Leonie
Patient-to-patient topic:
Sjögren's & Getting Others to Understand.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
Over the past 2 years, I've had so many health issues, all relatively minor but just one thing after another. My body just didn't feel right. It's only very recently that I developed dry mouth. I've had dry eyes for many years, but nothing too extreme. I was dealing with brain fog, fatigue, headaches, and tinnitus. I went to the ER a couple of years ago because one side of my face swelled up. I was told I had a blocked saliva gland. It was excruciating. Looking back, I'm sure that must have been related. I tried massage, dry needling, osteopathy, etc. I had hearing tests, CT scans, an MRI scan, an ECG, and countless blood tests. I'd have a new symptom and wouldn't tell anyone because I thought people must be so sick of my health woes. Finally, after experiencing strange mouth sensations, a doctor ran the right blood tests that led to a diagnosis.
What do you wish you knew when first dealing with this symptom/situation?
That I wasn't imagining it or bringing it on myself. I went to numerous health professionals for 2 years with symptom after symptom, and I'm sure they (and my friends and family) began to think I must be a hypochondriac. I started thinking I must be, too. I remember one doctor in particular who was so dismissive of my symptoms because my test results didn't show anything. She sent me home, and I said, 'But I'm in pain,' and she said it was a virus and it would pass.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Hylo-fresh eye drops, Xerostrom mouth spray, and I've just purchased a humidifier to use when sleeping.
What is your best advice for another patient dealing with this symptom/ situation?
I got my husband to watch a YouTube video about living with Sjögrens. I think that helped. It is so hard when you look well but feel unwell. It's hard with my husband, my kids, my work colleagues, and my friends. The only way to get those around you to understand is to talk about how you're feeling. I have a rating scale I use with my husband. 10 out of 10 is I'm feeling fantastic, and 5 out of 10 is I'm really struggling and need support, and so on.
Please finish the following sentence: "Sjögren's has taught me..."
To slow down and enjoy life.
What are your most difficult symptoms?
Fatigue, brain fog, headaches/head pressure, tinnitus, dry eyes, dry mouth, dry nose.
What do you wish people knew about your Sjögren’s?
That I may look okay on the outside but I never feel 100% well. I'm not saying it's all bad, it's just that it's never 'not there'.
How do you incorporate self-care with managing Sjögren's?
I plan to set up a routine for this but haven't as of yet. It will incorporate exercise, diet, hydration, massage, journaling, and mental health support. I'm going to speak to my employer about working flexibly.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I only recently got diagnosed and have had a fairly intense onset of symptoms in the past few months. I'm still working full-time, but I'm not sure if I'll be able to keep doing that. Emotionally, I'm normally able to be quite pragmatic about it and don't often feel too sorry for myself. I worry quite a bit about the future, though.
What is your go-to Sjögren's product?
Xerostrom mouth spray
What’s your best Sjögren’s tip?
Let people close to you know that sometimes you feel well and sometimes you struggle, and set up a system for letting them know where you're at, e.g., a rating scale and, therefore, what support you need. Support isn't necessarily doing housework. It might just be being understanding if I'm too tired to go out. Also, choose your source information carefully.
Leonie
Patient-to-patient topic:
Sjögren's & Getting Others to Understand.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
Over the past 2 years, I've had so many health issues, all relatively minor but just one thing after another. My body just didn't feel right. It's only very recently that I developed dry mouth. I've had dry eyes for many years, but nothing too extreme. I was dealing with brain fog, fatigue, headaches, and tinnitus. I went to the ER a couple of years ago because one side of my face swelled up. I was told I had a blocked saliva gland. It was excruciating. Looking back, I'm sure that must have been related. I tried massage, dry needling, osteopathy, etc. I had hearing tests, CT scans, an MRI scan, an ECG, and countless blood tests. I'd have a new symptom and wouldn't tell anyone because I thought people must be so sick of my health woes. Finally, after experiencing strange mouth sensations, a doctor ran the right blood tests that led to a diagnosis.
What do you wish you knew when first dealing with this symptom/situation?
That I wasn't imagining it or bringing it on myself. I went to numerous health professionals for 2 years with symptom after symptom, and I'm sure they (and my friends and family) began to think I must be a hypochondriac. I started thinking I must be, too. I remember one doctor in particular who was so dismissive of my symptoms because my test results didn't show anything. She sent me home, and I said, 'But I'm in pain,' and she said it was a virus and it would pass.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Hylo-fresh eye drops, Xerostrom mouth spray, and I've just purchased a humidifier to use when sleeping.
What is your best advice for another patient dealing with this symptom/ situation?
I got my husband to watch a YouTube video about living with Sjögrens. I think that helped. It is so hard when you look well but feel unwell. It's hard with my husband, my kids, my work colleagues, and my friends. The only way to get those around you to understand is to talk about how you're feeling. I have a rating scale I use with my husband. 10 out of 10 is I'm feeling fantastic, and 5 out of 10 is I'm really struggling and need support, and so on.
Please finish the following sentence: "Sjögren's has taught me..."
To slow down and enjoy life.
What are your most difficult symptoms?
Fatigue, brain fog, headaches/head pressure, tinnitus, dry eyes, dry mouth, dry nose.
What do you wish people knew about your Sjögren’s?
That I may look okay on the outside but I never feel 100% well. I'm not saying it's all bad, it's just that it's never 'not there'.
How do you incorporate self-care with managing Sjögren's?
I plan to set up a routine for this but haven't as of yet. It will incorporate exercise, diet, hydration, massage, journaling, and mental health support. I'm going to speak to my employer about working flexibly.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I only recently got diagnosed and have had a fairly intense onset of symptoms in the past few months. I'm still working full-time, but I'm not sure if I'll be able to keep doing that. Emotionally, I'm normally able to be quite pragmatic about it and don't often feel too sorry for myself. I worry quite a bit about the future, though.
What is your go-to Sjögren's product?
Xerostrom mouth spray
What’s your best Sjögren’s tip?
Let people close to you know that sometimes you feel well and sometimes you struggle, and set up a system for letting them know where you're at, e.g., a rating scale and, therefore, what support you need. Support isn't necessarily doing housework. It might just be being understanding if I'm too tired to go out. Also, choose your source information carefully.