My Weekly Lupus Diary

Belimumab Is Back!

Hello! I hope you’re having a great weekend! Can you believe it’s almost the end of January already?

It’s been quite a crazy month for me! A month full of good and bad moments! I’ve been on a fun, snowy adventure in Casper. But the trip sadly ended a day early when we ran out of battery power for our diesel heater! Nevertheless, we still had an incredible 24 hours in the Peak District!

Some photos from our short but sweet trip to the Peak District:

I then had my Facebook account hacked. I did try to appeal but failed, and basically I’ve had to set up a new account from scratch. Slightly gutted, as it means I’ve lost memories that were on there. The ones that pop each year reminding what you posted x amount of years ago. A lot great travel memories and happy moments with friends and family!

So lesson learned…….make sure you’ve got a strong password and two-factor authorisation turned on!

Low Iron

Regarding the wolf, my iron levels have dropped too much again. A battle I’m forever having! As you can imagine, this has left me feeling pretty wiped out. Honestly, this was the main reason there was no blog last week! I felt so tired, I didn’t have the motivation to write!

True be told, I am partly to blame for my low iron levels! Back in December, I decided to stop taking my iron tablets and increased my iron intake through food. The tablets don’t make me feel good. They cause a lot of gastro upset. So I thought instead, I would concentrate on eating a high amount of iron-rich food. So that’s what I did for about 6 weeks.

I knew something wasn’t right when I would have my cup of coffee at breakfast, and then about 10 minutes later, I was reaching for an energy drink, just to help me stay awake. Thankfully, I have regular blood tests. Therefore, my low iron levels were picked up very quickly!

For whatever reason, I just don’t absorb iron very well through food. So frustratingly, I’m back on the iron tablets. But at least I know I’ve tried!

I Have My Injections!!!!

Good news, I have my Belimumab injections again!!! Honestly, the day I heard they had managed to get hold of my injections again, I cried! I cried with happiness!

The news came at a perfect time! I was really struggling! Not just physically, but by this point, mentally too. I can push through physical pain if I feel mentally strong. But I was now 5 weeks without my injections. I still had no answers to when it may come back in stock, or what the plan was while we were waiting for stock. While each day the pain and fatigue were getting worse!

Probably didn’t help, while all that was going on, my iron levels were dropping day by day too! Just adding to everything I was already feeling!

That morning, I woke up and felt like I had nothing left in me to push through another day. All I wanted to do was stay in bed and sleep. My glands were swollen and sore, my mouth was full of ulcers, my body hurt from top to toe, and I felt fatigued and weak. And mentally, I had nothing in me to fight, so I gave up! This was the day I received the phone call about my injections!

Three Weeks On

Three weeks on, I am doing so much better! Every time I open the fridge and see my injections sat there, I have such a huge smile on my face! I’m still feeling quite fatigued, but I think that’s more down to my low iron levels. But overall, I doing loads better, and that I’m very grateful for!

That’s it from me this week. I see my Rheumatology Consultant a week on Thursday were decisions are going to be made about my treatment moving forward. Hopefully, it’s going to be a positive outcome. But at the same time, I am feeling pretty anxious! I’m really hoping he’s going to keep me on Belimumab, despite all the unreliability and stress there is with it. If he does decide to keep me on it, a plan needs to be put in place if we can’t get hold of the stock for an extended amount of time again.

I’ll be back in a couple of weeks, with a full update on how my appointment went!

Until then,

Goodbye for now!

Emma

xox

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