Here’s what’s been going on with me:
A few weeks ago while in the shower, I thought I got shampoo in my eye because I had sudden patches in my left eye’s vision. This stupidity seemed very typical of me, and I didn’t think too much of it. After a week, these grey patches had quieted into a small blurry spot in the center of my vision. Then, while trying to relax in a jacuzzi at my parents’ house, the patches suddenly returned. The next morning I went to my mom’s ophthalmologist, and thus began one of the scariest times of my life.
The ophthalmologist took pictures that showed my left eye was hemorrhaging “like an eye mini-stroke,” and the pooling blood was causing my blind spot. (You know when you have a vision test and you’re supposed to read the letters? I couldn’t even see the giant E at the top.) I was sent semi-emergently to a retinal specialist in Grand Rapids, and there further pictures and an angiogram confirmed that my eye was hemorrhaging in about 8-10 places. The pics of my eye looked like craters on the moon. Also, for some reason the blood flow into my eye was slow – 20 seconds when it should be about 4. It wasn’t inflamed enough to suggest an arterial occlusion, so that was some good news. But if it developed into an occlusion, that could mean I’d lose my vision entirely.
Thing is, this should not happen in someone my age with absolutely zero risk factors. (I’m pretty sure the specialist thought I was lying when I kept answering “No” to his ROS questions.) So, the specialist ordered about 14 blood tests and an MRI/MRA to sort out what the hell could be causing this. He sent me home – my eyes fully dilated for 10+ hours and exhausted without any treatment – with the knowledge only that “it could be something pretty scary.” (A terrible thing to tell a medical transcriptionist, btw. Knowing the multitude of things that COULD be wrong = hypochondriac freakout.) Then, because of some office snafus, my MRI wasn’t properly scheduled and no one bothered to call me for 4 days until my mom called to yell at them. So I went from being treated as an emergency on Monday to not hearing anything for the rest of the week. DID. NOT. HELP.
Since my eye externally looks completely normal and I’ve had no pain whatsoever, this all would’ve gone completely undetected were in not for my blurry vision. But something is “seriously wrong” as an underlying mystery diagnosis. Plus now I’m afraid to bathe because that seems to be a hemorrhage trigger. So that’s awesome.
This has all been completely new to me. Aside from having strep so often as a child that I had to have my tonsils out, I’ve had near-perfect health my whole life. I’ve sprained several ankles, sure, but I’ve never been diagnosed with anything, never been on medication, never had a cavity, and I’ve never worn contacts or glasses. I have NEVER taken my health for granted. I have felt incredibly blessed my whole life to have the health I’ve had. So maybe I’m due, I don’t know.
As an avid reader, as a writer, and as an artist, the possibility of losing my sight is heartbreaking. As someone planning a wedding and finally making plans for a future I’m looking forward to, being told I might have something that could kill me (“do not exert yourself” was expressed, as a blood clot was another possibility) is even more terrifying.
I don’t do well not having control, and I was properly freaked out for a good while. I hate not knowing. At least if I knew what this was, I could find a way to cope, to prepare, or to move forward. But the not knowing is the hardest part for me. (They HAVE ruled out the random test for syphilis, so I guess that’s something.)
But here’s the thing: It’s always during times of freaking out that I feel most held. You are free to not believe in God, but I do. During my times of fear, I always feel like God goes, “Ah-ha, see? This is what I’m here for,” and then I feel cocooned in a love/peace that I can’t explain. This has happened time and again, and it’s happened now. I again have reached a place of acceptance that I’m not in control, and “let whatever happens happen” is an incredibly freeing headspace to be in. I don’t want to go blind or die; I want to live. But at least I’m being given time to evaluate and appreciate the life I’ve had. This too, in a way, is a blessing.
And that’s not all. For a long time in my life, I didn’t let people in. I didn’t let people help me. (I certainly never would have publicly acknowledged that I was terrified.) Now, going through THIS crisis, I feel incredibly blessed to have so many people who genuinely care about me.
- I have a mother who’s been a saint through this whole process.
- I have a dad who I know would do anything for me.
- I have a brother who was willing to watch my monster-cat while I stayed at our childhood home because he knew I needed to feel safe.
- I have a fiancé who’s called every day to check on me while he’s been out of state for work, and I know he’s worried but trying to joke and keep me calm.
- I have future in-laws who’ve taken it upon themselves to become MRI/MRA experts.
- I have friends I’ve known since childhood who demand updates. (My phone now knows to auto-fill “hemorrhage.”)
- I have college friends who’ve expressed concern and willingness to help however they can.
- I have a friend in Florida who called because she figured out that that might be easier for me than emailing since the whole problem is my vision.
- I have a church family who prayed for me the second they heard the news.
- I have family who’ve expressed their love in a variety of ways.
- I have online friends I’ve never met who don’t know what specifically is going on but express unquestioning compassion whenever I post something about needing mental/emotional/spiritual support.
Please know that I do not take any of you for granted. Your kind words and thoughts are extremely appreciated.
During my checkup this week, a visiting retinal specialist from the Philippines was shown a picture of my retinal hemorrhage and said, “Wow, that’s so rare I could have gone my whole life without seeing one.” My specialist reviewed my blood work and found basically nothing (thereafter getting creative and ordering a test for what is essentially cat scratch fever). I did finally have my MRI/MRA, and fortunately that came back as a normal study free of occlusions or vascular malformations. (Ever had an MRI? It was very hard for me to come out of the machine and not say to the tech, “I know Kung Fu.”) But basically, nothing so far hints at the cause of this anomaly. We decided/joked that maybe I would have this named after me, although we agreed “Sunshine Disease” doesn’t sound scary enough.
So now? My left eye’s vision has improved to 20/40, so that’s something I can live with. But it might never get better, and at any time I could hemorrhage again so it gets worse. On the one hand, it is wonderful to hear all the negative results of these tests. On the other, there is NO diagnosis and I’ll never know if this could happen again of if something worse could happen. Right now, there’s no way to treat this mysterious underlying cause.
So I’m still a bit freaked. I still need your prayers, bright thoughts, positive vibes – whatever you’ve got to throw my way. But I’m trying to hold to that feeling of being held and reminding myself to trust and let go. It helps nothing by being tense. And I think it’s important to appreciate the blessings I have, now more than ever.
- I feel fine and still “have my health.”
- I can see well enough.
- I’m not in pain.
- I have a God who probably knows what He’s doing.
- I have my people.
- And at least I won’t die of syphilis.
Praying for you
Thank you 🙂
Wow! What a story! Thank you so much for sharing. I definitely relate that when all hell seems to break loose, God’s presence, tender care and amazing sovereignty seem most close. I do believe He knows what He’s doing and, when us control freaks lose control, we can rest in the fact that He still has it! Praying for you for sure. 😉
Thank you very much 🙂
Keeping you in my thoughts and prayers. It’s a tough challenge I have no doubts you’ll overcome no matter what. You’re head is in the right place. Praying for the best.
I understand your fears completely. Keeping you in my prayers.
I had no idea you were going through such turmoil. I am glad to know that you are surrounded by loved ones. I will send healing thoughts for peace, strength and tranquility your way in a huge ball of sparkly white light.
Much appreciated 🙂
My thoughts are with you. I know how sudden health shocks us into changing our attitude towards life. Take care, keep the positive people close and stay true to yourself.
Thank you, Anita. 🙂