One thing about having a chronic condition is you get used to going to the doctor all the time. I have an entire team of doctors dedicated to all my issues. When I sat down to think about it I came up with a whole lot of them.
The problem with having this many specialists ends up being coordinating the care between them. Even if you have them “in network” and there is a shared database of your medical records there still ends up being a lot that is probably overlooked. It is really a flaw in the system especially if you are sick and trying to keep track of stuff is already complicated in your overworked, overtired brain. There really needs to be a position of patient advocate that can tie all of these people together. The other issue seems to be when you have so many people tending to your care it makes it really easy for them to pass the buck onto the other specialist and things fall through the cracks.
Here are a list of my team members:
- Primary Care Physician – This one is probably the one that I see the least. She deals with physicals and random other issues that pop up.
- Rheumatologist – This is the doctor that I deal most of the time. He is the main gatekeeper of all the lupus stuff. The role of the rheumatologist is to diagnose (detect), treat and medically manage patients with arthritis and other rheumatic diseases. These health problems affect the joints, muscles, bones and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain).
- Neurologist – I deal with this one for all of the transverse myelitis issues and also the brain seizures, etc… He likes to make me do spinal taps and MRIs. The neurologist treats disorders that affect the brain, spinal cord, and nerves.
- Urologist – I see her on a semi-regular basis to deal with my neurogenic bladder. We talk about catheters and she does my bladder botox injections.
- Gastroenterologist – I get to see him on a monthly basis to deal with my neurogenic bowel issues. He sticks his finger up my butt and medicates me. Yay!
- Psychiatrist – I see her on a weekly basis and cry which is extremely helpful. The plus over a psychologist is that she can also prescribe meds for depression / anxiety / etc.
- Physical therapist / personal trainer – I get to see him to try to make my legs move.
- Opthamologist – This one I don’t have to see very often, but I do have to have special tests to make sure that the lupus medications aren’t damaging my eyes and to monitor changes in my vision that may or may not be caused by brain inflammation.
On top of seeing all of these doctors in what seems like a near continuous cycle for check-ins and medication adjustments, I also have to do regular bloodwork, urinalysis, MRIs and (previously mentioned) botox injections. Sometimes it seems like a fulltime job to keep up on keeping up.
What about y’all? How many specialists do you have? Am I missing something?