“It is all about finding hope and healing, and you take my whole self not just one body system or one symptom and try to fix that. I am treated as a whole being, and I love it. My favorite part is exactly why I came to POTS Care. I believed you could help me heal! I believed in YOU! Thank you Dr. Diana!”
Lafonda came to POTS Care after struggling with her illness for 4 years. Her diagnoses included chronic pain, chronic fatigue, fibromyalgia, arthritis, IBS, autonomic dysfunction, hypertension, and sleep apnea. Lafonda also suffered from migraines. She had seen numerous specialists and was shuffled around from doctor to doctor, but continued to suffer with no answers. After a thorough evaluation, we were able to locate the underlying cause of Lafonda’s suffering. She leaves POTS Care with a plan in place for healing and validation.
INTERVIEWER: Thank you for taking the time to speak with us today over the questions. Can you share with us a little bit about your illness, what it has been like and how it has affected your life?
PATIENT: I cannot really tell you when my illness started. I look back and the longer I look the longer it has been, but the most severe has been in the last probably four years, but even before that I would have ups and downs a lot and would try lots of different things myself. The thing probably for me was the severe fatigue and trouble thinking clearly, concentrating, and then the pain, oh my goodness, there are just not words good enough to describe the amount of physical and inner turmoil and emotional terror that comes with being so incapacitated to function where every fiber of your being is on fire and freezing cold at the same time, and your mind is like moving in sludge. You know small glimpses of relief will come through and it is like ah I am so glad that has passed, but even after the fatigue that follows for so long was inescapable. I tried everything that I could possibly imagine. You know, being a mom, it is hard, being a wife, it is hard, being a student, it is hard, being a nurse, it is hard, and just being yourself becomes impossible. I felt like I really lost me in this journey and I missed me and I could not remember what it was that I liked about myself or you know I could not do anything, I wanted to go, have fun and I am a fun person. I used to be really fun and I was just at the point where I was just this slug that sat around and screamed inside, you know every cell is screaming at me literally and I just could feel this storm inside that I could not figure out how to calm down. So it affected every aspect of my life. It got worse with every pregnancy that I had. I did not know how to be a friend anymore. I did not know how to make friends. I was always outside looking in and trying to hide things so hard that I lost myself. It just felt like an uphill climb and I have been to so many doctors, it is ridiculous. The reason I skipped Mayo clinic and chose to go to POTS Care, was that I’d already gotten and read through everything Mayo had to offer for POTS. I was not satisfied that they really knew a whole lot about how to treat it, and what the actual causes of POTS were. They do know a LOT about the symptoms, and included several likely contributing factors that are not evidence-based; they also easily dismissed many theories, but did at least mention a few. They seemed to act blindly like the rest of the apothecary medical world to: treat the symptom, not the problem (who wants to put the effort into finding the problem?). Most of my information in the management of POTS came from the Mayo Clinic. A few of my medical providers (loosely put) laughed at my research efforts and dismissed my experience, knowledge, mental and physical efforts, and personal theories. The cardiologist literally laughed in my face while he said he really didn’t know that much about POTS, took my pulse, and said I didn’t have it (REALLY?). So, I followed as best as I could– the management of POTS per the Mayo Clinic’s report. I did actually find the study helpful, but still felt that things were missing. That’s why I so appreciate POTS Care and all you do! Dr. Diana Driscoll, you look for the contributing factors, and underlying issues, not just the symptoms!
INTERVIEWER: Do you feel that the care you have received at POTS Care was different than previous care?
PATIENT: Absolutely, different in that it is very personalized. They are very sincere, very caring, very conforming to my needs instead of me trying to conform to yours, and just the out flowing of love that you feel from every single person in this building, people who I have not met, you know. I just love how you can feel that the real kind of love and charity, that sincere caring, that every single person in this building has and you can just see that and feel that, and it is just awesome. I was kind of concerned because you did not accept medical insurance. That had concerned me, but when you are here nothing is about the money, it is all about me. It is all about finding hope and healing and you take my whole self not just one body system or one symptom and try to fix that. I am treated as a whole being, and I love it. My favorite part is exactly why I came to POTS Care. I believed you could help me heal! I believed in YOU! Thank you Dr. Diana!
INTERVIEWER: Were we able to identify any underlying problems contributing to your illness that others have missed?
PATIENT: Yes, by far! I am looking forward to when labs come back and we can have the final plan. Those that I worked with were so stuck on their ways that they could not see the underlying problems, they would not acknowledge or if they did see it, they did not really address it because they did not understand. Having it in writing, with labs to back it up will be great.
INTERVIEWER: Do you feel like we are using real science here at POTS Care?
PATIENT: Yes, it is real science. I love science. Everything is scientifically based, every single thing. Because I like to know the details of how things work and you come here and they are pasted on the walls. You go through all of their information and everything is cited. I mean, it is already there in the medical world, but it is not mainstream. Everything is proven down to our very DNA. The way things break down and every drug that is used has evidence behind it. Everything is scientifically based.
INTERVIEWER: Do you feel like you have a better grasp on how to heal from you condition now?
PATIENT: I feel like my grasp has been validated actually. I feel like I have a very loose grip on some other stuff, especially the dietary and nutritional stuff because I have tried so much myself, trial and error, and to come here and see that almost everything I have done falls within the guidelines and I think that is how I have still been able to maintain my level of functioning.
INTERVIEWER: What would you like to say to the folks that are considering coming to POTS Care?
PATIENT: Do not hold anything back, find a way, it is worth it. Never ever give up hope.
INTERVIEWER: Thank you for answering our questions, Lafonda.