While I was fighting for my dignity, life threw another obstacle in my path. For months, I balanced a dual mission: organizing my first consultation in Belgium and desperately searching for a diagnosis for my worsening foot.
- The Bureaucratic War
This time I was determined that I will make the State join my fight. Dealing with the National Health Insurance Fund was a battle of its own. To have the costs covered abroad, I had to navigate a mountain of paperwork. I led the entire correspondence with the Belgian hospital myself – shifting through departments, medical records and pushing through the red tape. I wasn`t just a patient; I was my own advocate and administrator.
- A Dark Diagnosis: Osteomyelitis
Just days before my departure, I finally got a diagnosis for my foot: Osteomyelitis. The doctor`s verdict was cold – he suggested amputating my fifth toe. The therapy he prescribed caused my foot to swell like a balloon, and I spent the final days before my flight managing a painful, draining infection. Flights were booked, accommodation was paid for, and there was no turning back. In a stroke of luck that felt more like a miracle, the infection subsided just 24 hours before we were set to leave.
- The Great Journey
With my mother by my side, again – who relied entirely on me for communication – we embarked on what felt like an adventure. Using a transport app, I navigated us through foreign cities, trains, and buses. Landing in a different city didn`t stop us. When we reached our lodgings late that night, exhausted and hungry, I felt a surge of pride. We hadn`t gotten lost; I had led us there.
- The Consultation: A Change of Plans
The Belgian healthcare system was a revelation – organized, welcoming, and efficient. Speaking with the surgeon, I felt a strange sense of calm, even when he delivered news I didn`t expect.
- The Shift: He advised against the Artificial Anal Sphincter I had pinned my hopes on. He deemed it too risky for my specific condition, especially since I wouldn`t have specialized post-operative care back home.
- The Alternative: He proposed another surgery: Appendicostomy with a Chait Button. It wasn`t what I had envisioned, but his expertise was undeniable. I decided to trust him.
- One Battle at a Time
Returning home with mixed emotions, I sought a second opinion for my foot. I found a specialist in osteomyelitis who offered a lifeline: amputation was not necessary. Removing the joint would suffice, and since the infection had stabilized, it could wait a while.
- The Plan
I began planning for a dual surgery marathon in a few months. My goal was to synchronize the foot surgery with the procedure in Belgium, minimizing my time away from work. I was still playing the game of “Normalcy”, but now, I had a roadmap to a better life.
Taking control of your own medical journey is exhausting, but sometimes it`s the only way to find the truth. Have you ever had to be your own nurse or advocate because the system failed you? Or have you ever had to change your plans last minute and trust a completely new path? I`d love to hear your “Great Journeys” in the comments. And don`t worry, there is no little story, every person has their own fight. Don`t forget to subscribe to follow the next chapter of my life story.
Continue reading: Chapter 12
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