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What’s your favorite kind of music to listen to on a flare day?

Music seems to always help me on flare day. What’s your favorite song or type of music to listen to? #LivingWithPOTS #potsisreal #potswarrior #flareupdays #flareday

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How to explain what POTS feels like #LivingWithPOTS #potsisreal #potswarrior #potsdoesnthaveme

People ask me what a POTS attack/ flare day feels like, this is it.

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Living with POTS is no joke! Every day you feel like crap but you have to keep going forward with your life. You are so strong. What healthy person do you know can walk around and look happy, but on the inside they are about to pass out, their chest hurts, they are about to vomit, they are so tired, they can’t think well, their head is pounding, yet they just look like a normal healthy person? Dang people!
#Spoonie #potswarrior #PosturalOrthostaticTachycardiaSyndrome #potsisreal #potsiestrong #LivingWithPOTS #potsdoesnthaveme #POTSLife #AutonomicDysfunction #POTS

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How do you........

Start finding a new primary doctor when you have moved from one state to another?

Address the fact that when you go see a doctor finally after a 3 month wait you are told you have to see a sleep specialist to get your controlled sleep medication, a behavioral specialist to get your controlled add medication, a pain doctor to get your controlled pain medication all because she doesn’t feel comfortable doing anything regarding your medications because of this disease. BTW you waited for this appointment to get medication refills that you have now been out of the whole time you have waited and these specialists have wait times. I sent all my records to them and said I needed medication refills for specific medications for a specific disease because I was out. I also have no insurance due to moving and had to pay over $175 just to be told all of this. I know I need to find a new doctor but I have no medication and there are wait lists for establishing new patients. I don’t know how to deal with this or how to make sure it doesn’t happen again. Any ideas, or help would be great! Thank you and Merry Christmas!
#MastCellActivationDisorder #Mastocytosis #ChronicIllness #ChronicPain #Flareup #PatientAndDoctorExperiences #LivingWithPOTS #potswarrior #HeartConditions #AutonomicDysreflexia #RareDiseases #RareDisease #fedup #dontknowwhattodo #GastroesophagealRefluxDisease #Anxiety


How can I better explain my POTS and episodes to my band director?

My band director is always there for me no matter what. I have POTS and weird episode things. I don’t know how to explain to him what he needs to do when I’m not doing well. How should I go about this?
#LivingWithPOTS #Dysautonomia #potswarrior #POTS