Navigating Life with Glaucoma: My Journey and Lessons Learned

Living with glaucoma has dramatically changed my life, including my vision and daily experiences. Here, I share my journey and the lessons I've learned along the way.

The Impact of Vision Loss - Living with glaucoma means I have to adjust my daily life. The loss of peripheral vision means I now consciously turn my head or tilt it further to ensure I don't miss anything. This adjustment has extended to my confidence in driving; I now avoid driving on unfamiliar streets. Public transportation or my husband driving are my preferred options. My main concern remains ensuring I'm always aware of my surroundings to avoid accidents and keep myself and others safe.

The Challenges of Treatment and Surgery

Challenging Medical Interactions - Early in my journey, I faced numerous challenges with treatment and doctors. The specialist I was referred to was particularly difficult, leading to complications. After a trial shunt failed, my eye pressure skyrocketed, causing me excruciating pain and emergency room visits. The surgery damaged my vision even further, creating a blind spot. On top of this, a range of eye drops failed to slow the progression. The side effects, including severe fatigue and clinical depression, pushed me to take a stand. After two years on the waiting list for surgery, I finally found a specialist who promptly performed both trabeculectomies, restoring some stability. Despite the challenges, I learned valuable lessons about advocating for myself, including researching and taking personal responsibility for my health and eye care.

Chronic Glaucoma and Prognosis

End Stage Glaucoma - My condition is chronic angle closure glaucoma, with end-stage vision in my left eye and moderate in my right. I was misdiagnosed with severe migraines until an attack that didn't break led to several ER visits and further complications. Over the years, I've undergone various unsuccessful procedures, including several iodeotomies, lensectomies, and trabectome surgeries. I've been through many eye drops, some for inflammation, others to prevent infections or manage pressure. In the beginning, I had to visit the eye doctor multiple times a day, but now, after almost 8 years, I go every 4 to 6 months, though more procedures may be necessary as I age.

Stability and Future Outlook - Currently, I'm stable and medication-free. I only need reading glasses, and life is similar to that of any woman over 40. However, I am more cautious and prone to small accidents. For example, I might mistake a shadow for a step or a small insect for something closer than it is. Despite these challenges, my life remains relatively normal, thanks to the knowledge and proactive approach I've developed. I have learned the importance of understanding my condition and managing it through lifestyle and dietary choices.

Lessons Learned - My journey with glaucoma has taught me several important lessons. Firstly, the importance of standing up for myself and not fully trusting one doctor. Secondly, the value of researching and understanding my condition, enabling me to make informed decisions about my care. Lastly, the significance of making lifestyle and dietary changes to support eye health, reducing the need for additional interventions in the future. As I continue on this path, I remain optimistic about the future and the continued management of my glaucoma.

Living with glaucoma has certainly been a journey filled with challenges, but it has also been an opportunity for personal growth and resilience.