Hello! Hope you all had a lovely Christmas and New Year.
We headed to the Cairngorms National Park, in Scotland for the New Year. Oh, what an incredible start to 2026 it was! We had bagpipes playing Auld Lang Syne as we welcomed in 2026 in a little ski bar at the campsite. We then woke up to a winter wonderland, which was just sooooo magical. By the time our trip came to an end, we had to dig ourselves. It was crazy, but I loved it!
Things Have Been Good
Things have been good with my health lately. I feel like I’ve got a good balance with my medication, and I’m starting to be able to do things again that I haven’t been able to do in the couple of years. I’ve managed a couple of runs, I’m feeling stronger on the walks we did in the Cairngorms, and overall I feel like my body isn’t so ‘fragile’.
I really hope 2026 is my year with me health. It’s the year I get stronger agian.
Steroids Have Reset Me
It’s weird, I feel like my increased dose of steroids that I had for my chest infection has kind of reset me. Before, I was feeling quite tired, struggling a lot with anxiety, and struggling with my asthma and the cold air getting onto my chest.
Now, even though I’m back on my normal dose, 5mg, I feel a lot better. A lot of my anxiety has gone, I have a lot more energy, and even though the weather has been a colder, it’s not affected my chest at all. In fact, the only time I’ve used my blue inhaler is before running, just a preventive measure.
It’s so strange but I’m not complaining! It probably also helps having my iron levels back in range again. Low iron affects your body in so many different ways!
Injection Rash
I think I’ve talked about it in the past on here, about the rashes I get from injecting my Belimumab. Well the other week, half of my thigh decided to all bruise over. Honestly, I don’t know why, nor why I’m having so many issues injecting my Belimumab.
It’s frustating as it’s medication I need and works so well at keeping the wolf happy. My Methorexate causes me no problems, yet my Belimumab causes nothing but drama! It hurts to inject, and leaves rashes and painful injection sights all over my thighs. I can’t inject in my stomach, as I get belly ache. I honestly feel like I’m in a bit loosing battle with it at the minute, and dread injecting every week.
If anyone has any tips, please do spill.
Iloprost Infusions
I was meant to be going into hospital for my Iloprost infusions tomorrow. But unfortunately, they have been delayed a week. It’s slightly frustrating as I just want it all to be over with it. It’s something I’m really not looking forward to, and just want to have it and put it behind.
My nurse rang me on Friday afternoon, and asked if I didn’t mind giving up my bed for somebody who urgently needs their Iloprost, and delay mine a week. As much as I didn’t want to delay mine, and it upset me at the time, I agreed I would, knowing it was the right thing to do.
I need my Iloprost, I’m not in urgent need for it. By waiting a week, I know I will be ok.
It was also lovely for my nurse to ask, and check I was in postion to delay my treatment, instead of just doing it. Normally, treatment just gets cancelled, and you don’t get a say.
Split Over Two Weeks
As grateful as I am for the ward rearranging me the following week, frustratingly, the ward only has a bed available Monday to Thursday. So I’m going in for 4 days, then I’m going to return the following week for my 5th dose.
I asked if that’s going to be ok, as I’ve never had it like that, or known anyone to have it like that. They said it’s fine, and some patients apparently prefer it as it gives your veins a chance to rest, and your body to recover and get stronger again for the final dose. As much as I don’t like the sound of it, having it over two weeks, you never know, it might actually be a lot better for my body. I might prefer it this way moving forward, especially with all the drama I get with my veins.
That’s all from me this week.
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
