Welcome….Lupus.
April 12, 2024
I have meant to write this post for a good year. I can’t really explain what has stopped me. Perhaps it’s because this blog is about MCTD and my identity as someone with a chronic illness has always centred around having MCTD. Then one day, about a year ago, I earned myself a new diagnosis. Systematic Lupus Erythematosus (SLE) or, Lupus for short.
Those of us with MCTD will be familiar with Lupus as our illness is often made up with a mix of symptoms from lupus, polymyositis and scleroderma. However, our blood work indicates if it’s MCTD or lupus and since I was 26, I never had any markings in my blood results for lupus.
In the first uni semester of my third year – in 2023 – I was doing a social work placement for three months full time. I’ll admit it was quite stressful and emotionally taxing and one day I started to get what felt like a usual MCTD flare where my body felt incredibly heavy, my glands went up and then fever hit. I went to bed with the intention that it would pass within 24-30 hours as that was what was standard for me.
However, five days passed and I was still cycling between fever and chills all day and night. The big difference here was I developed a chest pain, which I’ve never had before. It was stabbing and with every breath it hit me. I went to the doctors, had chest scans and blood works but nothing was showing up. Eventually I took myself to the emergency room at the local hospital because it had been well over a week of fever and now it hurt to breathe. COVID tests were all negative.
There is something validating when you finally bring yourself to go to hospital and they bring you in straight away and begin the tests. Long story short, I spent around 10 days in the hospital getting antibiotics and many tests – there were signs of pneumonia but it didn’t look too bad considering the pain I was in. Eventually, the bloodwork was sent to my rheumatologist who let me know that the MCTD had now evolved into lupus.
I feel like there is a whole other blog post about processing a new diagnosis when you have had MCTD for so long but anyway…
I recovered from that terrible flare and it’s been about a year since then. I have to say – day to day – lupus is worse. I have much worse joint pain than I ever had with MCTD. I feel like it used to be more muscle weakness and now my knees and my elbows are in pretty constant pain. It makes moving difficult a lot of the time but not enough to stop me pushing through.
I find my hands are really weak, I find it much harder to open bottles and do things I used to be able to do. I’m frustrated with myself and feel rather pathetic.
I’ve noticed brain fog more than with MCTD – I forget words to things but my husband thinks my brain is just too full with all academic readings – I’m doing my thesis at the moment for my social work degree.
I am exhausted. I am having more naps and lie downs than I ever needed.
What I do like is being able to say I have lupus. People have heard of lupus – noone has heard of MCTD. And even if they don’t understand really what it is, there is enough understanding that it is a chronic illness and it explains why I’m in pain.
I’ll try to keep you updated – I still have MCTD – I just have a fun, new diagnosis as well.
MCTD/Lupus – The Truth, The Challenge, The Hope.
Those of us with MCTD will be familiar with Lupus as our illness is often made up with a mix of symptoms from lupus, polymyositis and scleroderma. However, our blood work indicates if it’s MCTD or lupus and since I was 26, I never had any markings in my blood results for lupus.
In the first uni semester of my third year – in 2023 – I was doing a social work placement for three months full time. I’ll admit it was quite stressful and emotionally taxing and one day I started to get what felt like a usual MCTD flare where my body felt incredibly heavy, my glands went up and then fever hit. I went to bed with the intention that it would pass within 24-30 hours as that was what was standard for me.
However, five days passed and I was still cycling between fever and chills all day and night. The big difference here was I developed a chest pain, which I’ve never had before. It was stabbing and with every breath it hit me. I went to the doctors, had chest scans and blood works but nothing was showing up. Eventually I took myself to the emergency room at the local hospital because it had been well over a week of fever and now it hurt to breathe. COVID tests were all negative.
There is something validating when you finally bring yourself to go to hospital and they bring you in straight away and begin the tests. Long story short, I spent around 10 days in the hospital getting antibiotics and many tests – there were signs of pneumonia but it didn’t look too bad considering the pain I was in. Eventually, the bloodwork was sent to my rheumatologist who let me know that the MCTD had now evolved into lupus.
I feel like there is a whole other blog post about processing a new diagnosis when you have had MCTD for so long but anyway…
I recovered from that terrible flare and it’s been about a year since then. I have to say – day to day – lupus is worse. I have much worse joint pain than I ever had with MCTD. I feel like it used to be more muscle weakness and now my knees and my elbows are in pretty constant pain. It makes moving difficult a lot of the time but not enough to stop me pushing through.
I find my hands are really weak, I find it much harder to open bottles and do things I used to be able to do. I’m frustrated with myself and feel rather pathetic.
I’ve noticed brain fog more than with MCTD – I forget words to things but my husband thinks my brain is just too full with all academic readings – I’m doing my thesis at the moment for my social work degree.
I am exhausted. I am having more naps and lie downs than I ever needed.
What I do like is being able to say I have lupus. People have heard of lupus – noone has heard of MCTD. And even if they don’t understand really what it is, there is enough understanding that it is a chronic illness and it explains why I’m in pain.
I’ll try to keep you updated – I still have MCTD – I just have a fun, new diagnosis as well.
MCTD/Lupus – The Truth, The Challenge, The Hope.
naomijoyce83
MCTD-The truth, the challenge, the hope 