Let me just start by saying, if you have an illness that is rare, or isn’t really understood by your medical team, GO SEE A SPECIALIST! You may have to fight to do it, or look hard to find them, but it’s so worth it. Now, obviously I’m not cured, she wasn’t able to give me the miracle drug, but what she was able to give me was a sense of normalcy, which I haven’t had since May. Dr. Gracin bounced into the exam room with a huge smile and cheery hello. My mom and I looked at each other as if to say, “finally, someone who doesn’t come in terrified of what I’m bringing to the table.” She was very matter-of-fact with me. I have POTS Syndrome. There’s no dispute about that. I have Lyme. I have a complicated case, but it’s nothing she hasn’t seen before, and it’s nothing that intimidated her, in the least. After a slew of questions and an examination, she offered her treatment plan. We’re going to try a new med that will raise my blood pressure in hopes that it will combat the dizziness. We’re going to try it for a month, monitor my daily progress closely and I’ll be back to see her in a month. BAM! This is a plan I can get behind. It made sense, there was a clear expected outcome and there was a follow up. This is the FIRST appointment with a traditional doctor that didn’t end with, “POTS can least for years, come back and see me if it’s not better in 6 months”. She also was on board with the fact that I’m working with a naturopath, and even contacted her office to gather some information. She wants to help me better manage my symptoms so I can increase my quality of life. What a gift!
The other insight she provided me was that when you’re dealing with a rare illness, you really don’t want to be “patient zero”. You don’t want to be the ONLY person on a doctors case load with POTS. You NEED to see someone who woks with this every. single. day. You want to work with someone who has seen things WORK. You don’t want to be the guinea pig on the trail drug. When you feel this sick, you need to advocate the best care for yourself. (this is NOT to say that my doctors here have not been amazing, caring and thoughtful…they have been! the fact of the matter is just that living in rural Maine limits that amount of cases they’ve seen or worked with)
Am I still sick? Yes. Could I be sick long term? Yes. Is it still a struggle day-to-day? Yes. So, what’s changed? I am in the best hands available. I am in the care of people who do this everyday. My symptoms don’t scare them, my story is not unique, and that is the BEST feeling in the world.