Happy Father’s Day to all the wonderful dads out there! But also sending my love to any of you who can no longer spend the day with yours.
I’ve got mine coming over for tea tonight. I’ve decided to cook him a lovely tea. I say lovely, but honestly, I’m not the greatest of cooks! However, it will just be lovely to see him and my mom. They’ve both just been away to Scotland hiking. Backpacking for days on end, and canoeing in the Scottish Lochs with seals! What an experience that must have been! (Yes, my parents don’t have normal holidays! I guess this is where I get my adventurous side from!)
Last weekend, we had an incredible time in the Lake District with Casper, hiking Wainwrights. It was hot though! We camped at 300 metres above sea level, and still, it was too hot! But not complaining! It was nice to have clear mountain tops for miles and miles, and be able to sit outside and enjoy tea without it being too cold! However, one mistake I did make, I decided to pack curry for tea! Why I decided to pack that, I do not know! When it’s 25 degrees, curry is the last thing you want! So, we ended up going into Keswick for a lovely tea. We went to The Round, and honestly, the burgers were incredible! Not cheap, but highly recommend it! They have a fantastic selection of meat burgers, vegan burgers, and even offer gluten-free burger buns!
Here’s a little photo dump of our weekend in the Lake District:
If any of you are heading to the Lake District this summer and are looking at an easy Wainwright to tick off, Fleetwith Pike, from Honister Slate Mine is perfect! As you are already high up, it’s only a small climb to the summit and the views over Buttermere are breathtaking!
Here is my hiking guide for anyone who may be interested:
Fleetwith Pike: The Easy Route
My Hosptial Appointment
This week I had my hospital appointment with my Rheumatologist specialist nurse. It was a very positive appointment! Blood work is looking a lot more stable. Still can’t go back on to my Hydroxycholorquine, as we are still waiting on my eye test results from the eye hospital. My steroids, she said no pressure in reducing them. Ideally, it would be good to get my down from 7mg to 5mg, but there’s no rush, no pressure. Just do it when the time is right, and my body is feeling strong. I will try again, but not for a while. I just want to enjoy the summer first. Enjoy being well, enjoy feeling strong to do the things I love most!
Clinical Trials
I don’t know if you remember a while back, they talked about trying to get me on some biological treatment However, due to funding etc, they couldn’t.* So now my team has a new plan to try and get me onto them. They said if I’m willing to join a clinical trial and we have proof the medication is working, once the trial is finished they should then hopefully be able to get me funding to continue on the medication. So I’ve agreed to go ahead. Not sure what biological treatment it will be, nor if it will work. However, if it does, it could be a game-changer for me! A lot of the new medication is a lot kinder to the body than the older stuff which I take.
*There’s very little biological treatment out there that’s actually approved for Lupus/Sjogren’s. So, therefore, a lot of it is still in the clinical trials stage. They also struggle to get funding for the biological treatments as it’s very expensive, with very little evidence if it truly works or not. Often, you will only get offered it when all over treatment has failed. For me, the treatment I’m on does works to an extent, hence why they have been unable to get funding. So currently, clinical trials are my only option.
Connective Tissue Disease Clinics
My nurse mentioned they are looking at setting up some connective tissue disease clinics, to run along the side of the clinical trials, which I will be invited to. This is good new, as it means hopefully, I will get more support when needed. For anyone who doesn’t know, Lupus and Sjogren’s are both classed as connective tissue diseases.
On other news, there’s still no news of my skin biopsy results. My nurse said, apparently they have been taking a while to come back.
That’s it from me this week. Hope you are all having a lovely weekend. Still well and stay cool in the heat.
Oh, if you love a good poppy field like me, this is the time to get out and see them! I saw one yesterday my lovely little morning stoll, close to home. I was on cloud-9. The little things in life makes me happy!
Until next week,
Goodbye for now.
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
