Post Appointment Update.
As previously mentioned, I had a hospital appointment yesterday to discuss the future of my treatment. So I thought I should write a post about it.
I was really anxious about going yesterday as I was meeting with a consultant that I don't know. I've apparently met him before, last year. But I was high on pain meds and quite seriously ill at the time, so I have zero recollection of it. I probably made a tit of myself. But he was lovely. I had no reason to be nervous, as he's an absolutely lovely doctor.
The reason that I was meeting with a new consultant is that my old one wasn't... great. I met her less than five times in the five years I was under her care, all the while I was seriously ill. She would forget to pass on messages, my treatment wasn't prioritised when it needed to be, and in the end one of my surgeons (who fully deserves a massively long post about him at some point) had a bit of a shout at her. So long story short, I have a new consultant.
Anyway, the way these appointments go is that first of all you get seen by a nurse, who checks your weight. Sometimes they will check your blood pressure and height too, but that depends on the reason that you're at the appointment. For myself, it tends to only be weight. Usually, this doesn't bother me, but whilst on steroids it's not the nicest experience! Current weight stands at 70kg. This is the heaviest I've been in my entire life, and I have good old steroids to thank for that. Luckily, I'm only a week away from finishing them now though, so it's no big deal. It'll drop back off. And if it doesn't I'll just be warm for the winter.
After seeing the nurse, you return to the waiting room until it's time to see the consultant. A friend came with me yesterday so that I didn't have to sit and wait alone, so he distracted me by making awful jokes that only he laughed at. When I was called into the room, I was instantly at ease with this consultant. He asked how I was feeling, and it's always weird for me to go from what I tell everyone else which is either "I'm fine" or "eeeeh" to telling him that actually I'm struggling a lot and the pain gets unbearable at times and I want to curl up in a ball 24/7 and never leave my bed.
They then ask a series of standard questions;
What is your output like? Loose.
Energy levels? What energy levels.
Temperature? Sweating a lot, always too warm, want to walk around naked. Next second huddled in blanket. Could just be the British weather.
Appetite? High because steroids, but the concept of food makes me feel nauseous.
Pain? Is there an alternative state.
Then he decided that maybe it's time for me to go back onto Biological treatment. This wasn't a surprise to me, as I'd been expecting it for some time now. A Biological drug is one that's made from a living organism. They can often be quite tough on your body, and give a lot of side effects. But they are effective. The one he has opted for is called Humira. Humira is a drug that is administered once a week through a pen injection. This means I can be taught to do it from home, and won't have to visit a nurse every week to have it done.
I have previously been on Humira, and it didn't work for me. This doesn't mean it won't now though, as my condition is ever changing and developing, meaning that something that worked before, might not now, and vice versa. Whilst knowing that it has previously not worked for me makes me anxious, I feel I can trust this consultant to make the right decision with my treatment.
Hopefully treatment will start within the next few weeks, as first the consultant has to bring it up in a weekly meeting to get it approved for me. Then the nurse will book me into the clinic where they will teach me to inject and give me the loading dose, which is four injections. But for now, I've just got to wait it out and hope it doesn't take too long.
Love and shit x
I was really anxious about going yesterday as I was meeting with a consultant that I don't know. I've apparently met him before, last year. But I was high on pain meds and quite seriously ill at the time, so I have zero recollection of it. I probably made a tit of myself. But he was lovely. I had no reason to be nervous, as he's an absolutely lovely doctor.
The reason that I was meeting with a new consultant is that my old one wasn't... great. I met her less than five times in the five years I was under her care, all the while I was seriously ill. She would forget to pass on messages, my treatment wasn't prioritised when it needed to be, and in the end one of my surgeons (who fully deserves a massively long post about him at some point) had a bit of a shout at her. So long story short, I have a new consultant.
Anyway, the way these appointments go is that first of all you get seen by a nurse, who checks your weight. Sometimes they will check your blood pressure and height too, but that depends on the reason that you're at the appointment. For myself, it tends to only be weight. Usually, this doesn't bother me, but whilst on steroids it's not the nicest experience! Current weight stands at 70kg. This is the heaviest I've been in my entire life, and I have good old steroids to thank for that. Luckily, I'm only a week away from finishing them now though, so it's no big deal. It'll drop back off. And if it doesn't I'll just be warm for the winter.
After seeing the nurse, you return to the waiting room until it's time to see the consultant. A friend came with me yesterday so that I didn't have to sit and wait alone, so he distracted me by making awful jokes that only he laughed at. When I was called into the room, I was instantly at ease with this consultant. He asked how I was feeling, and it's always weird for me to go from what I tell everyone else which is either "I'm fine" or "eeeeh" to telling him that actually I'm struggling a lot and the pain gets unbearable at times and I want to curl up in a ball 24/7 and never leave my bed.
They then ask a series of standard questions;
What is your output like? Loose.
Energy levels? What energy levels.
Temperature? Sweating a lot, always too warm, want to walk around naked. Next second huddled in blanket. Could just be the British weather.
Appetite? High because steroids, but the concept of food makes me feel nauseous.
Pain? Is there an alternative state.
Then he decided that maybe it's time for me to go back onto Biological treatment. This wasn't a surprise to me, as I'd been expecting it for some time now. A Biological drug is one that's made from a living organism. They can often be quite tough on your body, and give a lot of side effects. But they are effective. The one he has opted for is called Humira. Humira is a drug that is administered once a week through a pen injection. This means I can be taught to do it from home, and won't have to visit a nurse every week to have it done.
I have previously been on Humira, and it didn't work for me. This doesn't mean it won't now though, as my condition is ever changing and developing, meaning that something that worked before, might not now, and vice versa. Whilst knowing that it has previously not worked for me makes me anxious, I feel I can trust this consultant to make the right decision with my treatment.
Hopefully treatment will start within the next few weeks, as first the consultant has to bring it up in a weekly meeting to get it approved for me. Then the nurse will book me into the clinic where they will teach me to inject and give me the loading dose, which is four injections. But for now, I've just got to wait it out and hope it doesn't take too long.
Love and shit x
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