Before I start today’s blog, I want to take a moment to reflect on what’s going on in the world. I want to send out a rainbow of hope, to everybody who needs it right now. It’s a dark, scary time for many people. My thoughts are with each and every one of you who has been affected by the pure evil of one person.
I find today’s blog a little hard to write. I feel all my troubles are so little compared to what other people are currently going through. Worrying about treatment when there are people worrying about where the next bomb is going to dropped. I want you to know, anything I write today, I know my problems are so little compared to what some people are currently going through.
Spring
The weather has been gorgeous this weekend, where I live. The sun has been shining, the snowdrops are out. Definitely feels like spring is on its way! Just a shame the wolf doesn’t like the sun. I was out cleaning my car this morning with our new jet wash. Since I’ve come back into the house, I feel so drained and tired The feeling I often get after exposing myself to UV rays. It’s so frustrating! The sun makes me feel mentally happy, but physically ill. If I spend too long outside in the sun, my lupus does end up flaring and my skin gets covered in rashes. I do wear factor 50, which does help a little. However, today I didn’t as I was only out for half an hour washing my car, with just my face and hands exposed. Listen learned, next time I will be wearing factor 50, no matter how short I’m outdoors in the sun.
My Hospital Appointment
I had my hospital appointment on Tuesday. It was with my Rhuemtalogy Specialist Nurse. She was asking how I was doing. I told her how painful some of my joints have got recently. She’s going to arrange for me to have a steroid injection. It’s like I don’t have enough steroids already going into my body from my tablets, nasal spray, and inhaler! I guess though, if it’s going to reduce the inflammation and get rid of the pain, I would be silly to say no.
We then went on to talk about the new treatment they want to get me started on. Basically long story short, they haven’t been able to get it approved yet. I am a very complicated case. The treatment they are trying to get approval for is very expensive. Since it’s expensive, there is quite a strict criteria to meet. Basically, the biologicals they want to start me on, are for people who have tried all the other treatments but haven’t worked. For me, the treatment I am on does work. The reason they want to change me is because of my gastro issues and the long-term damage the steroids may be doing to my body. Also, I don’t just fall into one bracket for illness. I have multiple conditions which all interlink. A lot of these treatments are approved for people with set conditions i.e. rheumatoid arthritis, cancer, kidney failure.
However, all this being said, my nurse is confident with the help from my consultant, who I’m seeing in a few week’s time, we will be able to get me approved under special allowances. But for it to be approved, it has to be taken higher. My whole Rheumatology is aware of how bad my gastro issues are and my nurse has said, they know I can’t be left suffering like I am.
My Gastro Issues
For anyone who is new to my blogs, I’m on a very strict diet. I struggle to eat a lot of acidic food. I also have a hiatus hernia, which prevents me from being able to lay down flat at night when I sleep. Instead, I have to sleep on a special pillow that keeps my body lifted upright, allowing gravity to keep the acid in my stomach while I sleep. If I don’t I end up waking up choking on acid in my throat and feeling so nauseous. The hernia is something I have to live with, but my diet hopefully I won’t have to. Currently, all medication I take is creating too much acid in my stomach and irritating it. So, therefore, the hospital thought it would be a good idea to get me on hospital infusions to replace some of the tablets I take. Also the steroids they are desperate to get me off, as they’re worried about the damage to my body they could be doing. I’ve been on steroids for around 7 years now. It’s a long time to be on them.
The Big Hole
This is it from me this week. I feel like I need to go outside and check up on my dad and Alex. They are currently fitting a diesel heater in the van for heating. They’ve just drilled a massive hole in the bottom of Casper. My heart was pounding, watching them do it. I just hope they’ve measured it correctly, and this diesel heater works. Otherwise, it’s going to be a bit chilly in Casper on our next trip!
Here’s the big hole:
Last Chance
Before I go, here’s a little reminder about my book. I’ve extended the reduced price until the end of this month, as many of you were wanted to buy it, but were gutted, as you were too skint to purchase it in January after Christmas. So make sure you don’t miss out on a great saving as it will be ending on the 28th of February! Just one more left to buy it at this reduced price!
How I tamed the Wolf: Living with Lupus is available to buy on Amazon on the Kindle or as a paperback.
Here is a direct link to my book:
https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN
Until next week,
Goodbye for now
Emma
xox
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