It Changed My Life

When a simple day changes your life forever, every day is lived like the last day of your life. Being diagnosed with IH has changed my life. After shopping online for new frames because I felt I needed a new prescription for my glasses, I was diagnosed with a rare disease that changed my life forever. My vision had become blurry while wearing my glasses. I went to the mall for a regular vision check at a local Lens Crafters after locating new frames I had wanted for months. Since I needed a new prescription I felt it was the perfect time to get them. After attempting to check my vision and the pressure behind my eyes, the optometrist had determined there was excessive pressure behind my eyes. Because of the excess pressure she was unable to get an accurate reading for a prescription as my vision continued to fluctuate. Instead of leaving with a prescription or receipt for my new glasses in hand. I left with images of the pressure behind my eyes, a new diagnosis of papilledema and a referral to the emergency room. I was admitted into the hospital the same evening after leaving the eye doctor.
The diagnosis that the optometrist had given was accurate. The emergency room physician had brought in an optical specialist to confirm there was excessive pressure behind both of my eyes. This is uncommon in young women my age, so the doctor asked many probing questions and concluded they wanted to do some additional test. This was the evening that I received my very first spinal tap. The spinal tap concluded that I had excessive cerebral spinal fluid on my brain. After spending three more days in the hospital I was introduced to my new neurologist. Before going home I was educated on my new diagnosis of intracranial hypertension. The doctors gave me a lot of reading material, and a follow up appointment with my neurologist to discuss treatment options and how to track my systems. Because my vision did not clear up after the spinal tap, I was also given an ophthalmologist who I would begin to see more often than I had prepared for. Living with IH can be very challenging as you attempt to live a normal lifestyle. Being able to live my structured lifestyle had become very difficult with my symptoms. I had to learn that my only option was to live with the pain of my migraines which could become sickening an unbearable. However, it was the other brain tumor like symptoms I found most difficult to cope with. There were times I would look at YouTube videos, read post on the IH Facebook Page and even read up on other patients that live with IH. This had become very encouraging, because there are many others like myself, who has it worse than I do. After one year of being diagnosed there was no progress and my condition worsen. After a year of seeing my specialists, having spinal taps done every 30-60 days. My neurologist had determined I was maxed out on the medication I was currently taking, narcotics could not be used for the pain and he was out options. After recovering from a recent spinal tap I had become sick. My migraines had reached a level that it had never gone before. I thought these were symptoms from the spinal tap. That evening I ended up in the emergency room as my symptoms had become worse. This resulted in another spinal tap to drain more fluid. It was determined from my 2nd spinal tap in 14 days that I would need to seek alternative action such as surgery.
This trip to the emergency room turned into a week in the hospital. After recovering surgery I returned back to work. My day started off very normal until I had to be rushed to the emergency room. Because of the lumbar peritoneal shunt doctors no longer feel comfortable performing spinal taps. Therefore, in this case of what was an emergency the doctors could only tell my mother, there was nothing they could do other than run test to see how bad it was and reach out to local specialist and discuss options. This was the day that the pressure had built up so much that I could not physically respond on my own to doctors. Though I was breathing just fine I could not open my eyes, speak, or move. After about an hour of running test, the doctors allowed me to lay flat on the stretcher and allow my shunt to drain the fluid on its own. After a few hours I came too and woke up to crying friends, a concerned mother and clueless doctors.
Ecclesiastes 3:1-8 tells us, Everything on earth has its own time and its own season. There is a time for birth and death, planting and reaping, for killing and healing, destroying and building, for crying and laughing, weeping and dancing, for throwing stones and gathering stones, embracing and parting. There is a time for finding and losing, keeping and giving, for tearing and sewing, listening and speaking. There is also a time for love and hate, for war and peace. In conclusion no matter what you may be enduring today, tomorrow always brings a fresh start. We much have relentless faith, and continue to be grateful for all of our blessings.