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 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):

nauseadizzinessfainting spellslack of appetitejoint 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 - it's a site that crowd sources medical issues. This site sav…

No Relief for Migraines

Sometimes life hands you lemons and you can make lemonade. Sometimes life hands you lemons and you cry because your head hurts so much that you don't know what to do with those lemons.

I'm the latter over the last few weeks.

I still have some good days where I feel AMAZING and then I have some really awful days, like today, where I wonder what I was thinking coming into work when I feel so awful.

But I like to show my coworkers that I'm strong enough to be here.

Last week, I was not. I went to bed with a migraine and woke up with what felt like a tornado swirling in my head. The meds I took before I went to bed didn't work. But I still tried to go to work...until I got sick on the side of the road and went back home.

Migraines like this are horrific. It's the only way I can describe it. I've come to understand that some people, who may only get migraines occasionally, need to rest because their heads hurt in such a way that movement makes them ill. I'm rar…

Grateful for Insurance

This morning, my friend Sarah asked "what are you grateful for?" My answer:
"My current healthcare where I cannot get kicked off my insurance because my body fails me. I'm having a bad flare up that came out of no where and it's making me think back to when I wasn't allowed affordable health insurance - even through an employer."

You see, there was a time not too long ago when I was denied health insurance.

Let's backtrack: I was 22 when I was diagnosed with interstitial cystitis (IC). Like dysautonomia, there were doctors who didn't believe IC was a real disorder or disease. At the time I was getting tested until the time I was diagnosed, I had insurance. By the time I had a diagnosis, my insurance told me this was a pre-existing condition that I didn't disclose and I was kicked off my insurance. None of my bills were paid.

I was 22. I didn't know how to navigate the red tape and the bureaucratic system. I felt so lost. How could I get k…

Bonuses When You Feel Down

Having this disorder sucks most of the time but I'm of the belief that I need to be positive about it. One day, I will be healthy. I will have good days. I will keep my life as normal as possible.

But when I'm having off days where I feel yucky, I get excited for little bonuses. A few days ago, I received my VoxBox in the mail and it was such a picker-upper. I like getting to try new products, especially when I get to give an honest opinion in return.

So, I got my VoxBox for free from Influenster and I dove right in. Sometimes I have a hard time not ripping open the box so I can take pictures. This time, the kids reminded me to take pictures, first. The pics are not pretty.

Here's what I got:
SkinnyPop Microwavable PopcornProbiotic GummiesSay Yes To... facial maskCoconut milk shampoo and conditionerAlways pads (which are always useful)and a coupon for free yogurt
So far, I've tried the popcorn, probiotic gummies, the pads, and the hair care products.
Here are my honest …

Trying to Conceive

So sorry for not writing more. Life has been...busy.

Fair warning - this is going to be an emotional post.

Getting pregnant is a scientific miracle. There's  a scientific reason for how it happens but, for me, it's like finding a needle in a haystack - which makes it a miracle.

Before hubs and I got married, I was told that it was going to take me a long time to get pregnant so I should start before getting married. Mind you, I was living in Israel and my OB/GYN was relatively conservative and religious. But he wasn't dumb. We weren't really trying but we weren't "not" trying, either. I miscarried a few months before my wedding. I told no one - not even hubs.

The next time I miscarried was right after our honeymoon and hubs was in Miluim (reserve duty in the Israeli Defense Forces). Again, I told no one. I was already freaking out that my husband was playing with landmines for a few weeks - I didn't want to deal with people's sympathies.

The thir…

My Daily Life is a Roller Coaster

Have you seen this video? You should. Go ahead. I'll wait.

The video shows a young woman, like me, going through her daily life and talking about it as the roller coast it is.

Some days are great. Some days are not. And the days that just suck don't just suck - they are horrific.

Last week and this weekend I started breaking out in hives for no reason. The doctors think I have Mast Cell Activation Disorder (MCAD) where my body has a histemic reaction for no particular reason - resulting in hives, red spots, and rashes (in my case); in extreme cases it causes anaphylaxis.

Sounds fun, right? By the time I got into work yesterday I couldn't stop itching and scratched the shit out of my shoulder.

When I got home, I had little energy left to do much except take a bath and go to bed. Then I could barely sleep.

Are we having fun yet?

On good days, I can play with my kids, clean the house, cook as much food as I want to, and even meditate. On bad days, I will struggle to get out …

When Germs Appear

That pretty much sums it up right now. Fuck. I'm sick. Granted, I caught a cold. It's not as bad as the man flu but it sucks.

When you have dysautonomia and you catch a bug, it's vile. No, worse than vile. What's worse than vile. Horrid? I'm not sure but it really sucks.

Here's what happens: your body goes berserk. Seriously, it has no idea what to do. So I get more severe headaches, nausea, bloating, stiff muscles and joints, and the normal leaky nose. Coughing gets worse and your breathing becomes labored. Sounds fun, right?!?

It's not.

Right now I'm just waiting to see if this morning's eggs make a second appearance.

So, when germs appear in other people, we prefer those people stay home when they can. I'm lucky, I work at a place where people can stay home and work remotely. Do they? No! And it's fucking annoying.

At the office, my desk drawers look like a mix of what you'd find at Whole Foods and CVS. I have four different kinds of…

Grieving with Dysautonomia

When a loved one dies, it's natural to grieve and grief comes in many forms. It's different for all people.

Two years ago, I lost my mom. Two years ago, last, we buried here. Yesterday was her Yahrtzeit (Jewish anniversary of her death). The hurt is still there. The grief is still there but it gets shoved away so I can resume normal everyday activities.

Until the anniversary comes. Then the grief is like an open wound that won't heal.

When my mom got sick, I was just starting my journey with this disorder. By the time she died, I had no idea what it was but it was consuming my every day life. When she was in the hospital, I would get hit with waves of nausea - like normal. But the day she died, I had a migraine that wouldn't quit, nausea that was so debilitating I still have no idea how I was present that day, and the overall "icky" sick feeling that dysautonomia brings. The grief was there and it was manifesting itself into the WORST symptoms I've ever …