Sidelined...again

Last night, I took my older kiddo to the doctor to have him look at some weird rashes the kiddo has. It was a quick visit but it ended with the doctor saying "Are you feeling ok? You don't look well." No, I'm not feeling well. My version of dysautonomia is really wreaking havoc.

Lack of sleep is a major trigger for my dizziness and last night I did not sleep. Both kids were up several times. One wound up sleeping in bed with me. Yay. I woke up dizzy this morning. Very dizzy. And it's a crummy feeling. Here's what happens when I get sidelined like this:

• I wind up working from home, which isn't bad (I'm crazy productive at home) but I hate it. I'd rather be at work. I like my coworkers.
• I have to lay on my couch, laptop on me, to keep myself from getting so dizzy that I vomit. 
• Depression sets in. Big time. Granted, I have a lot of stuff going on in my life but when your health takes a tank, repeatedly, you get depressed. You remember what your life used to be like and you miss it. Depression makes everything worse. My symptoms are always worse when my depression is bad.
• My diet will consist of a lot of salt and electrolyte water. Sounds gross, right? There's nothing like putting sea salt on everything - all to keep your blood pressure from plummeting.
• If I have to go anywhere, I need someone else to drive me. I don't like to worry my parents, so I often just don't go anywhere unless it's urgent.

I don't mean to whine but if you work with me and you notice I'm not around, this is likely why. I can work through most of my symptoms but I can't move past the dizziness. So, I'm not really whining. I'm not even looking for sympathy - this is my way of letting the world know that just because I look OK, doesn't mean that I am OK. I'm asking for compassion. Maybe even a little understanding. I may be sidelined today but I won't be tomorrow (hopefully).

Ugh, I'm Fat

When my mom died, I lost about 15 lbs. I wasn't really eating (being nauseous 'round the clock will do that to you). I wasn't really sleeping. My remaining parents were all worried about me. Then, four months later, my Gram died (maternal grandmother). Needless to say, it was devastating.

I regained my appetite but was diagnosed with dysautonomia so closely to my Gram's death, that the medicine I was put on seemed to make me less hungry. My cardiologist put me on midodrine. My gastroenterologist put me on carafate to help my two ulcers (I lovingly named them after the company I work for). The carafate made me so ill that my acid reflux went out of control (more so than it already was). I called up my gastro doc and asked him to put me on something else. He prescribed elavil - which is an anti-depressant that helps reset the nervous system. Within two days it started helping me.

There's one really bad side effect to midodrine and elavil that no one really tells you about: YOU GET FAT! I mean like gain 20lbs in a month kind of fat. It's awful. I hope my Aunt Esther sees this so she can know that I am not fat because I eat pie all the time. In fact, if I eat at all, it's usually healthy food. And I run. And I work out. But I keep gaining weight.

So, this all kinda sucks. First I get to be sick all the time. Then I get to be fat on top of feeling sick.

Lord help me.

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 started this blog because I needed an outlet. I used to do A LOT of writing. A lot. And I stopped once I moved back to the USA. Why? I didn't have a lot to say. But now I do.

Last year, after a rough bout of the Norovirus, I started feeling sick. My symptoms were (and still are):

• nausea
• dizziness
• fainting spells
• lack of appetite
• joint pain
• ...and a lot more

It was scary. I was told I had everything from a bad gallbladder to labrynthitis. Some doctors told me it was in my head. Others told me they had no idea what was wrong. I was also told it was anxiety.

Then, one day, my mom died. She had lung cancer and her time just ran out. It was rather sudden but as she was living her last days, my symptoms got worse. My dad came in for moral support and happened to see a site called crowdmed.com - it's a site that crowd sources medical issues. This site saved my life. The best recommendation was something I never heard of: dysautonomia.

After approaching my primary care physician and my neurologist - neither of them thought this could be something worth exploring but they sent me to a cardiologist. After wearing a heart monitor for two weeks, going for an EKG, and a tilt table test, I was told I DON'T have postural orthostatic tachycardia syndrome but I do have dysautonomia...and orthostatic hypotension... and sinus tachycardia. Essentially two things are happening to my body:

1. My nervous system is fried. I totally fried my nervous system and my brain is sending mixed signals throughout my body and it's causing soooo many issues. 
2. My blood pressure takes a dump whenever I stand after laying down and blood pools in my legs if I stand for too long.

This sucks. Throughout this blog, I'll be documenting how I feel. Today, I'm recovering from a cold. Normally, for most people, a cold is nothing big. For me, it basically knocks me on my ass - leaving me nauseous, dizzy, exhausted (not just tired), and all around crabby. 

So, that's the beginning of how this whole thing started. Welcome to my life.