When the clouds come
overhead in the afternoon,
remember that all days
cannot be sunshine and blue skies.
You can't expect perfection
when you know there will be rain.
It's okay, you can't hear all
the good news you want in one day.
When I started my blog a year ago, I didn’t expect to be dealing with the issues I have now. Last year, I was just diagnosed with Hashimoto’s and finishing up my degree in English. These last few months have been defined by my health, particularly my thyroid eye disease. It’s sad but true. Eyes are a huge part of everyone’s life and when they’re sick, it takes a tremendous toll on how one might move about their life.
Last week, I went on a cruise with my dad’s side of the family. While it was great to see other places and learn about different cultures, it’s also difficult to be in the Caribbean when I’m extremely light sensitive. I started the trip with some daily headaches and no real eye problems. But by mid week, I was having a lot of double vision and my eyes were finished with the sun. Trading headaches for burning eyes and double vision wasn’t ideal, to say the least.
Before this last week, I had a few weeks of minimal eye problems. Thyroid eye disease has its ups and downs, some times are better than others. The months before my brief plateau were brutal. A lot of irritation, swelling, and double vision. One thing after another happened. The weeks prior to the cruise, my eyes weren’t my main worry. I certainly had concerns about my eyes going into the trip and how they could react to travel. But they weren’t entirely on the forefront until they began their downward spiral once more.
What these last few months have taught me is to expect the worst and hope for the best. It’s a weird way to live but it’s better to be mentally prepared for something to go wrong so that when it does, I can tread through rocky waters as calmly as possible. And when something does go wrong, I try to find the good in those situations. Things could be worse than they are. At least I can see out of both eyes. This is a difficult moment but it won’t least forever.
The purple tulip arrived a week ago
and will not leave. I glare at it through
a mirror reflection, trying to comprehend
how it might have appeared at this time
eight days ago. No one warned me
I would receive a tulip. Everyone I ask
doesn't seem to have an answer on
where it came from or why it's here.
The bright purple faded a bit within
a few hours of appearing. The purple
stem now has some red in it. It's too soon
to say what this plant is or if it means
anything at all.
"We will just wait," my doctor reassures me at the end of another long visit.
The limited resources I have to aid my symptoms
cause more damage than improvement.
So I accept what I cannot change
and wait for change to occur.
I just got my vision back after months of fuzziness,
oh what it's like to see clearly, such a wonderful thing.
With new glasses, my vision is close to what it was
before it drifted away without saying goodbye.
I accept this knowing my vision will likely shift
once again within the next few months.
As I wait for time to go by, I thank modern medicine
for relieving me from my personal hell for the moment.
These obstacles I face have no solution or cure,
the only thing I have on my side is time.
In time, this disease will pass thru my body
and one day it will become a memory.
There's no telling when that will happen,
every person who has this is completely different.
One year, two years, will eventually
blend together in my depths of my mind.
I wake up in the morning and do not feel like myself.
My body aches in unfamiliar ways.
The joints in my hands crack,
my right thumb somehow feels unnerved.
The muscles in my back and neck haven’t
been the same since experiencing multiple panic attacks.
I look in the mirror and do not recognize myself.
My cheeks are puffy, resembling a chipmunk,
reminding me of when I had my jaw surgery.
My eyes are strange, for my top lids are pulled back,
giving me an unwanted stare I don’t realize I have.
The puffy pockets underneath my eyes indicate
swelling that somewhat subsides by the time I say goodnight.
I look out onto the day and everything has changed.
My vision has been on the decline
for the last two months and has suddenly
taken a nose dive into the great unknown.
I can’t see much beyond twelve feet,
it’s like looking into a fish bowl,
everything is fuzzy or blurry or double.
I see double if I look up and tilt my chin down.
My reality shifts into two, pulling apart from one
another like something is breaking from being
overstretched, people often look like their souls
are leaping out of their bodies like fading ghosts.
This has been occurring since October, it seems like
a lifetime ago and yet it’s still jarring every time
I watch something transform into perspectives
no one else can see. People often have four
eyes, which is always the most alarming.
I haven’t felt like myself in a long while.
This temporary normal that’s constantly shifting
will never feel normal. I woke one morning
and everything had changed without a warning.
I’m still process everything that has happened,
it’s overwhelming and terrifying to have no
control over what is going on with your own body.
I just want to see again. More than anything,
I want to have my vision back.
I want to be able to see things far away
without fuzziness or double preventing me
from appreciating the beauty around me.
I want to walk around without feeling
my depth perception being off.
I want to be less sensitive to bright lights.
I want to look up with my eyes
instead of craning my poor neck.
I want to not feel my eyes focusing.
I want to no longer feel eye strain.
I want to no longer feel like my eyes are buzzing.
I didn’t realize how much I took my eyes
for granted until things unexpectedly shifted.
Though my viewpoint tends to focus on
the negative since they’re more overwhelming,
there are a few shining spots in all this chaos.
My eyes are not budging out of their sockets.
Though my eyes are sitting in different places,
it can go unnoticed if you don’t know it.
They may look a little different and certainly I can tell,
it’s not my biggest problem by any means.
I have a prism on one of my lens that corrects
the double vision when I look forward.
I don’t know what I would do without it.
The support I have from my family is unconditional,
they continue to help me through this process
as we figure out the best avenue to take
to relieve the discomfort so I can move forward.
This year has felt like it has been five years at the same time it feels like it’s gone by in a blink of an eye. For America, we’ve gone through so many ups and downs that I have forgotten much of what has happened because so much happens every single day. For me personally, I’ve gone through some of the highest highs and some of the lowest lows I have ever experienced in this last year.
I was diagnosed with Hashimoto’s in February. Something I knew was coming but had avoided for much of last year, besides the fact that there were some physical signs that something clearly wasn’t right. That took a while for me to process because it’s a disease you can’t physically see. Acceptance came about a month or so later. Then, in October, after having gained puffy eyes over the summer and seeing double in early fall, I was diagnosed with Grave’s. Most people cannot have both antibodies at one time.
Last week, my doctor told me that I’m a mystery because my numbers aren’t where she suspected they would be at this point. I’ve been through a lot of trials and tribulations in 2018 and unfortunately, I see this continuing into the next year; though I’m hoping it will be a little less intense. My health has been the majority of my lows this year. It’s not fun not knowing what your body is capable of and finding out long after the damage had been done is a tough pill to swallow.
However, a lot of good things have happened this year as well. I published a short film at the beginning of the year. I got TWO pieces published that I’m extremely proud of and so grateful they have found a home. The essay is about how I found writing and the ways it has helped me with my stutter. The poem is about my stutter and how what you hear is only the surface layer of who I am.
I haven’t said this online yet but I might as well share it because it’s something I’ve worked hard on and I’m very proud of. Earlier this year, I finished the first draft of a story that has the possible potential of one day being published as a book AND last month I finished a fifth draft of said story. I’m very happy with how it’s coming along.
On top of all that, a couple of weeks ago, I graduated from college with a BA in English with honors! I never thought that would happen and with everything going on this year, I thought it may not happen. But I’ve worked very hard and so, so happy with finishing my degree.
I’m sure 2019 will be full of new adventures, hardships, and possibilities. I’m excited and ready to see what the next chapter of my life will be. It will be an interesting year. Personally, it will be a big one. As a country, I’m curious to see how much of this year we will remember at this time next year. I’m hoping movements formed these last couple of years continue to speak up and fight for rights in 2019. I hope you all have a safe and great New Year!
I’ve been blogging for a few years now. And if I’m being honest, some weeks I don’t know what I should write about. I used to plan out what I would say but now I just wing it the day of. I know I should be better at planning things and get back into the habit of knowing what I want to say before I say it.
This isn’t a post about a struggle of blogging or writer’s block. It’s about feeling exhausted and tired after a long day and you choose not to write or post anything on the designated day. It’s about realizing that planning to do something doesn’t always work in your favor. Sometimes, life has a funny way of changing your plans with unexpected detours.
Two weeks ago, I woke up experiencing double vision. Tuesday I was feeling fine. Wednesday morning, I was seeing double and having eye pain. For the last two weeks, I’ve either had eye double or strain in one or both of my eyes. I’ve gone to multiple doctors, had an MRI, and been poked more times than I prefer. And I still don’t have a definite answer.
I think the most frustrating part about it is being told different things by different doctors. The neurologist ophthalmologist says one thing, the endocrinologist says another. It’s a lot of back and forth. Right now, the thinking is this could be caused by my thyroid. I was diagnosed with Hashimoto’s back in February. The neurologist ophthalmologist is pretty certain that my eye problem is caused by Graves’. I got a blood test to see if this is the case. It’s strange because the blood test I got last month and last week for my Hashimoto’s didn’t show any signs of Graves’.
Right now, I don’t know what’s causing this. The endocrinologist says Hashimoto’s can cause eye problems while the neurologist ophthalmologist says it’s very rare for Hashimoto’s to cause eye problems. Until I get the results of my blood test results, I have no way of knowing one way or the other. On Monday, I was at the neurologist ophthalmologist for a good three hours, which pretty much exhausted me for the day, hence why I didn’t post on Monday.
Writing is therapy for me. It allows me to write the thoughts that have been circling in my head for the last two weeks. I’ve been reading a lot more, both books and articles. I’ve been leaning on what makes me happy. Playing with my cat, watching Friends and This Is Us. I know I will be okay. If this is indeed thyroid related, it can take six months or longer for this to go away. That’s a long time but I’ve learned that time moves faster the older I get.