Happy Halloween! For anyone Lupus warriors who are reading this today, I hope the wolf isn’t being too aggressive for you this Halloween. You can get a friendly wolf on Halloween right? Or maybe that’s just in my dreams!
Sadly, it hasn’t been a good week with the wolf. To be fair the whole of October, in general, has been like a rollercoaster with him. I feel like I have to walk on eggshells at the minute. I’m constantly having to be so careful not to upset him over the slightest little thing. I know everything normally everything has to involve around the wolf. But recently he’s been extra sensitive. So sensitive that the slightest little thing seems to make him angry.
I haven’t been right since I stopped my Methotrexate for 2 weeks to have the booster. The two weeks of no Methotrexate were a long two weeks. I could feel my health declining day by day. I thought once I started injecting myself again, everything would be ok. But things only seemed to improve a tiny bit. I then caused my stomach to become very inflamed, something else I constantly having to walk on eggshells with. This then just added more stress to my body.
By Thursday evening, I decided all this fighting with the wolf was enough. He had knocked me to the ground and I had nothing left in me to fight back. I was weak, I was exhausted. There’s only so much fighting you can do. It felt as though it was a battle I was no longer going to win.
On Friday morning, I increased my steroids from 7mg to 20mg to give my body a help-in hand, to fight the wolf. It’s only a 7-day dose increase, but it should be enough to get myself well again. I really don’t like having to increase my steroids. I like to try and fight the wolf myself. But sometimes, you just can’t fight it yourself and this month is just one ‘them’ times.
New Treatment
On Tuesday I had my Rheumatology appointment. I would say it overall went well in the fact they want to make things better for me in the long run, but also big changes will be happening to my medication. It’s going to be a bumpy ride to get there, but hopefully, the ride will be worthwhile. You know the phrase, ‘no pain, no gain’. That feels like what is going to be my summary of 2022.
Basically, my rheumatologist was so happy with how far I have come in the past couple of years. How I’ve overall managed to get the wolf under control, how I have more good days than bad days, how I am able to do some of the things I love again. It was only two years ago when I would struggle to walk around a supermarket. Today, I can climb mountains. This is how far I have come, and I couldn’t be happier for it.
However, I then went on to talking about my gastro issues, explaining the limited food diet I am on, the pain and nausea I suffer every day, how I can’t lay down flat at night to sleep. I explained how my Gastro consultant said I have to just live with it and try and manage it the best as I can. My Rheumatologist was like no, you can’t live like this. This isn’t the quality of life you want. I agree, it’s not! I explained it’s partly caused by my hiatus hernia and partly because of all my medication. My Rheumatologist agreed and basically said my medication is destroying my stomach. She went on to explain how we have to do something before it becomes too serious.
The Plan
So the plan is to basically get me started on hospital infusions. They are going to put me on a biological medication. They are not 100% sure which one, as it has to be taken into discussion with my full health care team. It’s a high chance it could be Rituximab, but won’t know for certain for a few weeks. Once I’m settled on my infusions, they will try and get me off my steroids, or at least try and get me onto a lower dose. They are also looking at stopping my Hydroxychloroquine as I’m suffering from a lot of eye issues. If I can stop both of them, that will be 5 fewer tablets going into my stomach each day. Hopefully, this will have a positive impact on my stomach.
It’s going to be a long journey mentally and physically. Coming down off steroids is one of the toughest things I’ve had to do. I’ve done it from 10mg to 7mg a few years ago. I was horrible! It was hard! I just need to get my mindset right and do it again. When days are tough, I have to remind myself, better days are coming. Remind myself, one day I might be able to enjoy a lot more food again. I might be able to sleep laying again. Like I said above, ‘no pain, no gain’!
Anyways that’s it from me this week. I’ve finally brought myself an air purifier. I’ve been on about it for months, humming and ahhing about getting one. But with my sinuses doing my heading again, I decided to bite the bullet and get one. I will let you know how I got on with it and if it makes any difference to my sinuses, once I’ve used it for a few weeks.
Here’s what my air purifier looks like:
Next week, I’ve got got a busy week of medical appointments. Two hospital appointments and one doctor appointment. I have to get a chest X-ray to check for TB before starting my infusions (as it’s the protocol to do so) and then I have my eye hospital appointment. Then my doctors is just my monthly bloods. I definitely keep the NHS in business! Oh and this week I’ve been tested for all sorts of viruses like HIV, Hepatitis, Chickenpox, and the list goes on. Honestly, my body isn’t riddled with viruses, just guidelines before starting any biological treatment. Definitely, having a bit of an MOT on my body!
Anyways, until next week,
Goodbye for now
Emma
xox
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