Oh, the doctors I see as part of my ANCA vasculitis treatment

We all know the children’s book by Dr. Seuss called “Oh, the Places You’ll Go!” After 17 years with ANCA vasculitis, I could write one titled “Oh, the Doctors You’ll See!”

Before my journey with ANCA vasculitis, I had two doctors — my primary care physician (PCP) and my gynecologist/obstetrician. I saw them once a year to refill my high blood pressure and migraine medications. Scheduling appointments was difficult, as I raised and home-schooled my three children. But when eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis, entered my life, I learned how carefree my previous medical journey had been.

In 2006, I had an allergic reaction during a construction project that left me covered in hives. I took an over-the-counter allergy medicine and the hives disappeared, but a cough started up that became never-ending and exhausting.

At the beginning of my illness, I was treated by an asthma and allergy doctor, who diagnosed me with EGPA after my heart rate became very high and I began to lose a lot of weight despite being on 60 mg of prednisone. I’d also begun to have strange pins and needles in my hands and feet and a new kind of rash called purpura appeared on my body. My asthma had become uncontrollable.

Here’s Dr. Seuss to help explain what I was feeling:

“You can get so confused / that you’ll start in to race / down long wiggled roads at a break-necking pace / and grind on for miles across weirdish wild space.”

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EGPA affects multiple systems in my body. My doctors decide how to stop its progression and help me live a longer and healthier life.

Now I have a rheumatologist who oversees my care. This specialist collects reports from different doctors to decide how best to control my overactive immune system.

I see a cardiologist for my increased heart rate and he runs yearly tests, including electrocardiograms and echocardiograms, to make sure my ANCA vasculitis isn’t affecting or endangering my heart. My neurologist gave me a name for the pins and needles — peripheral neuropathy, a common symptom in EGPA. Meanwhile, my pulmonologist works closely with my asthma doctor to monitor the damage in my lungs and act quickly to address any issues in my breathing.

Shortly after my diagnosis, I had severe ringing in my ears and vision problems. I now visit an audiologist for my hearing and an ophthalmologist for my eyes. My constant raspy voice earned me a visit to the otolaryngologist, who diagnosed me with ruptured vocal cords.

Having so many different medical doctors sure brought me into unknown territory. I never realized there were so many medical specialists and that I would see so many of them. Since my diagnosis, I’ve also added an endocrinologist, immunologist, hematologist, psychologist, and home healthcare nurse to my list of healthcare partners. Plus, I still see my PCP because I know how easy it is to ignore other diseases if I focus solely on ANCA vasculitis.

It’d be easy to let all my medical appointments take over my life. Balancing my medical needs with all the other parts of my life is essential. I won’t let illness become the center of my life. It’s important to continue doing the things I love. Crafting, cooking, traveling, and writing make me happy and help me live more joyfully.

Having a life-threatening chronic illness has taught me not to wait until tomorrow to get things done. The message in Dr. Seuss’ story is that life is full of ups and downs, but it’s essential to keep moving forward and to never give up on our dreams. I encourage anyone living with a chronic illness to live their dreams today rather than waiting for tomorrow.

“You’re off to Great Places! / Today is your day! / Your mountain is waiting. / So … get on your way!”

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.