It’s been a long couple of weeks! A long couple of weeks of appointments, blood tests, phone calls, pain, and feeling like my life is just on hold. The wolf is angry, and without the treatment, he isn’t going to get happier.
I know better days are coming! I know soon I’ll be back to living life again! But right now, the wait feels long! Waiting to get that date! Waiting to start feeling well again! Waiting to be able to live life again!
Six Samples of Blood
Last week, I had six test tubes of blood taken in preparation for starting my new treatment, Belimumab. One test I had done was my TB screening. Thankfully, my test came back negative, which means I’m ok good to start my new treatment. If it had come back positive, it would have meant three to six months of treatment to get rid of the TB, which would have delayed my new treatment from starting. Thankfully, that’s not the case!
There’s a type of TB called Latent TB. You don’t feel ill with it. You don’t know you have it! You can live with it all your life, and you will never know. However, treatments like biologicals can activate it, making you very poorly. Hence why it’s an important routine screening to have, whenever starting new treatments like biologicals.
What’s also interesting to know, TB doesn’t just occur in your lungs. You can get it in your bones, your brain, your kidneys, etc. I thought was pretty interesting to know!
My Eye Appointment
On Friday, I had my Neuro Eye appointment. I had some scans done on my eyes, followed by a consultation with the Neuro Eye consultant. I have a lot of trouble with my eye muscles not working together, leading to a lot of double vision. Over the years, the muscles have got worse, leading to stronger prisms in my glasses.
The Neuro Eye consultant has arranged for me to have an MRI on my brain. He wants to double-check check my Lupus hasn’t spread onto my brain, causing Neuropsychiatric Lupus. Hopefully, it hasn’t! He also wants me to get tested for MS, but I very much doubt I would have MS and Lupus. It’s not often you would have the two conditions together. But I think he just wants to rule out any possibilities.
Botox in My Eyes
Depending on my MRI results, they can offer treatment for my eye muscles to try and get them working together. The two options I would have are: one, Botox injected into my eye muscles but that just sounds painful. Plus, I would have to have it done every 12 weeks, so certainly doesn’t sound very appealing. Or two, they can operate, but I think they prefer to operate when my prism strength is a bit higher. Currently, I’m on prism 4, so I’m not quite running out of prisms yet. So I probably don’t need to go down the surgery route yet quite yet.
So Hard to Make Plans
One thing that’s really hard at the minute, is that I can’t make any summer plans! I want to start planning my summer road trip, but I don’t know how I am going to be feeling, to what type of holiday I’m going to manage. I want to go to Albania and do some of the walking trails in the Alps there. But I don’t want to go, and not be well enough to do any of them. I might as well save it for when I am well. Also, I need to know when my infusions are going to be. As I won’t be able to go away on the week’s I’m due to be in hospital. So a bit of planning ahead will be needed!
I know some of you might be thinking it’s not a big deal, but travel is such a big part of my life. I guess in one sense, it’s my therapy. Wherever, it’s a weekend trip in the van, or catching a plane somewhere new. Alex said to me when we were in Norway, how when I’m on the road traveling, exploring new places, I become this happy, excited person. All my worries just seem to disappear, and a permanent smile becomes tattooed on my face. It’s so true! Travel is freedom for me and always has been! I always hate that moment when I’m on the way home, and suddenly all my worries return. I’m sat there thinking about all the appointments I have coming up, wishing I could just stay away from it all a little longer. I’m sure some of you can probably relate!
Basically, I just feel like my whole life is on hold right now! I feel like I’m just surviving each day, and not living each day. I’m too unwell to do a lot right now, and I don’t know what the coming months are going to bring, so I can’t plan a lot either. I just feel like my life has just become hospital appointment after hospital appointment. But I keep telling myself, better days are coming! I just want to get started on my new treatment!
Anyways, hopefully, on my next blog, I will have some good news to share with a date for my first infusion! All my pre-tests have now been completed and I’m good to go!
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
