Care Team: Overview & Main Docs
As a patient dealing with IBM, I've learned that finding the right doctors and specialists, establishing a strong support network, and exploring various treatment options are essential components of managing my health effectively. In this series, I’ll talk about my experiences finding the right clinicians to help me address my disease and exploring alternative modalities to complement the work of my Western/allopathic doctors.
The foundation of any successful healthcare journey begins with finding the right medical professionals who will be your partners in managing your health. It was crucial for me to do thorough research, seek referrals from trusted sources, and consider factors such as specialization, experience, and location. At the same time, we need to be realistic and admit that sometimes, we just can’t get in to see the person we thought would be the best fit. Our system today, with insurance companies and mega healthcare-delivery ‘systems’ with specific doctors, really limits how much control we have over who we see, but we need to do what we can to get what we need.
There are some tools to help folks with myositis find physicians in their area, such as THIS ONE offered by the Myositis Association.
Beyond doctors, a healthcare dream team can include family, friends, and support groups. These individuals can provide emotional support, offer valuable insights, and help you stay accountable for your health goals.
I was quick to set up my network, as I knew I could not have gone through this alone.
I ended up with a neurologist (rather than a rheumatologist) mainly because that is who finally gave me my diagnosis. Where I live, there is a neuromuscular clinic for folks with myositis, ALS, and other neuromuscular issues, so I signed on to be part of that clinic. I went to my first visit and was assigned a room. Over three hours, different providers came in and talked with me: a dietician, a physical therapist, an occupational therapist, and one of the top IBM doctors in the state. It was great being able to meet with another physician whose approach is slightly different than my own physician’s to get a broader view of possibilities. When I’m next to go to the clinic later this month, I’ll see a third IBM doctor, another well-respected professional, and I look forward to hearing what she has to say.
I definitely suggest seeking out this sort of clinic experience for anyone with IBM or another disease like it.
Once I had established my healthcare team, it was time to look at the realm of treatments and management strategies. I engaged in open discussions with my doctors about potential treatment options. Currently, there are none, but I ask anyway. Medicine is always changing and I want to be at the beginning of whatever treatment might work. I am always considering both conventional and innovative approaches. If they become available, I will be sure to understand the benefits, risks, and potential side effects of medications and ask about alternative therapies.
I am always interested in exploring holistic options. While discussing these therapies with my healthcare providers, I had to remember to keep an open dialogue and collaborate to ensure they aligned with my overall treatment plan. I want to try everything there is. I listen to healing music. I am pursuing acupuncture and investigating compression therapy and cryotherapy. I am researching hyperbaric chambers. Maybe none of them will help, but being the eternal optimist that I am, I need to know for sure.
Knowledge is a powerful tool in navigating the medical landscape. I have taken the initiative to educate myself about my condition, treatment options, and potential outcomes. Reliable sources, such as medical journals, reputable websites, and patient advocacy organizations, have provided valuable insights, helping me make informed decisions about my health.
I find that navigating the medical landscape is not a sprint; it's a marathon. I need to practice patience and self-care throughout my journey. I understand that setbacks may occur, but maintaining a positive mindset and engaging in activities that promote my well-being can help me endure the challenges.
So as I embarked on this healthcare journey as a patient, I needed to remember that it requires a strategic approach that encompasses finding the right doctors, building a strong support network, exploring treatments and therapies, and staying informed. By actively engaging with my healthcare providers, considering a range of treatment options, and nurturing my physical and emotional well-being, I am better equipped to navigate the medical maze and achieve a better quality of life.
In future installments of this series, I’ll talk about mental health support, chiropractors, functional medicine, acupuncture and Traditional Chinese Medicine, and more. Hope to see you there.
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
