Today is the last Sunday I will be writing this blog as a Miss Pedley! Saying that I might actually keep my name the same on social media, as I am known as Emma Pedley. I really don’t want to start confusing everyone!
But anyway, what I am trying to say is, I get married next week!!! I cannot believe it! My mom keeps saying to me, she can’t relax until the moment she sees me walking down that aisle!
After the wedding being postponed twice, and covid cases currently sky high, we all hope nothing else gets in the way from preventing it now from happening. My family are isolating as much as they can from now till the wedding, just so they reduce any chances of catching Covid. Alex is working from home all next week. I have to go out to work, as the nature of my job, I can’t work from home. But that’s ok, I wear an FFP3 mask which keeps me safe. The food shop will be done online. I do have to go to doctors on Wednesday, but it’s pretty safe there. Most of the time I’m the only one in the waiting room. It’s great! Basically, none of us are taking any chances to catch it! Not sure what we would do if one of us caught it? Everyone would have to celebrate our wedding with the bride and groom on zoom! I mean, it would be a wedding to remember right?
My Hospital Appointment
I wasn’t actually meant to be at my rheumatology appointment this week. It was meant to be there next week. However, on Monday I got a phone call telling me my appointment has to be cancelled for the 22nd as my consultant has to go cover on the wards. My heart sank when I heard this. I needed this appointment and didn’t want to wait longer for it. However, to my surprise, she asked if I could come on Tuesday. I was grateful and of cause agreed to it.
Whenever you attend appointments, you have an idea in your head, on how you would like them to go. I was hoping to be talking about this new treatment and getting funding for it, with a plan on coming off my steroids. However, sadly this wasn’t the case!
Basically, the new treatment isn’t going to be happening anytime soon. My liver function isn’t very good, so he wants to get to the bottom of this first. While I was there, he did send me off for lots of extra blood tests on my liver, to see what is going on with my liver. I’m worried it’s my Methotrexate damaging my liver, as that was one of the things I warned about when I first started on the treatment. I mean it is a cytotoxic I am injecting into my body each week, so in one sense I wouldn’t be surprised. I just really hope not, because it’s the one drug that makes me feel well. I really can’t afford to come off it!
We then went on to talk about my steroids and the long period of time I have been on them. We all know I have been on them way too long, and the likely hood of long-term damage to my body. He said at the moment, coming off them isn’t an option. He doesn’t think I’m well enough to reduce/come off them. Also, he doesn’t want to reduce them until he’s sent me for a special test. This test does have a name, a very fancy name, but too fancy for me to remember it! Basically, he’s worried my adrenal glands (I think it’s them) might have stopped producing my own cortisol (I think that’s the hormone). When on steroids for a long time, your body becomes dependent on them. Your body gets used to the drug coming into your body each day, and over time, it decides it doesn’t need to make its own cortisol anymore. I guess it’s like if somebody was giving you free soup every day, you wouldn’t feel the need to make your own anymore, so you would stop. But then the issue arises on the day you don’t get that free soup, you don’t have any soup, and will go hungry. It’s like that with my cortisol. If I stop my steroids or reduce them, and my body isn’t making any in replacement, I will become very poorly very quickly. So before I mess with my dose, it’s important for me to have this fancy test to see if my body is actually making my own cortisol still. If it isn’t, I will get referred to see someone in endocrinology, where they might be able to put me on some hormone replacement or something.
We then went on to talk about my rashes and the sun. He reminded me how photosensitive I am. I said to him though, what I meant to do, hideaway every time the sun comes out? He agreed with me, I can’t do that, I have to have a life! I explained to him how I love being in the outdoors. I don’t go out to sunbath, but I do spend full days out hiking in the outdoors, doing what I love. I said to him, I will just have to accept having rashes, and feeling unwell from the sun. He did talk about other tablets I could go on, which may help to prevent the rashes. Not sure if it will prevent my illness from flaring up, which bothers me more? But he then also said it’s probably not a good idea at the moment with my stomach the way it is.
Which then led to conversations about my stomach, and all my GI problems. I was in the room with him for over half an hour! He was brilliant, and covered every fine detail with me, with examinations and everything. He is a great rheumatology consultant. I’ve had him since I was 21 years old, and he remembers everything about me.
My stomach problems he’s concerned about. At first, he was worried my liver could be causing my stomach issues. But I said I’m almost certain it’s not, as I notice foods and tablets can make it worse. I also explained to him I’m currently not on my iron tablets as I just can’t tolerate it with my stomach, so my iron levels will slowly be dropping.
He wants to write to my Gastro consultant telling them more needs to be done, as I can’t live like this. I told him, gastro are no use. They won’t do anything as they blame it on my meds, which they can’t touch, as there prescribed by you. So I’m not sure what happening there. He reckons Gastro needs to help me more, but Gastro are saying they can’t do anything else for me. I can’t currently come off any more meds. The treatment my specialist nurse hoped to have me starting on, is currently not an option. So basically, I continue living with my poorly stomach, until somebody does something about it. He also wants to know why gastro feels the need not to operate on my hiatus hernia, considering how much I am suffering. But to be fair, I rather not have an operation and I do believe that’s not causing the biggest of my problems. But I could be wrong!
I also mentioned how I was meant to be having a biopsy on my rashes with dermatology, but haven’t heard anything since last April. Not sure what’s happened, have I just been lost in the system? So he’s writing to my dermatology consultant to try and chase that on. Dermatology wants to double-check the rash is a lupus rash and not another rash that I can’t remember the name of. But my rheumatologist said he’s 99% sure it’s a lupus rash, as it’s unlikely I would have the other illness as well as lupus, but it’s good to keep open-minded.
Before we rounded up my appointment, we talked about my sinuses and how I still haven’t seen my ENT consultant since 2018. Which is far too long! Again, I feel like I’ve got lost in the system with them too. So he’s writing to them to see what’s going on.
So basically, I left the appointment feeling pretty deflated from the news. Grateful I have a fantastic consultant who cares about my quality of life, chases up stuff with other consultants, but I feel like I’m no further with my stomach issues, nor coming off steroids. And with my liver, well that news was a complete shock. What annoys me more, doctors have seen my bad liver results on my blood test, yet done nothing about it. It’s a good job my rheumy is on the ball!
The news of this appointment did hit me hard. Somedays, you forget how poorly you are, the seriousness of your illness, the damage the medication is doing to your body. You wake up each day, you pop the same pills day in day out. You suffer from the same aches and pains. You think nothing of it, it’s just your life. Life without medication, pain, and fatigue is a distant memory. It’s only when you attend these appointments, the reality hits you.
Update of Verrucca
Let’s just say the gel the doctors prescribed me is working. It’s literally burning the top layer of my skin off! Basically, my foot is quite sore to walk on. I’ve dressed it with dressing, and put a thick woolly pair of socks on for extra padding, just to help to make it less painful to walk on. It’s ok, I’m not walking down the aisle or anything next week! I mean what a time for it to happen! But hopefully, in all seriousness, it will be healed by Saturday. Today, to be fair they are looking a bit better. So they are healing. Even without the gel, my foot was getting very sore to walk on from the verrucas, so there was no win-win situation about it. Even if they are not healed, I will not let them ruin our mini-honeymoon. I will walk in pain if I have to. But like I say, are they starting to heal, so hopefully in a week’s time, they will be fine. Let’s stay positive!
Here’s a lovely photo of what my foot looked like Thursday night:
Anyways, that’s it from me this week. I will be taking the next two weeks off from my blog, to enjoy our mini-honeymoon up in the beautiful Scottish Cairngorms, as a newly wedded couple. We are going up in Casper, who now has a fully working diesel heater, thanks to Alex and my dad. We’ve also managed to get hold of two full gas bottles, so we can cook and run the fridge, which is kind of important too! We’re planning to do a bit of skiing, tick off some Corbetts (not Munro’s unfortunately as there’s too snow, and require ice axes and crampons to climb them, which we are inexperienced with), and hopefully if we get lucky, will might even catch the northern lights dancing over the park! Now that would be perfect!
For anyone who doesn’t know, our actual honeymoon is in may, Route 66! I cannot wait! This is why this is just a mini-honeymoon. But even though it’s just a mini-honeymoon, it’s a fun trip in Casper, and it’s going to be epic! Well, just as long as we don’t end up running out for diesel, with all the mad panic of diesel buying that’s been going on this week! Drives me mad! If people didn’t panic buy, there wouldn’t be a diesel shortage. People bring the shortage on themselves.
Anyways, that’s my rant over diesel over!
See you all in two weeks,
Goodbye for now,
Emma
xox
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