Our latest blog is written by Eric Lynn.
He shares his personal journey of living with Granulomatosis with Polyangiitis (GPA).
I have been a paramedic now for 44+ years, and practicing critical care for the last 15 years.
Being able to provide care to the most critical of patients has been one of the most challenging and the most rewarding experiences in my life.
In medicine and in EMS, we see the result of such tragedies; your mind cannot unsee what you have witnessed.
Nothing would prepare me for the journey that was waiting for me with this rare autoimmune disease, Granulomatosis with polyangiitis (Wegener’s).
Months before my diagnosis, I was feeling horrible with muscle and joint pain, extreme fatigue, and what seemed like bad allergies.
Then I had an unusual headache with a severe eye pain that was frightful. I could see my optometrist right away, who told me at that time that this was something systemic and pointed me in the right direction to a rheumatologist.
That was over eight years ago. I have learned that to manage this crazy disease, we must be strong advocates for ourselves. I was astonished at the lack of knowledge about rare diseases.
Knowledge is powerful, and attitude is like fuel for the soul.
I have seen so many patients with the unbelievable will to survive and live through the worst of illnesses.
The belief that I will get better, to overcome, is what keeps me going. It fuels my own fight against GPA, reminding me that even in the face of the seemingly insurmountable, hope, resilience, and a proactive approach can make all the difference.
My journey has been a testament to the power of advocacy, not just for myself, but for all those navigating the complex world of rare diseases. The path is challenging, yes, but the lessons learned – both personally and professionally – are invaluable.
I have learned that being a strong advocate for yourself is very fulfilling, you often find that healthcare providers have no idea about rare diseases, so you become frustrated when faced with the symptoms and changes within the disease.
We all just want answers.
I have now changed my job, where I mainly work from home, that was a huge adjustment, and still is.
I truly loved being in the field and on an ambulance taking care of sick patients. I have continued to enjoy my mountain bike, enlisted the help of a nutritionist, and changed rheumatologist to one closer to my home.
My wife is from central Mexico and is a fantastic cook.
We love being out, travel and Mexican food. Life has taken many turns, but I know that attitude, and a good outlook is huge, I witnessed my dad survive several life-threatening surgeries and stage 3 cancer, and he had the most positive attitude despite the over whelming odds.
