So you've been vindicated, validated and just plain informed! So now what? This is when you get on with life but armed with information. You don't stop searching but you can now do so with a place to start. People are often misdiagnosed in this roller coaster of chronic illness. I was as well but by constantly learning I found that I can try to make things a bit better since the path is a little less cluttered. I remember after my diagnosis, my Cardiologist told me to avoid message boards and forums because of the misinformation and crazy people out there. Yes, he said crazy people. I will have to admit that I am cautious because people can say anything on the internet. However, it didn't stop me because asking questions brought me answers and those answers brought me to a diagnosis. I made sure to tell him that too. I also told him that those forums led me to my Neurologist that performed the Autonomic Testing. My Cardiologist admitted that he could not find doctors who performed Autonomic Testing. Maybe he should read forums. I'm just saying...
Right after I was diagnosed in 2016 I found a new website called Patients Like Me. I think I found it on a tumblr post that I used to read for Spoonies. However, sometime last year they blocked non members or anons possibly due to all of the strange comments the tumblr received. I stopped following because I don't have an account and didn't want to get one. With brain fog, log-ons and passwords are effective ways to keep me out of things because I hate having to remember them. I stuck really close to websites, blogs, tumblrs(with anon access) etc. that talked about Dysautonomia as a whole and specifically Neurocardiogenic Syncope. I dove in because I needed to know as much as I could and I found myself educating my doctors on the topic. No, I don't think they are dumb. I found that if they don't spend time on this type of thing it is easy to miss. Even now when Residents or students are in the room my advice is always listen to your patient and keep learning. I know that isn't always the case when I talked to most of my doctors.
Back to Patients Like Me. I really like this site because it encompassed people with all types of ailments and it was doing more than just providing a place for people to gripe. It is a place where people can track their issues from the beginning, if they can remember, track meds and their effectiveness, hospitalizations, weight etc. The site also puts it in a chart that you can download and take to your doctor to see changes since your last visit. This is great for people like me who hate documenting things but needs to. PLM also links you up with other people with your specific condition and/or taking the medications that you take. People comment on if a particular course of meds worked for them or not. You can follow others like you and see their posts of their daily experiences or just updates on how they feel. People comment back and leave messages, give support and encouragement. There are also forums where you can share updates with your conditions and new treatments and struggles real time. I also like the connections to clinical studies in your area, if you feel so inclined.
This wonderful because this knowledge is not just trapped on this site. The purpose is basically to gather information to change how people are diagnosed and treated. They gather real information and experiences in hopes to actually get answers and hopefully cures. Right now they have more than 600,000 members living with over 2,800 conditions. I currently have 12 listed and it breaks it down to small things that I would never consider sharing like my anaphylaxis from peanuts and shellfish which are life long conditions.
I really was hooked as to the reason PLM was started. There were three brothers and one brother was suffering with ALS. Most people know it as Lou Gehrig's disease and our younger population know that people did the Ice Bucket challenge for this disease. No matter how you know about it, you do know that is fatal. The brothers wanted to get answers and wanted to do more than talk about it. They wanted to do something about it. I embraced that I got aboard. Neurocardiogenic Syncope is POTS lessor known and researched little sister and it needs attention. Even if one person reads this post then it will mean one more person who cares. I don't share everyday on PLM because I just don't always have the mental space. However, when I do, someone always provides feedback or encouragement.
There is life after diagnosis. There are ways to navigate things, even if they will be difficult. I support this because hopefully, someone will live a better life because we shared and someone listened.
*Not a sponsored post. I just asked them if I could share a few things because knowing you are not alone in you battle is necessary. Find out more at patientslikeme.com.
One day at a time.