Monday, August 31, 2015

Super HOT!

Hi friends! I know, it's been a while since I sent along a blog post for your entertainment. It's been TWO weeks since I had to miss work because I was ill. This week will be week #3 - so I'd like to keep that streak going.

I'm learning some new things about myself. For one, I'm super hot. I don't mean physically - I mean temperature wise. Lately, I've been so super hot that I had to do this:
Can you see the ice pack??
Yeah, I had to wear an ice pack on my chest yesterday because I was so HOT that I was afraid I'd pass out. It wasn't fun, to say the least. I was sweating profusely at my cousin's house last night. Not really the kind of look you want to show off when you're surrounded by family. Upside: you're surrounded by family. Downside: you feel gross.

Anyway, my body temperature fluctuates a lot. I've had this problem for about 12 years now but it's worse now. Coming to terms with how hot I am isn't easy. It makes me so irritable that I wouldn't even want to hang out with me. None of this helps with Michigan's ever-changing weather. One day it's hot (90 degrees!) and the next day it's not (64 degrees!) - it happens that quickly around here.

If you see me outside walking, and I'm not accompanied by anyone, please walk my ass back inside and remind me that being outside in this heat - while I'm already hot - will likely make me pass out.

Monday, August 17, 2015

The Good Days

Every once in a while I have really good days...or a few really good days in a row. I'm on a hot streak right now (not to get ahead of myself). I was able to put on jeans this morning. This may seem trivial but usually any pants that add pressure to my abdomen are a no-no. I spent most of my weekend in compression leggings (disguised as yoga pants), so to put on jeans, a nice t-shirt, and jewelry is a g-d send for me.

We spent the weekend chillin' - while I grocery shopped on Saturday, we also spent time with my stepdad and also my dad. It was nice! It was great to eat food without worrying that I might hurl it up later. Even if my body didn't fully LOVE what I ate, I got a chance to eat. This disease gives you perspective.

I also got a chance to potty train my three-year-old. I know, I'm a glutton for punishment. But if I'm feeling well, I want to take advantage of it. This kid sleeps well but is a pain in the ass to potty train. When he doesn't want to go, there isn't a bribe in the world that will make him sit on the potty. It WILL make his two-year-old brother sit on the potty, though. Go figure.

Bottom line is that I got to spend quality time with my family this weekend and it felt really good to feel moderately "normal". I'll take the good days, as many as I can get, and hold onto them with all my might. I'll remember them when I'm having bad days because I know that this too shall pass. I may never be free from dysautonomia - I'm coming to terms with that but those good days are so helpful in reminding me that there ARE good days.

Wednesday, August 12, 2015

The Relapse

When I relapse, I wear a lot of baseball hats - to hide the gross.
One of the things I've learned with having dysautonomia is that just when you're starting to feel great (and you're filled with false hope), you relapse. It's like a big crane dragging you down, plunging you into a pool of water and you don't know how you're going to come out of it. Plus, the brain fog.

Sounds shitty, right?

It is.

A lot of "what's wrong with me" is classified as a heart problem but this relapse has more to do with gastric issues than my heart. My form of dysautonomia causes my entire nervous system to go haywire and about 70% of your nervous system is in your abdomen. You do the math.

I could feel this one coming on. Monday, while sitting at work, my arms and shoulders felt really heavy. After dinner, my stomach started cramping. If you've ever had a cramp in your leg, imagine that cramp in your abdomen. Over and over and over. That feeling continues today. If you think it's painful, it is - in case you were wondering.

To keep this under the TMI radar, let's just say I haven't been able to keep food down in two days. And I look like I'm 5 months pregnant. So I have that going for me. I can't eat AND I look like I hate a gingerbread house.

Relapses, for me, usually only last a few days but there are psychological effects, too. For one, I hope I don't get fired. That is at the forefront of my mind. I'm working remotely and I hate not being in the office. And I'm constantly fearful that I won't keep my job. It happens to A LOT of people with invisible illnesses.

Another psychological effect is feeling "less than". I feel like I'm less than a good mother when I have a relapse. Yesterday I had my oldest home with me (his body broke out in hives and he was sent home from school). Imagine having the worst stomach flu of your life. Now imagine having to work while you feel sick AND you have a moody, itchy, and irritable 3 year old at home with you. That was my day Tuesday. I don't mind the working part but I felt like an awful mother when I had to tell him that I needed to stay on the couch so I didn't throw up on our carpet. It's a wonderful feeling, right?

Feeling "less than" can be the difference between being bed ridden and getting up to do work. The longer I feel like this, the more likely I am to dive into a depressive state, which makes climbing out of a relapse that much harder. So, for now, I'll sit upright, try not to lose my breakfast, and finish writing my metadata.

Monday, August 10, 2015

Brain Fog

Brain fog. It sucks.

Ever woken up from a drunken bender and thought "why can't I focus today?!?" or "why does everything feel so fuzzy?" You have? Great! Well, not great but then you can kinda understand where those of us with dysautonomia come from when we say we have brain fog.

Let's back track a bit.

Friday I took my last dose of prednisone for a sinus infection that still won't go away (and I won't concede to it being a cold). I felt like the world was on fire.  I had so much energy that it gave me a false sense of hope and I went about my day. I over did it. I woke up both Saturday and Sunday with brain fog. That inability to think rationally (or at all) killed my weekend. I was stressed and agitated. Even napping didn't help.

Then came the little guy's 2nd birthday party. Talk about over doing it. While it was amazing to see him enjoy himself around his family and friends, the aftermath left me feeling like an arthritic old lady. My joints hurt and I was exhausted. Plus, the little prince would NOT go to bed...or stay in bed. Yay for the terrible twos.

This morning, I woke up with major brain fog and also woke up feeling like I was kinda drunk (but I don't drink - for the record). Usually I call into work when I feel like I can't drive but I got up, showered, took some energy chews, drank a ton of water and felt functional.

Brain fog, however, doesn't always disappear and people with dysautonomia can't just *snap* out of it. You can see when we look out of it. We are listening to you speak and taking everything in but it won't register for a while. There's no cure for brain fog - it just has to pass. Go easy on us - it's all we ask of you.

The Beginning

The Beginning of Being Sick

Welcome to my blog! I'm not sure if anyone will read this but I'd like to say "hi" to anyone who comes across this. I ...