Update: Cardiologist Appt. 10/23

It is always reassuring when a doctor says to you, "the medical professionals don't really know what POTS is," or "doctors don't really know what this is." I got that at my latest cardiologist appointment on Friday. Although those things were said that day; it was probably one of the best appointments I have had. It wasn't the best because they reassured me and gave me a another med to control my symptoms better. It was the best because the doctors listened to me and they were honest with me about my condition. I know they had some cancellations from earlier that day but it gave me more time for my doctors to actually sit down and have a conversation with me about my POTS. The first doctor actually said to me that he couldn't imagine having POTS and going to college because college is hard enough as it is. I think that was the first time I have ever gotten empathy from a doctor about my POTS. I have gotten sympathy from doctors but never empathy. I was also put on another medication, it was the same medication that I was taking for two months this summer, Midodrine. My internal doctor told me not to take Midodrine while taking Fludrocortisone but my cardiologist said that it would be fine. My internal doctor told me that because he is a third year med student and is following under an actual internal doctor. He is also not that familiar with POTS. So I am going to be seeing my cardiologist for my POTS and my internal doctor for everything else. I have more trust in my cardiologist because he has been practicing medicine a lot longer and he has a greater understanding of POTS. So now I am taking one pill of Fludrocortisone every morning and half a pill of Midodrine as needed every three to four hours. I can take up to four Midodrine a day if needed. So far I have only needed to take two a day. I have been feeling pretty great. The Fludrocortisone (steroid) is to prevent symptoms from happening by having my body retain salt. The Midodrine is to help control my symptoms when I get them, it constricts my blood vessels and raises my blood pressure. My cardiologist still seems a little worried about if I have an undetected arrhythmia, He doesn't say actually that he is concerned but he brings it up every appointment. He keeps bringing up how I may need to have the smallest heart monitor inserted in my chest, right above my heart. I am tempted to just get it and wear it for a few years, just in case I do have one. So I guess I will have to wait and see what happens. If I keep taking care of my self, taking my meds, and if that works then maybe I won't need to have it done. I thought I would update everyone on what is going on and show people that, yes, sometimes a doctor can be empathetic.

"Mourning the Loss of a Life Once Had"

It has been a rough couple of weeks, today especially. I found this one on my Facebook Support Group: http://www.painnewsnetwork.org/stories/2015/10/20/mourning-the-loss-of-a-life-once-had

Spoon Theory

It has been an off week and a half for me. Last Tuesday, my POTS decided to kick me in the ass, I was in bed by 4 p.m. and stayed there for the rest of the night. So while I was in bed, I was thinking to myself what did I do wrong today? I drank enough water, I ate my meals, I didn't over exercise... I thought that maybe I just did too much the day before that I had used some of Tuesday's spoons for Monday. Then, I realized that I had never actually read the original spoon theory story, I only knew what it was because of other blogs and vlogs. So I decided to look it up and found it helpful. I hope you find it helpful as well. It doesn't apply to everyone with a chronic illness but it applies to some. Also, if it doesn't apply to you or you don't have a chronic illness it is helpful to understand those with these types of chronic illnesses. So here it is: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

October is Dysautonomia Awareness Month

This month is Dysautonomia Awareness month, POTS is a form of Dysautonomia. To explain this photo- I had to wear a holter/heart rate monitor for the entire month of February this year to give my cardiologist as much data as I could about my symptoms. This way they could pinpoint a diagnosis. Unfortunately, it didn't help as much as they thought it would but it ruled a few things out in the diagnosis process. I took this photo to show my close friends and family what it looked like and also the discomfort of wearing it. So I thought this would be the perfect photo to spread awareness, it gets your attention. Women are 5 times more likely to develop a Dysautonomia Disorder. There is no cure for Dysautonomia. Most importantly it is not rare, it is just unknown. Please share and help spread Dysautonomia awareness.