“I feel like the chemistry is off in my body and I need to set things on the right track before I will have the strength to do the rest of the work that needs to be done. I feel very listened to here, I have a lot of hope and it feels like there are new directions to take this!”
Erica, age 23, was suffering for years and had significant symptoms limiting her daily life. She spoke with us about her journey, here are her thoughts.
INTERVIEWER: Erica, you have been through so much. Would you or your mom like to share anything about your journey before you came to POTS Care?
ERICA: I have had health problems for a ridiculously long time, since like 6th grade and I have been searching for answers for 12 years and I have learned that I am probably not going to run into a miracle that instantly makes me feel like I have no health problems. When I went to a lot of doctors, they often said that they do not know what to do and they kind of just hand the case off. They think it is psychological and want to send me to a shrink and it does not feel that way and I know that there is a lot that I have to do on my own, but I feel like the chemistry is off in my body and I need to set things on the right track before I will have the strength to do the rest of the work that needs to be done. I feel very listened to here, I have a lot of hope and it feels like there are new directions to take this, that a lot of doctors have not considered before. It is not like Dr. Driscoll has one game plan and if it does not work that is the end, she is going to look at the whole picture. If there are things in my case that need my doctor’s attention, Dr. Driscoll will point me in the direction to go to take care of those pieces too, but I feel really validated and taken care of here at POTS Care.
INTERVIEWER: How did the visit at POTS Care differ from other doctors you’ve seen?
ERICA: With Dr. Driscoll, this is really personal to her, she had POTS and so did her son and I feel like she understands what I am going through in a way that I have never had a doctor understand me before! It is a nice relaxed atmosphere here — you are not in a hospital where you know you can only smell the sterile environment and you see other people who are you know coughing and making you afraid that you are going to catch something from them. Dr. Driscoll builds a ton of time into the schedule and into each appointment so that she can really explain things fully and you can feel comfortable enough to share all of your symptoms. She has enough time that she can handle unexpected surprises and the staff can handle more severe cases or issues that might come along.
ERICA’S MOM: The way that she shows you the science like the MRI — we had this MRI done many years ago at Mayo Clinic and you think you’d get really top-notch service there, but she looks at the same MRI and says she knows what she is looking for and what got missed. In the medical system by the time doctors get into practice they look for a diagnosis and then they treat it for that diagnosis and they are just very eager to find a label that is specific to one area and they stop trying to come up with ways to battle something that they do not quite understand.
ERICA: Okay, one nice thing is that they understand what POTS patients are like here! I usually carry a blanket and a pillow wherever I go and here they were able to supply all of them so that extra suitcase was not necessary, it is comfortable and the staff is really nice. They give me so much hope, but it feels like realistic hope, they are not telling me, “I have the secret and I will make you feel like you have been reborn!” They know they are going to tackle this from a medical standpoint, it is not some sort of faith healing that you know that leads you down a trail of feeling kind of helpless.
ERICA’S MOM: You actually did go to a POTS specialist and like one of the ones that you know that people all recommend and it was not helpful. I mean it might be for some people but he really did not have much to offer you because the one drug that he said would get to the root of everything you couldn’t tolerate.
ERICA: Yeah, I am really excited that she follows up for a long time so that you know you can do trials of x, y and z and I feel like if one medication does not work that she has got a second way to work around in mind.
ERICA’S MOM: What was also really nice — Erica has a diagnosis of mito and EDS and POTS and it was really comforting to hear that all of Erica’s symptoms do not seem to be attributed all to mito which is I guess what most doctors think like, oh yeah it is all mito so just treat each symptom! This is more of a whole system approach.
ERICA: Once you have the mito or EDS diagnosis, doctors are very quick to work any symptom you have into that diagnosis and not look for like if you have a bunch of hangnails, they will say that is probably because of your EDS or mito! It just ends up being stop here, you have a genetic issue that we cannot fix, so we are going to stop trying to look for other things! She does not stop trying to look and you know she is going to dig for other things that might be missing.
INTERVIEWER: Thank you so much for sharing your thoughts with us today, Erica!