(this is Part II of an interview conducted with Erica S., who writes the blog slightlydistresseddamsel.com, chronicling her experience living with chronic pain. Part I of the interview is found here.)
Q: Ok: doctors! Youve certainly seen a lot of them. What qualities make a good doctor for you?
E: Oh man, you aren’t kidding! It’s almost laughable the amount of doctors I have seen since 2013. I’ve gotten good at picking them out and doing my research. I have always gotten along with doctors who think outside the box when they don’t know something and research it. I am upfront with doctors when I first meet them that: I’ve been through it, am well researched, and if I’m there, I’m there for good reasons.
I think it’s important you have a voice and should be heard. I prefer to see it as a collaboration. If doctors can be kind, patient and creative thinkers, I appreciate it. A sense of humor also makes it easier. Many have become friends!
Q: Can you talk about medication? Youve tried a lot. Have you currently found a combination that works best for you?
E: Ah, the medicine question! I have been through the ringer with meds. I currently have several “levels” of pain medication combinations I take depending on the severity of pain. I adjust my medications and types of medications based on what Im feeling. I started keeping lists of medications I’ve tried categorically and started finding patterns with those that are problematic. I then had a pharmacogenetic test where they swabbed my cheek and analyzed how I metabolize certain medications. What I found blew my mind– I was an intermediate/slow metabolizer for several phenotypes. Nearly all pain killers/opiates are metabolized similarly. When you are a slow metabolizer some, as I understand it, don’t metabolize at all. For me, taking any opiate for a period of time could lead to stroke, which is why I was getting intense reactions like hives, dizziness, vomiting, etc. Now I pre-medicate when I know I’m going to have a rough day, work out, keep a list of all the meds I can’t take and all the drugs I do take in case I need to go to the ER, etc.
I would love to not take medication, but the reality is they keep me stable, (relatively) healthy and able to manage my pain, for the most part.
Q: So, better city: London or New York?
E: Tricky! New York will always be home to me. For all of my medical issues, however, New York became way too stimulative. London, while its food is not my cup of tea (no pun intended!), is quiet, clean, friendly and disability-friendly. London has been a nice place to transition from medical leave to semi-real life again.
Q: I read on one of your posts that youre currently doing a masters course. Are you enrolled in a masters program?
E: Yes! I am doing an MA in Fashion Design Management at London College of Fashion. I have disability there and the list of accommodations I receive is incredible. I love the work I am doing now and being back in an environment thats not a doctor’s office, or my bedroom at my parents’ house, has been great for me.
Q: Im interested how we as humans deal with pain. Do you find your relationship with pain has changed? Any tips you can give people on how best to deal with pain other than medication?
E: I met a woman who was a Goldendoodle breeder who had nearly the same diagnosis as me, but much worse off physically. I jokingly call her my “pain guru. For a while, she was bed-bound, wheelchair-bound, used oxygen tanks, had horrible mast cell attacks: everything. Yet she is married, has her own successful business and, while she cant do everything, has found a way to make her life work. She would convey to me that my life cannot be centered around my conditions–it needs to be centered around the life I want.
My coping mechanisms include distractions (like Netflix), good food (brownies), heating pads, a large supply of pillows, etc. I do physical therapy, boxing (which is generally not advised, but I love it and it works), see a chiropractor, get massages, have monthly injections, Reiki, etc. Keeping control of my emotions and anxiety is also important because its the difference between freaking out over a mast cell attack or not, or a pain flare. I also love watching stand up comedy. Having a sense of humor about all of this has been a major factor in getting me through very tough and dark days.
Q: Any advice to someone else beginning to go through what youve been dealing with?
E: Keep all of your medical records. Start an Excel sheet with all doctors, medications prescribed, and what happened when you took those medications. I think people get frustrated when things don’t work right away, but you have to be patient. It took me almost 3 years to figure out what worked for me. If you try 20 things at once, you have no idea what helped or hurt you!
We thank Erica S. for speaking with us. She is unique in taking the realities of life, be they seemingly disadvantageous, and is creating a meaningful life.