When Your Medical Team Keeps Growing
Last updated: August 2023
I can barely keep track of my doctors anymore. I know the important ones, of course, like my primary care and rheumatologist. I have an eye doctor and a dentist. That used to complete the list, but at some point, the team started expanding and it seems like it’s never going to stop.
People say that autoimmune diseases don’t like to travel alone, so I suppose they also like to pick up medical professionals along their journey. Recently, I had a staggering number of appointments in a row which led me to make a list of all my doctors. This idea was also inspired by another article I wrote about having "lupus plus" – a phrase I use to describe having numerous health conditions.
My expansive medical team
It was a bit hard to make this list. I had to look through my patient portals, emails, and calendar to make sure I didn’t miss anyone. So far, I’ve come up with 20 medical professionals, and any new problem can easily add another one. I’m starting to dread the word "referral."
Here’s a list of my medical professionals with a brief explanation of why I see each one:
My primary care provider treats my hypertension and acid reflux and helps me to figure out new health issues as they arise (often with referrals). She acts as a central person in my medical team, though it's hard for her to keep track of everything. I typically see her every 3-4 months.
This is an interventional pain specialist that treats inflammatory, likely autoimmune related, pain in my spine. I see him as needed for treatments and follow-ups.
This provider is also called a physical medicine doctor. They help me with my impaired muscle function and other types of injuries from joint and tissue problems. She also specializes in medical Botox as needed; I see her 3-4 times a year.
Perhaps the 5th one I've worked with since being chronically ill, my physical therapist specializes in pelvic floor therapy (which I needed after my second baby) but is also helping me with neck pain and overall stability issues. I see her weekly when I can.
Eye doctor for vision care
My eye doctor manages my contact lens and glasses prescriptions.
Eye doctor for medical care
This eye doctor manages my chronic dry eye, cornea disease, and annual hydroxychloroquine screening. When I have a flare-up of either eye disease I see him every 1-2 weeks, otherwise just 1-2 times a year.
I see my dentist 3-4 times yearly due to dry mouth exacerbating my overall dental health.
My Sjogren's doctor works in oral medicine and helps track and manage my oral Sjogren's symptoms.
My Ear, Nose, and Throat (ENT) doctor manages various issues including chronic hoarseness, tinnitus, and nasal issues.
Sometimes I only see my OBGYN for an annual exam, but since I have polycystic ovary syndrome (PCOS) I get checked out if I go longer than 2 months without a period to ensure there are no cysts or other problems that need to be addressed.
My neurologist specializes in migraines and I see him about 3 times a year. I may need to add another neurological doctor to my team soon as they tend to be ultra-specialized.
I have IBS and other GI symptoms that flare up from time to time. I see my gastroenterologist twice a year, which means scheduling a colonoscopy sometimes.
My dermatologist prescribes anti-inflammatory creams for my facial rashes and does an extra thorough skin exam every year partially due to precautions from my biologic medication.
My sleep specialist manages my sleep apnea and CPAP machine, and my overall sleep health.
I started seeing this professional after kicking a weight management doctor off of my healthcare team (due to them only wanting to prescribe appetite suppressants and requiring a 1,200-calorie daily diet.) That's a resounding nope from me! The dietitian advises me on meal preparation with chronic pain, sensory issues related to food, and improving overall nutrition.
I see my therapist weekly when possible. She helps me process struggles from chronic pain, anxiety, medical issues, grief, marital stresses, depression, parenting, and other mental health challenges.
This doctor specializes in psychiatric care and prescribes low-dose ketamine for depression. I chose this route because therapy and lifestyle changes haven’t been enough to treat my depression and I can’t take anti-depressants because of my extensive dryness.
I will begin seeing a cardiologist soon. I’ve been putting off a visit for years as it wasn't crucial. That changed when I began having spikes in my resting pulse up to 140 bpm.
For some reason, I’ve traumatized my feet over the past year and ended up with terrible inflammation in my toes. I’m hoping we’ve resolved it and I can take the podiatrist off my list soon.
My medical team keeps growing
You might be thinking, how do you have time to see so many specialists? The truth is, I don’t. I make it work the best I can, between virtual appointments, back-to-back appointments, and sometimes taking my 1-year-old with me. And let’s not forget about all those additional sick visits as a mom of 2 young boys!
Frankly, I don’t like having so many health issues and needing this many professionals to care for me. Who would? I also get frustrated easily when I feel like an appointment was not helpful because it all takes so much of my time, energy, childcare, and money to have these appointments.
Adding to the medical busyness, both of my sons have multiple specialists and my older son has 10-12 hours of therapy weekly. It feels like an enormous job to manage our medical care – so much so that I often drop the ball and struggle to pick it back up again.
How large is your medical team? Do you expect to add more doctors in the future?
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?