Hope you’re all having a lovely bank holiday weekend! We haven’t gone away this weekend, despite the lovely weather forecast! I’m not particularly well at the minute, and we travel to Albania next weekend. So this weekend I wanted to be at home, resting as much as I can, and getting myself ready for my trip!
The Stress Of The Iloprost
Ever since I had my Iloprost infusions, it’s put my body into a flare. A flare that doesn’t seem to be shifting anytime soon!
Iloprost infusions put a massive amount of stress on your body. I talked about it a lot in last week’s blog. You are literally pushing your body to the max every day, pushing through the pain. You are stressing out your body so much, just to tolerate that higher dose. You know it’s going to have a knock-on effect afterwards. You know it’s not good for your body. But all that is on your mind at the time, is getting the highest dose possible, just so you get the best possible outcome afterwards!
Increased My Steroids
It’s been a long two weeks of a lot of pain, weakness, and fatigue, with no signs of improvement. So now I’ve gone and increased my steroids to give my body a boost. I was trying to avoid it, hoping my body would find some strength to fight it off on my own. But honestly, I’m done fighting! When your body hurts from head to toe, there are only so many days you can keep pushing through the pain until enough is enough. This is when I know, I have to accept that extra bit of help to get well again. And that’s okay!
Good News About My Belimumab
I’ve finally got some good news about my new treatment! Belimumab is back in stock! For any of you who’s not aware, or missed my previous blog about Belimumab, there’s been a National Shortage.
Honestly, I was soooo happy when I was told this news! I was beginning to give up hope on this treatment. I was starting to painfully accept that Belimumab may not be an option for some time. Wondering what plan B would be. If there is even a plan B.
But just as I was giving up on hope, I received the best news ever! Belimumab is back in stock! So my injections were ordered, have arrived, and straight after Albania, I will be receiving my first dose. Honestly, so excited! Of course, there is a lot of worry, about how my body is going to respond to the new treatment, if it’s going to work, etc. But trying to stay optimistic! This treatment is hopefully going to give me my life back! The life I love! Not the life where I feel like I’m just surviving each day, fighting pain daily, pushing through fatigue, feeling too weak to do a lot of basic stuff we take for granted in life, and constantly replying on others for help. This life makes me pretty miserable, even though I do try and find joy in the smallest of things.
2nd Patient In The Trust To Ever Receive It!
A couple of months ago, my Rheumatology team went to order my Belimumab injections. This was when they found out there was a National Shortage, and was unable to order my treatment. I thought to myself, how strange! Surely they should have known about this? Surely I’m not the only patient on this biological in my trust?
Last week, I was speaking to the pharmacist in my trust. I am the only patient in the trust that is on/going to be on Belimumab. I am the first patient in our trust to ever receive the injectons. This now makes sense why it took longer to get things set up before, for my treatment, and how there was nothing already in place. The first person in the trust to receive this treatment had the infusions. This was a few years back too. They only had 3 or 4 doses and then stopped.
The Plan
Belimumab comes in infusion or injection form. The infusions are monthly, the injections are weekly. Originally, I was going to have it as an infusion. However, because I already self-inject comfortably with my Methotrexate at home, my consultant has decided to put me on the injections. This will save me from having to go to the hospital once a month for an infusion. So I’m pretty happy with his choice!
The first two doses of Belimumab will have to be done in hospital. This is because,with any biologicals, there’s a risk of a reaction to the drug. Often the allergic reaction happens on the 2nd dose and not the 1st dose. After the 2nd dose, if there are no signs of reactions, and I’m confidently self-injecting, I will then be allowed to continue treatment at home, injecting myself.
I have to inject my Belimumab on a different day to my Methotrexate, which is not a problem. I also need to make sure I’m rotating where I inject, just to prevent hard skin from forming. To be honest, I already do this! My bloods can stay at monthly, which is a relief. My veins are not in a great way at the moment! I’m getting a lot of scar tissue forming, and one of them is at risk of collapsing. This is a worry, as it’s my best vein, but also the one that’s been overused. I do try and rotate which vein is used, but when you are having bloods taken every 4 weeks, sometimes more, for years on end, they aren’t going to be happy!
Extra Planning For Travel
The only downside to Belimumab, it has to be stored in the fridge. Slightly annoying, but it’s not the end of the world. It just means when I am planning trips, a little extra planning is needed. Going away in the camper van is ok as we have a fridge. It’s more when we go on road trips, travelling from hotel to hotel. I know a lot of hotel rooms do have fridges with little freezers. In America, a lot of the hotels have ice machines. In the past, I’ve filled up Tupawear containers with ice and used them as ice packs in the car for food. If your hotel room doesn’t have a fridge or freezer, the receptionist often will put the ice blocks/medication in their fridge/freezer. I guess there’s always a way around it!
I’ll Be Back In A Few Weeks
I fly out to Albania next weekend, so I’m not going to be around for the next few weeks. Not sure how much I’m going to be able to do when I’m out there. But whether it’s driving to a viewpoint or walking to a viewpoint, I’m sure I will have a great time. I’m just now really hoping this increased dose of steroids will help me feel a little better, just enough so I can enjoy my time away that little bit more!
It’s Hard And Exhausting
It’s hard and exhausting fighting the wolf day in, day out. I know many of you warriors will be able to relate. You keep going because you have to keep going, but it’s not easy. It makes you sad. It makes you crave the life you used to once had. You constantly feel like you are letting people down around you. You are constantly having to ask for support. Some people will willingly give you it, others not so much. Thankfully, I’m very lucky to have a lot of support in my life, but I know this isn’t the case for everyone, which breaks my heart. I know it can be such a battle to get people to understand! Some people want to know everything, to try to understand. Some people are just not interested, and sadly, you can’t change that!
Lupus Awareness Month
It is Lupus Awareness Month, and I will try and educate as many people through the power of social media. I will keep trying to spread more and more awareness for us warriors. Help more and more people understand what Lupus is, the cruelty of the disease, the impact it has on our life, and the grief it causes. How we can look fine on the outside, but inside our bodies are throbbing away in pain. Yet we keep smiling and attempt to just get on with our days because we have no choice.
Life can very lonely at times. Adaptations are often needed, especially on bad days. Sometimes these adaptations can make you feel like a hindrance to others. Some can make you feel old before your time. Somedays our bodies are too weak to stand for long. Somedays we can’t walk far. Somedays, just getting dressed is hard.
But then you do have good days. These days can be quite the opposite! The days you can feel almost invisible to the wolf. The best kind of days! These are the days I crave so much right now! The days we can sing and dance in the shower, go for a run, and walk up mountains. The days I dream about getting back!
Every day living with the wolf is unpredictable!
That’s it from me this week! Hopefully, when I’m back writing my blogs, I will have received my first dose of Belimumab!
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
