Living with an autoimmune disease (sjogrens)

Hi, my name is Nina and I suffer with Sjogrens autoimmune disease and I want to talk about what it's like living with an autoimmune disease. Sjogrens is an autoimmune disorder that messes with the salivary glands and the eyes as well. It messes with certain glands where then causes dryness, but there's so much more to it. It can affect you neurologically, gastro, skin, dry everything, your scalp. It's something that you have to maintain between eye drops, making sure you have great dental care, making sure you're following up with your rheumatologist. There's a lot of extra steps that you need to take between what's most important, really, having a rheumatologist, that's one, the autoimmune doctor. Then making sure you follow up with your dentist, ophthalmologist to make sure your eyes are being checked constantly. Sorry, toddler. Ophthalmologist is very important because if you're on hydroxychloroquine, which is an autoimmune medication, you need to get your eyes checked constantly. You should be getting more cleanings than a regular person, not just twice a year, sometimes up to four times a year. Someone who has this disorder may be suffering with different symptoms than what I do. But from what I experience, I get dry eye, dry mouth, really severe dry skin, sometimes cracked, I have to constantly moisturize. Severe chronic fatigue, brain fog. Now that I'm taking hydroxychloroquine, it's really helped me control my symptoms, I'm feeling somewhat better some days compared to what I used to be. My doctor upped it to twice a day. What is it like to live with Sjogrens? One day you feel fine, the next day you don't. If you do something more than usual, like an activity that you stay out in the sun too long, you're gonna feel more exhausted the next day. On the weekends for me, one day is an out day, one day is an in day. I can't do both, both days because I have no time to, basically, feel better and rest and have time for myself because I need to recuperate from the day before because a lot of physical activity can flare me up. Self-care is very important with an autoimmune disease, listening to yourself, listening to your symptoms, knowing what a trigger is, is also very important and a day in the life of a person with an autoimmune disease is something we need to track on a daily basis. So if you're somebody that has, you know, Sjogrens disorder and you're looking for tips or tricks on what could be helpful, everybody is different. Like what I suffer with, I've learned in this journey so far that somebody else may not be suffering with. But everybody who has Sjogrens may experience more symptoms or less symptoms than the next person. But below in the comments, I want anyone to share with me their routine of what they do in the day of a life of somebody with Sjogrens. What tips can you give others to help them? Because that's why I want to share this, so we can help each other.