I’ve been taking a hiatus from blogging.
If I have to be honest, I have been taking a hiatus from a lot of things because I simply lack the bandwidth thanks to some health things. It sucks, but it is what it is.
What’s going on with me? Well, in a nutshell: we don’t actually know and that in and of itself is quite possibly the most infuriating thing for this anxiety-ridden control freak. -_-
Earlier this summer, I started breaking out in hives randomly. Normally that wouldn’t be that big of a deal, right? Take some Benadryl and move on with your life.
Except that I did do that. I took the Benadryl. The Zyrtec. The Zantac. The Allegra. Over the course of the last few months I have taken all of them at extremely high doses (as directed by my doctor) and my hives have not abated.
If anything, they have increased and added such lovely companions like: facial swelling, angioedema, and joint pain. Some mornings, I wake up with half my face swollen and 60% of my body covered in hives. It’s unbelievably frustrating.
I have been to specialists. Allergists. Dermatologists. Primary Care.
I have had SO MUCH blood taken and so MANY tests.
They have photographed my hives. Remarked on them. Even cut one off.
I have been prescribed a medicine cocktail that has very real, very serious side effects.
I still have hives. They burn to the touch. They itch. Some of them have left bruises. Last night I had them on my eyelids. It’s stupid.
I have changed the detergent to hypoallergenic.
Got air filters for the apartment and vacuum borderline obsessively with a vacuum with a HEPA filter.
I have cut or reduced items in my diet like dairy, soy, and gluten.
We got rid of the inherited upholstered couch in favor of a newer leather one in case it was environmental.
My pillows all have allergen-cases on them.
I have tried to meditate and engage in activities that bring my stress levels down.
So far, nope.
I have gone to work with my face swollen and my arms spotted.
I have scared kids at Walmart when my lips look clownish and the splotches get bigger and cover huge chunks of my cheeks.
At the end of the day, here I sit. I started this entry at almost midnight on a Saturday night and I am at my kitchen table. My feet are swollen and tender because there are hives all over the bottoms of them and in between my toes (which, BTW, is a special kind of eff you from the universe. Toes should be off limits). My knuckles are bright red and they ache from the exertion that is typing. I have hives starting on my lower back and the tingling as they pop up is making me feel like I am losing my grip on my sanity. I have heartburn that is making my chest and throat burn like fire. My anxiety is pretty high because I accidentally ate something that has MSG in it which is one of my known “guaranteed migraine” triggers. That is what I need, right? A migraine on top of HivePocolypse.
I am not ok.
I am going to be brutally honest in a world where we applaud brutal honesty in everything except for admitting perceived weakness: I am struggling.
I am struggling with my diagnosis and lack thereof. I am struggling with my symptom management. I am struggling with managing my day-to-day life. I am struggling to make sense of it all. I am struggling with admitting that I am actually struggling. I am struggling with the pressure of articulating to other people what I actually need help with to alleviate the struggle. How messed up is that?!
I have cried, I have been angry. I have lamented and I have ignored.
The simple fact of the matter is: it’s a hard season of life right now.
The Doctors have no idea what causes my hives. It’s like a giant guessing game, even the name they give it indicates they have no idea: Chronic Idiopathic Urticaria. Their current best guess is autoimmune. They are throwing around some heavy diagnosis words that they then tell me not to google. I have an anxiety disorder. I always google. It doesn’t help. I’ve started immunosuppressents that scare the shit out of me in hopes that it makes it better. I have even more tests scheduled for next week and I will likely see even more specialists.
It’s so discouraging. 😦
My skin is spotted and itchy. My body hurts. My weight is fluctuating up and down like it has a mind of it’s own and certain whole types of clothing are impossible for me to wear right now without my skin freaking out.
So what do I do with this? How do I cope? How do I find the silver lining? If you are someone I know in real life, you have already heard all this. So why am I sharing it again?
My answer is: I don’t know. I have no freaking clue.
And I think that’s ok.
Social media, the blogosphere, and how we interact with our world often seems to be based on the premise that “everything is fine.”
When someone asks you how your day was, you automatically answer: “Fine.”
Why do we do that?
Statistically speaking, we are not all fine all the time.
I think it’s because we are socialized to not burden other people. To see illness or sadness or frustration as “negative” emotions. We live in a world where extreme positivist is aspired to. A world where “making the best of things” is demanded.
People who don’t exude positivism in the presence of adversity are seen differently. Almost as if they aren’t trying hard enough.
Debbie Downer. Negative Nancy. Bringing us all down.
So, we bury our struggles. We post that next picture on Instagram that shows an image that implies that we all have our shit together all the time. We carefully edit out the complete chaos that our kitchen is to show the perfect angle of the cake our kids made. We delete the actual realness in favor of a different version.We post the lie and we hope to God that someday our actually life will match it. We “get over it” because there’s a limit to the grace we are extended for not being ok.
Because, you know, that’s healthy and good for our mental health. *eyeroll*
Even more than that? We tend to perspective-shame people who do share that they are struggling if they don’t meet some of the pre-prescribed “Ok” struggles.
So often we tell people that “It could be worse.” I literally had someone tell me the other day that “at least I don’t have cancer.” (FYI: that’s not helpful.)
We encourage people who are going through hard times to “find perspective.”
We gently admonish them to not “wallow.”
We put a timestamp on grief.
We pride ourselves on what we can endure with a “good attitude.”
On top of allllllll that: we tell people that we will think of them and give them our thoughts and prayers and then we go on our merry way, like we have done our societal duty. We tell those that are living in a season of suck that it’s “Part of God’s plan.” (Another FYI: please do not tell me that a Divine Plan is for my feet and face to become so swollen I look like patient zero. I don’t believe in the concept of a Divine Sadist.)
Can we pretty-freaking-please change the conversation?!
What if we all just acknowledged the pain in our colleagues, our neighbors, our friends, and our family instead?
Here’s my thought:
The next time someone tells you something terrible, acknowledge the terribleness.
Yep. It’s THAT simple.
Don’t offer advice. Don’t offer perspective. Don’t comment on how your best friend’s roommate’s cousin cured something with kale and water polo. Don’t trivialize it.
Just….acknowledge the suck. Stand with your friend in their pain and in that standing, offer to help hold it for a moment.
That brief moment of respite, of validation and acknowledgement means the world. At least it does to me.
There will be time for advice at some point. There will be time for the sharing of ideas, the perspective, and probably the cheering up.
But that moment comes later.
Sometimes life is hard. Sometimes things happen that we cannot begin to understand. Sometimes what seems like a little thing, is actually a really big thing.
Our world is full of beauty and joy and happiness.
It’s also full of tragedy, horror, and sadness.
Pain is part of the human experience. It’s not a competition. We all experience it and the levels of which we do are completely valid to our own experience.
Let’s acknowledge those moments. It is in that acknowledgement that we can expand our understanding of the human experience that we all have. We can share our real experiences with each other and as such expand our interaction with the real world and strengthen our community bonds. We can admit, out loud, that everything is not fine all the dang time.
I’ll go first.
Today, I am not ok. I might not be tomorrow either.
Today, I am struggling and it’s really hard for me to openly admit that.
Today, I realize that I need to ask for help to get some things done and in order to do so, I need to admit that my life is kind of a glorified shitshow and my carefully curated image of generally have it all together is not accurate.
Today, I looked in the mirror and I wanted to cry. So I did.
Today, my legs are covered in hives and they itch SO FREAKING BAD.
Today, I am acknowledging the suck in my situation and allowing myself the grace to admit it without shame.
These are the raw emotions and I acknowledge them.
If you are in a season of suck right now, I see you too. I stand with you and I It acknowledge the absolute shitshow that life can be.
It is with that declaration that I leave you with this:
Your pain matters.
Your pain is real.
Your emotions are valid.
P.S. If you want to learn more about Chronic Idiopathic Uritcaria, check this link out.