Happy Sunday guys! Hope you’ve all had a great weekend!
I was at Alex’s work Christmas party last night. Always a great night! We had a lovely 3-course meal, followed by some good entertainment. Then today we headed into a town called Beverley, in East Yorkshire, and had a potter around the Christmas Market. Honestly, it was one of the best markets I’ve been to in a few years! Full of so many lovely stalls of hand-made products. We bought ourselves a little Gnok on a pair of skis. We love buying a little souvenir for each Christmas Market we visit. Every year when we get the Christmas decorations out, it’s just so lovely looking back down memory lane.
Cryotherapy
Since the end of August, I’ve been attending cryotherapy sessions for my verrucas on my feet. Sadly, it’s done absolutely nothing!
On Friday, when I attended my session, we discussed the plan moving forward. He said we could keep going with the cryotherapy, but he was worried all he was doing was causing me more and more pain with no gain. He said, it hasn’t worked so far, therefore, it’s unlikely to work at all. He explained how it often doesn’t work, hence why they rarely offer it as treatment on the NHS.
After a bit of a discussion, I agreed, there was just no point to keep going with the cryotherapy. It’s not comfortable to have, and honestly, right now, I’m suffering that much with Chilblains, I really didn’t want to be in any more discomfort! Instead, he has referred me back to my GP to be referred to a podiatrist. They will file my verrucas weekly, to help to manage the pain.
Hopefully, one day, my own immune system will just naturally get rid of them! Sadly, right now there’s no cure.
I took these photos at the start of my treatment of one of my feet, hoping as the sessions went on, I would be able to compare the differences. Sadly, 3 months on and there’s no change!
A Date For Illoprost
I’ve got my date for my Illoprost infusions. I go into hospital on the 18th of December for 5 days. Honestly, it couldn’t have come at a worse time! On Friday the 22nd, I’m literally going to be leaving the hospital after a 6-hour infusion and heading straight to the airport, as we fly to Norway early Saturday morning for Christmas! Every time I’ve had Illoprost infusions, I’ve felt unwell afterwards for a week or so. So unfortunately now, there’s a good chance I’m not going to feel well in Norway and be unwell for Christmas, again!!!!
For anyone who doesn’t know, last Christmas I was in New York feeling so poorly with Covid! I didn’t know I had Covid, until I got home and tested after my mom had tested positive. I thought I just had one very nasty cold! Alex had what we thought was a cold before we went away. He had done tests, but they were negative. So I just thought I had what he had! When we got home and tested, we both tested positive!
Travelling Gives Me Such An Adrenaline High
Honestly, still today, I do not know how I did what I did in New York. I nearly passed out in the 9//11 museum, and nearly throw-up while watching a show at Radio City. But no matter how ill I felt, I kept going and going. Whenever I travel, I’m on this adrenaline high. Honestly, I think it was that which kept me going the whole time in New York! I remember stepping on the plane coming home, and telling myself, I’m actually grateful to coming home, I’m too exhausted for anymore! That’s never me! I normally have to be dragged onto the plane to come home!
Always Have Two Plans
It’s very frustrating! I need this Illoprost desperately. I can’t delay it till January. My fingers and toes will only get worse, and more painful. So just have to except Christmas 2023 is probably not going to be great health-wise, but as always, I will not let it ruin my time in Norway! I will find happiness in the things I can, and I will just try and block out the angry wolf that’s howling away at me. We’ve got a lovely 3-hour fjord cruise booked on Christmas Day, so even if I’m not feeling well, it’s ok, all I have to do is sit and enjoy the views.
To be fair, I’m very good at adapting plans to the wolf when I travel. I always have a plan A and a plan B. I always plan for the wolf to have paddy when I travel. It’s just frustrating! I rather be away and not be ill, and does make me so sad. But unfortunately, there’s nothing I can do. that’s life living with the unwanted wolf!
Other News
I only managed one week off my Methoretrate after my Covid vaccine, before my Lupus started flaring. Ideally, you need two weeks off to create a good count of antibodies, but it would have been more harmful allowing my Lupus to flare. So deciding to inject myself after one week was the most sensible decision.
Overall with the wolf, I’m starting to feel a little bit stronger. The higher dose of Prednisolone is helping. It’s given my body a bit of a boost, allowing me to have the strength to enjoy some of the festive season. A month ago, I would have probably struggled to walk around the Christmas Markets, today I was ok. But even though my higher dose of steroids is helping, it’s only a short-term fix. Being on this higher dose is not ideal at all. I’m only on it temporarily until I get some approval for biological treatment.
GP Calls On A Sunday Night
That’s it from me this week! I’ve got my lung function test on Wednesday at the hospital. I’ve also got my GP ringing me tonight to discuss my letter from Rheumatology. Not sure what there is to discuss but what’s more odd, my GP likes to sometimes work overtime on a Sunday night!
Next week, I’m going to enjoy my last week at home before Christmas. I’m going to try and forget about my Illoprost infusions until Sunday when I have to pack a bag for the hospital and get Netflix content downloaded offline to keep me occupied on the long days in the hospital. I guess one positive about going into the hospital at Christmas, I’ll actually get a chance to watch the long list of Christmas movies I never normally get a chance to watch!
Until next time,
Goodbye for now,
Emma
xox
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