipine to start working!
That’s it from me on this blog. Hopefully, after my trip, I’ll be back to writing a bit more regularly now that the renovations are done for now!
Until next time,
Goodbye for now
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
