Kat's PIC onset coincided with her thirtieth birthday. Since developing the condition, she has had a number of flare ups and is now considering what her treatment options may be going forward...
My PIC story began the week of my thirtieth Birthday. I guess they don’t call it “Dirty 30” for nothing! I was serving at a local bar and thought to myself “hmmm, it seems really dark in here tonight.” I remember ending my shift, getting home and walking up my back steps. Everything seemed darker than usual, and I thought it was weird that my eyes were not adjusting to the dark like they usually do. I fumbled for my keys, but I could not see well. I stopped and kind of looked up and noticed that my neighbor’s flood light wasn’t on… or was it? I fully picked my head up at this point and I could see the light out of my left eye. However, my right eye was black. My heart sank and I don’t remember my next thought, but I do remember feeling confused and a little scared. Managing to find the correct key, I entered my house and started closing one eye… and then the other. I did this for a few minutes. At this point, my eyes still hadn’t adjusted. Something was seriously wrong but there wasn’t anything I could do until morning.
The next morning, I woke to find that the vision in my right eye was extremely different. I felt like I was looking through meshwork. Things were dark, spotty and inconsistent. I had what seemed like, several blind spots. I continued with closing one eye, then the other. No change…
Already being a person who has corrective lenses, I called my Optician’s office. They called me in immediately but “didn’t see anything.” I was bewildered. Was I imagining this? I said, “well then why can’t I see.” He looked again and said “There are some pigment changes, but I’m not sure what this is. I will refer to you a retina vitreous specialist.”
I was referred to a local specialist who saw me within a few days. He was great and reassuring. Telling me I have “MEWDS,” which isn’t common but it “should go away.” We opted to stay away from treatment and just see what happens.
After a few months, my vision was back to normal. Unfortunately, this did not last long. About three months of being symptom free, things changed again. What I now call my “strobe light” appeared-and was 24/7. Let me tell you that having a constant dance party in the corner of your vision is not fun. Things were dark, spotty and narrow. I was sensitive to light and often saw “afterimages,” – like the ones you get after having your picture taken. I was also noticing floaters.
My specialist told me it was strange that it came back, but it does happen. He saw me at a different office with better equipment. He said, “it’s definitely MEWDS but it could be something called PIC.” At this point I’m like “okay, you guys are just making up words now.”
He told me not to worry and we will wait it out again.
Well… it did go away. Then it came back. {insert steroids here} Went away. Came back. {Insert Valtrex here… embarrassing} Went away. Came back {insert another doctor at the same office here}.
Each time my vision would not really return to normal, and sometimes new symptoms appearing. By the time I had my fifth flare up, I was sent to an Inflammatory Eye Specialist and Upstate Medical University. He is WONDERFUL! He told me I have Multifocal Choroiditis with Panuveitis and Punctate Inner Choroidopathy - phew! A mouthful. He was also very blunt with me- telling me that not many people have what I have. He said it is rare and because of that, we don’t really know what to expect. He told me that “this is the beginning of a long relationship.”
Those words took some time to sink-in, but it was oddly reassuring as well. I think we all expect to go to the Doctor’s to get fixed and to feel better. Having someone tell me that this is something that is not well understood and something I will have to handle for life, really offered a new perspective. He suggested that I join a support group on Facebook. I have to say- it has helped me feel less alone.
I see myself as a tough and resilient person. This struck me HARD. Harder than I had imagined. There is something that rattles you to the core when faced with the possibility of losing your vision. I took my moment of feeling weak and defeated and really let myself feel that. I understood that not everyone understands. Sometimes, people just don’t know what to say when you tell them about this “rare thing.” I mean- to be honest, they look at you like you have three heads and are living in a land of make-believe. I got that look enough times to make me feel like it was all in my head.
… it’s not.
The steroids tell me it’s not…
The blind spots tell me it’s not…
The injections tell me it’s not…
My strobe light, the kaleidoscope vision, lack of peripheral vision, seeing amber colors, the discomfort, blurry vision, the good days and the bad days…
It is NOT in my head.
This is my reality, and I must learn to cope and make the best of it because the truth is- it could always be worse.
I came to this conclusion and decided that there isn’t anything I can change except for my reaction. I have cut out gluten (not going to lie- I really miss beer) and most dairy. I have also began eliminating any inflammatory triggers. I have noticed a slight improvement. Now that I have also tapered off the steroids, not only are my mood swings gone but my symptoms seem to be staying away for the time being.
I know PIC will come back. It’s on a schedule, actually. About every three to five months, PIC comes back to say hello, giving me a range of new or worse symptoms. I am waiting for the next visit. The next round of steroids and maybe immunosuppressants.
I don’t really know what to expect… none of us do. I try not to worry when I read stories of people requiring surgeries or going blind. It does worry me though. Why wouldn’t it? But we can’t live in a life full of worry or “what-ifs.” We just have to LIVE, make the most of life, and play the cards we are dealt.