It's been 266 days since I diagnosed. 7 months & 11 days. 5,424 hours.
It's been a rough 7 months. But things are starting to level out.
This right before my first MRI, about 10 days after the headaches started. I was exhausted but determined to have my hair & makeup done since I was going out in public.
This is day 17 of headaches, little sleep, blurry vision, and no makeup. I had some wicked dark circles underneath my eyes. And I cried. Often. I was exhausted, I had an upcoming wedding I was supposed to be photographing, I couldn't work, and no one knew what was wrong. I just wanted some relief.
A day and a half after my diagnosis I went in for the first emergency eye surgery at 8 am. Waking up from an 1.5 hour long surgery, sucks. I was nauseous & my whole face ached.
Less than a week later I came home from the 2nd eye surgery. It took less than 30 minutes, waking up was much easier, and they didn't need to put a patch on it. I was now the owner of two swollen black eyes with gross scars across the lids.
7 months later, my healing has reached a plateau and both myself and my doctor believe that I've gained back as much as I'm going to. I have very limited peripheral vision. I have blind spots throughout each eye that make reading and seeing small details difficult. It's harder for me to differentiate similar colors & I have to really work to see things in the dark. I haven't driven a car since June. I started on 2000 mg (8 pills) of diamox to control the cranial fluid pressure & I am now down to 750mg (3 pills). My pressure hasn't gone back up, I haven't had any headaches, and my vision has remained consistent for several months. My hope is that by the end of this year I will be off diamox completely & I'll officially be in remission.
7 months later, I still have an amazing fiance who has stood by me through everything & watched countless of hours of HGTV while I laid in bed listening. I have the most supportive family I could ask. I have a business that is slowly growing again after taking an entire busy season off. I am blessed in every area of my life, no matter how difficult each day may seem. I thank God for every day I wake & go to sleep without headaches & for a life surrounded by people I love. This disease may take a toll on my body, but I'm constantly fighting to get healthy again & live life as normally as possible.
A short two weeks after my surgeries we went to the beach for my family's annual vacation. The diamox makes me allergic to the sun, so I had to stay bundled up & out of it.
3 months after the surgeries, and this was one of the first times I put on makeup. My eyelids were sensitive and putting on eye makeup wasn't an option for a long time.
6 months later & I'm as pale as a ghost. But happy to not be blind & excited about the little bit of snow we got!
Just recently had an opportunity to get my makeup professionally done & this turned into a trial run for the wedding. This was a rare moment where I felt good about my appearance since the surgeries.
"Your illness does not define you. Your strength & courage does."
