I reached a milestone in November. Half my life ago, I was diagnosed with granulomatosis with polyangiitis (GPA). On Nov. 16, 2001, I was near death when I was admitted to the emergency room. Nineteen years later, here I am. Each of those years has been a bonus in my life.
You can read all about the beginning of my journey here. I was discharged from the hospital the day before Thanksgiving in 2001. So, each Thanksgiving, I think about that dreadful time. I also think about the fact that each Thanksgiving marks another year of victory against GPA.
Over the years, I’ve gotten used to my normal symptoms and the restrictions that come with GPA. I have joint pain, especially in my knees. Cuts and bruises take forever to heal. Fatigue pops up randomly. A pile of worry comes with every cold or other illness. I get random stabs of pain all over my body. I take methotrexate, so I don’t drink and am careful in the sun. Weight loss is a struggle. Doing anything that requires physical exertion is challenging.
I am so used to these things that I forget it’s not normal. When I think about what is normal, I become jealous of others my age who are healthy. I wonder what it’s like to not feel 20 years older than I am. Then I get mad at myself because I remember that my life now is all extra time, and avoiding parties and other things doesn’t mean I haven’t had nearly two great, albeit challenging, decades.
I think the most difficult part of dealing with GPA involves doctors and insurance. I’ve changed jobs several times, which has meant moving to different locations and switching medical practices and insurance providers.
I hate finding a new doctor, because I always wonder if they will be familiar with my condition. Will they listen to me? I never know what to expect, because each doctor and medical office is different. At some places, I see the physician’s assistant, not the doctor. Sometimes practices do in-office lab work, and sometimes they don’t. Some doctors want to see me every six months, and some every six weeks. Some require referrals, some don’t.
As for insurance, that’s even more stressful. For example, I currently have no insurance. I just started a new job, and the healthcare plan doesn’t kick in until January. Thankfully, I have been able to afford my medicine and lab work. I was stressed over the costs, but I got a steeply discounted price for my methotrexate through GoodRx, and the nice nurses at the lab found me a discount.
I have to be really careful because I can’t afford to end up in the hospital right now. I have been sheltering at home since March due to the pandemic, so hopefully, COVID-19 will stay far away from me. My job is remote, so I’ve only left the house to get lab work done.
This is not the first time I’ve gone without insurance for a bit. I’ve dealt with it every time I’ve changed jobs. It’s always nerve-racking. I wonder, will I get sick? Will I have a flare? Can I afford the medicine that keeps me alive?
It’s strange to think about everything I’ve gone through in the last 19 years. While writing this column and thinking back, it occurred to me: I am happy.
I love my new job, and it pays a lot more than my last one. It’s remote, so I don’t have to worry about going out during the pandemic. I live with my mom, and we get along perfectly. Plus, I get to eat home-cooked meals all the time!
After many years of ups and downs, I am finally in a place in which I smile every day. I laugh every day. After my diagnosis, I didn’t think this could happen. I thought GPA would crush my body and spirit. And at times, it did.
Now, for the first time in my adult life, I am content. It feels good.
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.