Three Things NOT To Say To Sick People

Hello, friends! You're still my friend, right? K, good. I've quite a few friends over the last few months, so I'm just checking. If you're coming from Kveller - welcome new friend! If you haven't read my story on Kveller about how I got dysautonomia and sought treatment, please read it now. Go on. I'll wait... (tapping fingers on table)

You're back! Great!

So, we live in a very politically correct world. People get offended really easily these days. I mean really easily. My dad likes to tell me that I was born with no sense of humor sometimes because I get really irritated when people say stupid things to me because I'm sick...or because I'm Israeli. So, here are three things you should never say to a sick person, and, if you're sick - here's how to respond:

1. You should really try [insert diet name here]... it worked wonders for my cousin who wanted to lose weight! Problem:  I'm not really trying to lose weight and I've been on nearly every diet. Response: Thank you so much for that information. Unfortunately, losing weight isn't my main concern. Right now, my brain is sending signals to my [insert part of body here] - it's a mis-wiring and diets don't really help. Thank you for your concern, though.
2. You're so lucky to still be working! Problem: I'm not sure if we'd call that luck so much as my symptoms aren't as bad as other people's symptoms. Response: You're right, I'm lucky enough to still bring in an income when others cannot but please keep in mind that I often struggle to get myself into the office and I usually feel like hell when I do. That's not luck. It feels like stupidity sometimes.
3. At least it's not cancer! Problem: not every cancer diagnosis leads to death and/or rounds of horrible debilitating chemo/radiation. And the two medical issues are so vastly different that there's really no comparison. I've heard others with dysautonomia who have had cancer state they'd rather have cancer than dysautonomia. Response: None. Just punch them in the face. Alternatively, you can say "wow, that's really offensive. You don't see me at my worst, so please don't ever compare my medical disorder to another medical disorder". (You should probably go with the alternative)

I know we live in a PC world and we can always walk away from stupid comments but it doesn't make them hurt any less. Have compassion when you're talking to someone who is sick. I'll follow up later with things you SHOULD say to someone who is sick.

Trying Not to Puke

Good morning! If you're wandering over from Kveller - WELCOME! This is a space where I share my thoughts, feelings, symptoms, and the every day life of living with dysautonomia. Today's topic: vomit. It's ok if you want to back away now or go look at some less icky posts.

Over the last week I've been feeling really sick. First I was ACTUALLY sick with a stupid virus but when someone with dysautonomia get sick, it usually takes us a billion times longer to get over whatever illness we had. A cold can last around a month. The flu? Try two weeks. A stomach bug? About a week or more with lingering symptoms. I had some undefined bug that left me sidelined and...NAUSEOUS!

The nausea is persistent. It won't go away. I've tried nearly everything including peppermint tea, peppermint/lavender essential oils (smells pretty, does nothing for me), ginger, ginger chews, ginger candy, ginger tea, Vernors ginger ale (I love this stuff), emetrol, Pop Tarts, sugar syrup, cola syrup, cinnamon tea, cinnamon oil, eating nothing but soup, eating nothing but liquids, and, of course, actual medication. I also tried sea bands.

How's that for a laundry list of crazy things to try?

Anyway, as I sit in the office, I'm doing EVERYTHING I can to not throw up. Including, but not limited to, drinking various teas while sucking on a ginger candy after taking my anti-emetic. I feel a little helpless and a little hopeless. For many patients with dysautonomia, eating is a luxury. I'm not that patient. I can eat but it doesn't always stay down...if ya know what I mean. So this is what I'm left with today. Feeling gross while at my desk, trying to focus on anything OTHER than the gremlin that lives in my stomach and his current hangover that's leaving me nauseous.

Any questions?

It's a Rough Day

I want to sleep like my dog.

Since getting sick, I've encountered symptoms that would make anyone want to jump off a roof. Imagine being nauseous all the time. For my fellow ladies that have been pregnant - imagine feeling like you did in your first trimester all day long without reprieve. That's just one symptom. Lately, my eyes have started going blurry.

Last night I went to bed with the start of a migraine. Usually I can take some medication, head to bed, and wake up feeling better in the morning. Just not this morning.This morning I woke up with the same migraine and now my eyes are going blurry.

Let's back up a bit. This new symptom of blurry vision freaked me out enough that I sought the help of another ophthalmologist. So, I asked my dad to drive me on Monday to have a comprehensive exam. Turns out, I have retinoschisis but that's not what's causing my issues. I also have a misalignment of my eyes...which could totally be causing some of my problems. At the very basis of it, I have dry eyes and was told to use OTC eye drops. Except they don't work. And my eyes are really blurry today.

Migraines are common for dysautonomia patients but I can usually take meds to dull the pain. Right now, it's not working. To add insult to injury, it's a dreary day outside, so emotionally I'm feeling matching my mood to the color of the sky.

I'm having a rough day and it's only 8:15am. I have a killer migraine, spots on my hand, my hands are puffy, and my eyes are blurry. While I know some of this will likely clear up by the afternoon, I'm envious of my sleeping dog who just cuddles up wherever he is and falls asleep. I don't have that luxury. So, for now, I'll just have my little pity party while I drink copious amounts of Gatorade.

Happy Friday.