Hello, long time no speak! Hope you are all well! I decided to take an extra week off from my blogs after my trip to Canada.
Our trip to Canada was amazing, despite my health not being as strong as I would have liked. We made the most out of the bad situation! I’m not one to put my life on hold, while things get figured out with my health. Instead, I adapt to what I can do at the time, and accept what I can’t do.
I noticed I struggled a lot more with jet lag than normal. My days out there were a lot slower pace than normal. We didn’t see and do everything. We had a lot of early nights and slow mornings. And I spent a fair few days relying on a lot of pain medication. But despite how different things were to previous travel when my body was stronger, I was just grateful to be out there, seeing and doing what I did. One day, this might no longer be an option. So anything little I can still do right now, I grab and hold onto.
Here’s a little photo dump of our week in Canada:
Still No Update
I had an appointment with one of my Rheumatology nurses this week, regarding my treatment moving forward. Unfortunately, there wasn’t much positive news from the appointment. Regarding the Belimumab, the UK still can’t get hold of it and not sure when they will be able to. It could be months and months!
Plan B, well there doesn’t seem to be one at the minute! But I have requested for my Methotrexate to be upped, so now they are looking into that. I just want something to improve my quality of life a little.
When I was in Canada, I had upped my steroids, which gave my body that extra bit of strength to enjoy life a little bit more. It was great! It made me feel more me again! But of course, staying on the higher dose is not an option! Since I’ve been home, I’ve had to drop them back to down to my maintenance dose. It’s been heartbreaking to do, but I’ve had no choice! I just want something like my steroids, but safer to be on long term. Something that will help me feel a bit stronger in myself. Just enough so I can do a bit more of what I love!
I Was Soooo Happy!
On holiday, we went for a little hike to a waterfall. It was only a short 1.5-mile walk in total. It’s nothing! But it was the first hike I had managed since January, thanks to my higher dose of steroids. I was soooooo happy! It made realised not only how much I had missed it, but how much getting out for walks in the country fills my soul. It was the first time since my trip to the Lakes I had back in January, I felt truly happy again!
That walk has left me feeling pretty emotional! Not only has it left me craving more, but it’s also left me feeling pretty heartbroken! Heartbroken, I’ve been too unwell to do what I love most, thanks to the wolf! I’m now literally begging my hospital team to find something to improve my health just a little so I can get out in the countryside for walks. I’m not asking to be able to go on big 8-mile hikes up mountains, even though that would be a dream! I just want to be able to get out this spring and enjoy little walks in the countryside. Is that really asking for too much?
Here’s the cool waterfall we walked to……..
It had an eternal flame next to it, which has been burning for thousands of years! Pretty incredible right?
Iloprost
This Monday, I head into the hospital for another round of Iloprost. It’s going to be a long 5 days of discomfort, but it’s very much needed!
For anyone who doesn’t, Iloprost is used to treat severe Raynauds. When you have Iloprost, you have five infusions, on five consecutive days. Each infusion lasts six hours. The infusions do not make you feel well at all! You start on a low dose, and slowly throughout the infusion, they increase it. As they increase it, the more poorly you feel! They do give you anti-sickness and pain meds, which help a little. But a lot of it is down to your mind, and just pushing yourself through it! After each infusion, they give a two-hour saline flush. During this time, the Iloprost side effects wear off, and you start feeling more human again! Only then to have to repeat it all the next day!
I really hope this time, it lasts a little longer! Most people have it yearly, some twice a year. My last dose was only in Decemeber! I am a bit concerned, as my illness is still very active and not undercontrol. Which means, there is a high chance the wolf is just going to attack my blood vessels again and cause them to narrow back down. I was hoping things to be a bit more under control before going for this round. But due to the national shortage of the Belimumab, things haven’t gone quite to plan! So we will see what happens!
That’s it from me this week.
Until next time,
Goodbye for now
xox
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