There isn’t one standard path to receiving a psoriatic arthritis diagnosis. Perhaps the diagnosis came from your dermatologist who’s been treating your psoriasis for years. Our maybe it came from a rheumatologist referral after having significant joint pain.
Whichever the path, moving forward can be difficult. Whom do you draw on to help you coordinate your care? Who’s your primary resource when it comes to disease management? Many questions are likely circulating in your brain.
Starting in elementary school, I always had a consistent orthopedic surgeon. It seemed like every year I had some sort of knee pain. Braces, crutches, physical therapy — they were just a part of my routine growing up. At a certain point, I was referred to a rheumatologist because my orthopedic doctor wasn’t sure what to do with me. Two different rheumatologists and a few tests later, it was suspected that I had psoriatic arthritis. I was never given an official diagnosis, and because I was going through puberty, the doctors didn’t want to treat me with medication.
As my school years went on, I saw specialists for migraines, stomach problems, sinus issues, vocal nodes — you name the specialty, I probably saw someone in the field.
Once I was officially diagnosed in 2012 with psoriatic arthritis, the madness began. Doctor on doctor, appointment after appointment. It started getting overwhelming. I’d surface a new symptom and be referred to a new doctor.
Who was supposed to help me coordinate all of my care? After all, at the end of the day, all of my symptoms came back to the underlying issue — psoriatic arthritis.
During this crazy period, I read the book Mind Over Medicine by Lissa Rankin, M.D. This book truly changed my life, as it made me realize I needed to be the driver of my health. In the book, Dr. Rankin talks about curating your team of health care professionals by getting doctors and other practitioners on your side, to work in tandem to coordinate your care.
I started looking at the different aspects of my condition and knew I’d need several practitioners to help me. Of course I had my rheumatologist and dermatologist, but there were other issues to be addressed as well. I wanted to take a holistic approach to my healing — meaning I wanted to look at my body as a whole and promote healing from within.
As I became empowered, I began unknowingly interviewing my doctors. I would take articles from other patients and gauge their reactions, spewing facts and information I unearthed from my own research.
Was the doctor willing to work with me? Did they dismiss me right off the bat, or did they have an open mind? Were they willing to support me through dietary changes and other lifestyle changes, or did they see them as unnecessary and silly?
Running through the list of my doctors, I kept around the ones who truly saw me as a partner in my health. And the others? Well, they got the boot!What type of doctors were I seeing at the time? Get ready for this mega list…
- Pain management
- Blood disorder doctor
- Functional medicine
- Physical therapist
- Occupational therapist
- Health coach
Cycling through all of these health care professionals, and their nurses and physician’s assistants, was hard work! Not to mention overwhelming. I barely had the energy to make it to my appointments, let alone to coordinate my care between all of these doctors. I found it extremely important to take good notes and make sure to update my doctors on what the others were telling me to do.
For a period of time, I did go to all of these individuals for help. But as I learned how to manage my symptoms, I discontinued appointments. My health coach helped me see the importance of eating right, my psychiatrist and psychologist helped me implement routines that aided me in balancing my nervous system, and my pain-management doctor offered relief until I got my pain under control.
There’s no weakness in asking for help. By pulling together the top thought leaders in certain fields, you can curate a team that will help get you back on your feet!
Nowadays, I don’t go to all of these professionals consistently. My rheumatologist, dermatologist, acupuncturist, chiropractor, and occupational therapist are my main go-tos. But, having worked with them all now, I know I have the rest in my back pocket for when situations arise. I really do feel like I’ve fielded my own health care dream team.
Want to build your own health care dream team? Here are four tips to get you going yourself!
1. Select a health care practitioner who believes you can heal. Having a health care provider who believes in the power of getting you better is invaluable. Mental health has huge ramifications on healing, so pick someone on your team who lifts you up! Make it someone who not only believes in you, but also believes that together you can get back to living the life you love.
2. Ensure that your practitioner realizes that it’s a partnership, not a dictatorship. The healing relationship between you and your practitioner is a joint effort, and you must pick team members who realize the importance of this fact. Egos aside, your physician must be willing to listen to you and modify treatments accordingly. You must be co-pilots on this healing journey.
3. Make sure the health care practitioner is a team player and looks at your health in a holistic view. If there’s a leak in a dam, there will be ramifications downstream. The same goes with your body. If one thing is off, you can be certain that it is impacting something else. To not address your whole body (and really your whole life) is a serious error. In order for our bodies to move toward healing, we must take a holistic view. That means that your health care practitioner must be willing to work with the other players on your team — or, at the very least, be open to working with their courses of treatments and be willing to modify other treatments when necessary.
4. Commit to being the gatekeeper between all of your dream team members. To think that your teammates will be communicating all the time isn’t realistic. With the rising pressures of health care, and with disjointed electronic health record systems, you must make sure to accurately communicate what is going on between all of your teammates.For me, I keep my own health record. At each appointment I write down notes, get copies of labs and tests, and keep a running list of my current treatments/medications. Then, when I go in to see my practitioner(s), I make sure to update them on how I’m managing, what I’m currently doing, and what my other doctors have said. A great tip is to bring a friend or family member with you. They can help you take notes and recap what happened during appointments. When I’m not feeling well, I ask my mom or dad to come with me to my appointments. Sometimes someone else picks up on something you may not have heard!A commitment to being your health’s gatekeeper is a commitment to ensuring the highest level of care you can receive. Ensuring there is fluid communication between all of your teammates will only work to your advantage and get your psoriatic arthritis under control!
Julie Cerrone Croner is a Psoriasis HealthCentral Social Ambassador, certified holistic health coach, patient empowerer, yoga instructor, autoimmune warrior, and the blogger behind It’s Just A Bad Day, NOT A Bad Life. When she’s not empowering chronically fabulous patients to live their best lives, she can be found traveling, cooking, geeking out over health-related things, or enjoying life in Pittsburgh. Julie loves social media, so make sure to connect with her on Twitter, Instagram, or Facebook.