Happy New Year guys! I hope you all had a wonderful Christmas and a great start to 2025!
We had a wonderful trip to Kuwait and Dubai for Christmas! The weather was perfect! The temperature hovered around the mid-20s, not too hot, and not too cold!
We woke up on Christmas Day morning with a stocking on our door, filled with homemade gingerbread cookies, from the hotel staff, I mean Santa! We spent the day at the World’s Largest Waterpark, riding the slides, and floating along the lazy river. There was festive music playing and the staff were all wearing Christmas hats. It certainly became a Christmas to remember!
The rest of the holiday consisted of going up different buildings to different viewing platforms, including the World’s Tallest Building, the Burji Khalif. When we weren’t standing high up in a building, we got ourselves stuck in the desert! Luckily, three very kind, local men came to our rescue and pushed us out! Then on the final day, we headed over to Hatta. A village in the Hajar Mountains, where we spent a day doing one of their hiking trails. A trail that takes you up to the famous Hatta sign. The views were incredible!
Our time in Kuwait was very different compared to Dubai! Kuwait City, where we spent our time, felt very untouched by tourists! It’s a beautiful city, the locals are very friendly and welcoming, yet there’s no one around! We literally had the city to ourselves, which I kind of loved!
Devastating News
Just before Christmas, I received some devastating news regarding my Belimumab! Just as I was starting to feel really good on it, I received the worst news I could have asked for…….it’s become unavailable in the UK! Not just my injections, but the vials for the infusions are also out of stock! So I’ve now been without my injections for four weeks! Honestly, I’m heartbroken!
It’s heartbreaking knowing just how well I was feeling on it! How it was starting to fully give me my life back, something I had longed waited for all year! How I had plans in place to get my steroids down from the 1st of January, because finally, my body felt strong enough to be able to do so! How I had plans to get back out running this year, and climb mountains again, because I was finally heading in the right direction with my health, with strength, with the wolf!
But now, I feel like everything has been taken away from me once again! All my dreams and goals for 2025 have been ripped away from me!
Not Sure What the Issue is?
I’m not sure what’s going on! I know the drug company GSK has been contacted to see if it’s going to be a short-term issue or a long-term issue. My rheumatology team is aware I’m without one of my most important medications and is currently trying to make a decision on what to do. Hopefully, I will get some answers next week, and some kind of plan moving forward.
I’m trying to stay positive! I’m hoping it was just a Christmas issue with GSK and stock is going to come back in next week. I know it’s very wishful thinking!
My health is deteriorating day by day, as expected. But I’m very grateful I didn’t get too poorly on holiday without it! I started to struggle more towards the end of the trip, especially with fatigue. Since I’ve been home, pain and fatigue has become a lot worse. Thankfully, it is somewhat managed by pain relief and caffeine, but either is not ideal! Around teatime onwards, I go really downhill, feeling very unwell, which has left me going to sleep very early many nights this week.
Hope
I really hope my Belimumab comes back in stock next week!
Whatever the issue is GSK, please sort it out! This medication is everything to me and shouldn’t be this painful to get hold of!
That’s it for me this week! We are heading away in Casper next weekend, hopefully, as long as my health doesn’t deteriorate too much between now and then. Then hopefully, when I’m back with my next blog, I will have either some good news about my Belimumab, or there will be some hopeful, promising plan in place, moving forward with my treatment.
Until next time,
Goodbye for now
Emma
xox
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