Thank you so much for all your responses!! @Always hoping honestly just finding this website and your responses helped. It was really difficult feeling like I was going through it alone, even though I have such a supportive environment. Still, I found myself having trouble articulating how I felt when I got extremely symptomatic, or when I felt great all day and suddenly felt sick and had to leave an outing or bail on my friends. My doctor is a good listener, and I think if I keep doing my research I can get her to monitor certain things or provide more support. She's trying to get me in to IV treatment without having to go through the ER which is a promising sign.
@JaneEyre9 first of all - I LOVE Jane Eyre! lol. I must have read that book 20 times and I am pretty sure I watched every show and movie version out there. Thank you for your advice, I had been trying to find a nutritionist because like you I felt that I could probably support my body better if I ate well. I have not been able to find a good one. No one that even knows POTS or has any idea what I am going through. So far, it's been trial and error. I figured out sugar made me so sick so early on. I cut refined sugar out completely and most other sugars too because even fruit is sometimes too much when I am symptomatic. I used to be vegan before this whole thing started, now I feel so much better on a high lean protein diet. I haven't tried functional medicine because unfortunately, the ones I have found are not covered by my insurance. What's a good whole-foods multivitamin I could take you think (if you don't mind me asking)? I worry about all the synthetic kinds.
@Hhh16 right exactly - I got turned away from ERs for not "bleeding" or "vomiting" (even though my symptoms do include a lot of the latter.) When I was so symptomatic, a doctor told me "what are you so miserable about, it's not like you have cancer." I am so grateful I do not have cancer, but no medical practitioner should ever make a patient feel so invalidated. My latest flare up started end of September as well! With a few good days here and there. I am sorry about your work and school. I hope that you don't have to lose either. Can you telework some days? I am actually a doctoral student and this semester, instead of going to class, my professors have kindly agreed to let me skype in for reading courses. I have to go back in the Fall though, or I lose my stipend.