julz's interview
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How did all start?
I thought I was malnourished then I started having syncope episodes at work I went to a neurologist and heart doctor and they suggested to get tested for pots. I didn’t notice my symptoms until they were severe everyday all day.
Do you already have a diagnosis? How long did it take you to get it?
Yes it took me almost 3 years to start getting treatment and testing
For what medical specialties have you been treated? What has been the most useful specialty for your?
Salt tabs healthy diet exercise increase water intake 20mmhg compression stockings follow ups often emergency room visits as needed and coaching by doctors. Coping skills learned through support groups have benefited me most while the doctor continues to find the best treatment plan for me.
What has been the most useful thing for you so far?
Learning Coping skills and strategies. Journaling writing and support groups and apps.
What have been your biggest difficulties?
Physical activity of any kind being normal is not an option so pushing myself to be normal has caused more problems than anything. Emotionally this is horrible so seeking counseling and support is a must. It hurts and is emotionally exhausting. This health issue is debilitating. Don’t give up.
How has your social and family environment reacted? Have your social or family relationships changed?
I haven’t spoken with many people about this yet. 11 people know and 8 are super supportive and try their best to help and understand.
What things have you stopped doing?
Everything. I can’t clean shower socialize. Life is not easy right now. I am spending most days on my couch and finding hobbies to do while sitting.
What do you think about the future?
I’m not sure I live in the now to keep hope.
So far, which years have been the best years in your life? What have you done during them?
2018 right before I started having symptoms. I spent time with my loved ones
What would you like to do if you didn’t have your condition?
Travel hike bike camp kayak fish hunt and spend time outdoors
If you had to describe your life in a sentence, what would it be?
My life is hard but I’m staying positive even if it’s more negatives than positives.
Finally, what advice would you give to a person in a similar situation?
Do not give up and find support groups and the biggest one is learn everything you can about your health condition.
