Hope you’ve all had a great week!
I spent my Sunday morning having a Colposcopy. My first ever appointment on a Sunday! Not my first Colposcopy though! Unfortunately, I’ve been attending these for the past 5 years or more, and likely to be continued. I always test positive for the HPV virus and Low-grade Dyskaryosis. Because I’m immunocompromised and unable to fight off the HPV virus easily, they like to keep a good eye on me!
As much as I didn’t like the idea. of going to the hospital on a Sunday, it wasn’t too bad! The roads were dead, and the parking, well let’s just say I was spoilt for choice! So maybe Sunday appointments are the way forward?
My Colposcopy was actually meant to happen on Monday. I drove all the way to the hospital, right through rush hour traffic. Just as I was getting out of the car, I had a phone call to say they had to cancel due to the nurse being unwell. As frustrating as it was driving that way for nothing, I know it can’t be helped!
My Colposcopy went all ok. A little sore after, as expected, but nothing too uncomfortable. I even got to see the inside of my Cervix’s on the screen, which was pretty interesting! I’m a bit weird like that! I like seeing inside my body, learning and understanding what they are looking for etc. I find it so interesting!
National Shortage
Frustratingly, my new treatment hasn’t gone quite to plan! On my last blog, you may remember me talking about my new treatment that was meant to be going ahead the following week. Well, long story short, it did not happen!
At first, the delay was because it still needed to be signed off by the D&T board. It then finally got signed off, I got the green light to start it. On Wednesday, the day ward rang me and looked at aranging a date for me to attend for my first dose. Then on Thursday, my Rhuemalotigist nurse tried to order in my injections, and found out there is actually a national shortage of Belimumab, both injections and IV. A national shortage which looks like is going on for months! Honestly, I’m heartbrocken!
So now a dicusision is going on, deciding on a plan B for me, until we can get on plan A!
Iloprost
On other news, I’m back on the urgent list for the dreaded Iloprost. Honestly, not happy about it, but I know I desperatly need it! It’s the most successful treatment out there for severe raynauds according to my consultant. And I know it does work too! But it’s only going to work well, if I get my Lupus undercontrol afterwards, and soon afterwards.
Let’s hope this plan B is a good plan B!
Here’s the current situation of my how my hands are doing, and how purple they go everything I step in to a warm bath:
That’s it from me this week! I fly out to Canada next weekend to celebrate my 2 year wedding anniversary. I’m off to Toronoto and Niagara Falls for a week. I haven’t planned a lot, as I’m just not sure how much my body is actually going to manage. However, I have just gone and upped my steroids and my Methotrexate to give my body a bit of boost. It’s only a temperory fix for holiday. As soon as I’m home, they’re both going to have to be dropped back down.
Hopefully, these dose increases will both be just enough so I can actually enjoy myself there, not be in too much pain, and give me some strength to walk around the sights of Toronoto. I’m not asking to climb any mountains or go on any long walks. I just want to be able to manage the little touristy things. Even if it means regular stops in coffee shops so I can sit down and have a rest, I’m ok with that.
I really hope the wolf doesn’t spoil this trip!
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
