The "Others"

I'm having a rough day and I think my brain fog is due to how hot it is outside. I know, you're thinking "Hillary - wtf! You used to live in the Middle East!" Truthfully, I love the heat but my body does not. It causes my symptoms to worsen. When that happens, I try to put out as much good energy as I can. I practice mindfulness, meditation (various forms), and gratitude. Right now, I need to shed some light on the "others". The "others" are people who take the time to check in on me (even just asking how I'm feeling when they see me) and those that actively take care of me (it takes a village, people!) - these people are my rock.

First, there's my husband. We're coming up on our fifth wedding anniversary. Does that mean I can get him the traditional gift of wood? Anyway, my husband is my rock. He keeps me centered while also making me crazy. He gives me time to rest when I need it and tries to keep it all together when I feel like my world is falling apart. I may not always show it but I love this man to pieces.

Next up: my parents. All three of them. With my mom being gone, it feels like the remaining three parents stepped-it-up and they often watch over me like a hawk. When I'm sick, at home, and I need soup because I can't drive - my dad comes through with soup and a deli sandwich (gotta get that salt!) and my stepmom makes soup ahead of time in case I need it and they aren't in town. My stepdad will often drive up to our house to see the kids and invite us over for dinner just so I don't have to cook. Every little bit helps.

Then comes my kids... oh those little faces. Their hugs do wonders for my soul. There are times where I'm bed-bound and unable to move. With an iPad in hand, my three-year-old will come sit with me in bed and watch his cartoons. If I'm on the couch, my two-year-old will climb up and lay next to me. I live for them.

My siblings are amazing - they are there when I need them and often help me navigate parenting. When I need a break, I'm usually given an option of dropping off my kids so someone else can watch them for a bit. My cousins are like that, too. We all live near each other - for the most part - so it's nice having other people around to hang out with the boys so I can rest and my husband can do yard work.

A lot of my coworkers know that I'm sick - some of them don't care but many of them do. Today, alone, I was told I look a little "green" and out of it. They let me babble on about how I feel and they check in on me when I'm at home. I'm grateful for their understanding because it takes away my anxiety when I'm home-bound and ill.

In reality, I have a lot to be grateful for and these "others" are just the start of the list. I'll follow up another day with more but, for now, let me just say: thank you.

The Week(s) from Hell

"Hello? G-d? Can you hear me?
Give my mom a break!"

Ever had a really bad day? The kind of day that makes you want to curl up into a ball and just cry. That bad. So bad your head is pounding and your heart is hurting. That. Bad.

Welcome to the last few weeks of my life.

While battling depression (thanks, dysautonomia!) I'm faced with some obstacles in my path. They aren't just obstacles you can easily walk over. They are boulders. That won't move. They are mutherfrickn' big massive boulders that won't budge. They are the things that happen in your life where you can only control how you react but you can't control these boulders.

And they mess with me.

I'm working longer and harder at work. I'm drained by the time I get home and ill by the time I get in bed. I sleep (kinda), wake up, and do it all over again. I feel like Bill Murray in Groundhog Day except I want to physically punch people on a daily basis. Strength is not actually punching people, by the way.

What a mess! I'm a mess. I have stuff going on in my personal life that is scaring the bejezus out of me and then I have stuff going on at work that's compounding my personal life. Something's gotta give. When will the universe just give me a break?!?

Anyway, I know life gets rough. It's not always a bowl of cherries - shit happens. But does shit always have to happen so frequently in my house? Goodness. Stress is causing my health to deteriorate. I can feel it. I can feel my bones ache and my skin get hot. I sweat (think: buckets). I get nauseous. I also vomit (sorry if that was TMI). Based on the spoon theory, I use up my spoons on a daily basis by 1pm. I need a break.

Welcome to my weeks from hell. Next week is a new week that will be filled with more obstacles - the only thing I can control is how I react to them.

Anxiety + Symptoms = Chaos

How we look when I'm sick and tired.

One of my close family members is really sick. I won't go too far into detail because it's not my story to share - even though it definitely affects me. I'm sitting in a hospital right now - waiting in the post-op surgical waiting area. I'm waiting. Just waiting. It can take two hours for my loved one to regain consciousness. I'm nervous, worried, and anxious - so my symptoms are going INSANE. This has been going on since last night.

Last night I envisioned sitting here and waiting. Then my symptoms started going nuts. My nausea got worse. I was convinced I was going to barf. I couldn't calm my system down. My heart was racing. My blood pressure was really low. I was having what most people categorize as a panic attack but this is just what happens when my symptoms encounter anxiety.

So, for now I just sit and pray - anxiously awaiting word that I can go see how my loved one is doing. I'm contemplating. I'm meditating. I'm also working - just to keep my mind off of the question "what is it?" and the other question "what's the treatment for what ever this is?" I'm trying to keep my anxiety levels down so I don't become the center of attention and wind up in here on my own. It's not my show. I don't want to be the center of this.


Sit. Pray. Show gratitude. Sit. Pray. Show gratitude.

Don't throw up.

You're Doing Great!

Me with one of my besties, T, livin' it up in Israel
(before dysautonomia)

A few days ago, I spoke with a friend of mine (read: ex-boyfriend) who practices medicine in Israel. He started reading my blog and reached out to me to see how I'm doing. I was a) stunned because he read my blog; and b) shocked because he cared enough to reach out. As I went through my symptoms with him he reminded me that I'm lucky I received a diagnosis as quickly as I did (about a year) - for most people, it takes three or more years to get diagnosed. It's a diagnosis of elimination - it's not this or this, so let's see if it's this other thing.  It's my own private version of hell.  Tests. Exams. More tests. CT scans. Blood work. More blood work. More CT scans. More Exams.

At the end of our conversation, my friend said "you're doing great!" - he meant that I'm holding up well and using this blog as an outlet to educate and get my feelings out there. He's right, though. I AM doing great - so far on this journey, I've been my best advocate and I haven't killed anyone - so that's a start! But honestly, I know it could be so much worse. While walking into work today, I read a few updates to FB group I belong to: Dysautonomia Divas. Two women are in the hospital - one is fighting for her life. I read a statistic once that said 25% of people with dysautonomia die. Holy shit: 25%! That's a lot of people. That statistic didn't tell me how many of those people committed suicide vs. dying from dysautonomia-related complications. But still. 25%.

Yet, I'm not in the hospital (right now), my vitals are relatively stable. I may need to take a break and lay down for a bit when I get really exhausted but that's usually the extent of it. Well, aside from feeling sick, that's the extent of it. Either way, I am doing great - I'm doing well. I have my good days and my bad and I know it could be much worse.

The Sky is Falling

Electrolyte water. Gin Gins. iPad. Pictures of my Mom.
Everything I need to function when I feel ill.

When I was a kid, my Bubba (grandmother) used to read me the story of Henny Penny - ya know, the chicken who thought the sky was falling and the world was coming to an end. Well, this morning, I felt like the sky was falling. I woke up late. I test my blood pressure (BP) twice - both times it was insanely high (which is NOT normal for me, it's normally very very very low). I was sweating like a pig (schvitzing like a chazer if you know Yiddish). My hair was sopping wet - even after blowing it dry straight. I scared the crap out of my youngest child and then my husband and I started fighting.

Whew. That's a lot to happen before 6:30am.

I feel gross. My symptoms are crazy acid reflux (like the kind where the acid hits the back of your throat), really bad nausea, aches and pains, a headache (again), rapid heart beat, and I think I'm getting thrush in my mouth (gross!). Did I mention aches and pains? It feels like I got hit by a truck.

I slept from 8:30pm to 5:10am - I tossed, turned, and physically woke up twice. By the time I woke up this morning, I had it. I was done. I'm so over this dysautonomia. I hit my breaking point this morning where all I wanted to do was curl up into a ball and cry. Depression sucks. And, yes, I'm depressed. You'd be depressed too if you constantly felt like the sky was falling.

Indeed, I felt like the sky was falling this morning. I just wanted today to be over. But I got up and went to work anyway (mostly because I don't want to give them a reason to let me go). Going to work helps me most days. It gives me something else to focus on but it's really hard to focus on keywords and algorithms when you'd rather be laying down while still focusing on keywords and algorithms.

So, this is what it's like living in my body. You have good days and you have bad days. Today is a bad day. Today is a day where I really just wanted to give in and stay home. Today is a day where I may likely cry at my desk because the pain I'm feeling is so bad that it hurts like hell. Today, I feel like I'm living in hell. Maybe tomorrow will be better. 

Moving On...

Last week, I was a little freaked out over how this holiday weekend was going to go. When you have an invisible illness, it's hard to plan for a holiday. This weekend, we spent a fair amount of time by our pool - which is generally a "no-no" for people with dysautonomia since heat can make you feel really ill. I got lucky. My kids took extra long naps on Saturday (which gave me time to rest up before we went swimming) and they were relatively easy to deal with on Sunday. Friday was also fairly fantastic.

For years we'd go to my mom's house for a BBQ before going on the boat to watch the fireworks. Well, this year, I wasn't feeling up to the fireworks (my stomach was churning and I was so nauseous that all I wanted to do was lay down) but we still went to the family BBQ - which was awesome. My family loves to dote on my kids, so having other people hang out with them gave me a much needed rest. My oldest insisted on going barefoot in the grass (that's a new one for us) and sitting next to my uncle during dinner. My youngest pocketed other people's food while they weren't looking. It's a good thing he's cute.

So, this past weekend, I got really lucky. While, yes, I felt crummy, I moved past it - which I know many people in my position can't do. We have a hard time getting up and just moving much less moving on with life. I took this weekend one day at a time - even one hour at a time. The little guy had an awesome play date with a friend from preschool and we ended our weekend with some delicious steak at my dad's house. My parents are amazing cooks - so any chance I get to eat at their house, I jump on it. Plus, my kids were so wired from the seven-layer-cake that they wound up cuddled next to each other (WHAT?!?!) in the guest room while listening to the Michigan Marching Band. My oldest insisted he wanted to sleep at Bubbie and Zeidy's house while my youngest insisted on "drawing" (never give this kid a pen or a marker).

All-in-all, it was a good weekend. I'm tan (kind of), rested (sort of), and ready for this week. I am, in fact, moving on ...

Holidays are the BEST...and Worst

Pup #2 - Cecil Fielder

For someone with dysautonomia, holidays can be amazing and nerve wracking. We tend to eat what feels right in the situation, but we also can get really nauseous with the smell of food. Case in point, Hannukah. We eat a lot of food that isn't good for you: potato pancakes and donuts (or, as we call them levivot/latkes and sufganiyot). Normally, I LOVE the smell of potato pancakes cooking. During Hanukkah last year, it made me want to throw up. In fact, I did - I threw up at my sister's house during Shiva for our mom (sorry, Kim - I never told you). The smell was awful.

Well, this weekend is Fourth of July weekend - so, Happy Birthday, America! This holiday could either go really well OR really poorly. We're heading to my parent's house for a BBQ on Friday and then fireworks on the boat. I haven't been on a boat since getting sick. Anxiety sets in. I might throw up. I might get dizzy. I'll likely be nauseous. I'm pretty sure I'll turn green. FUN times, right? I may eat three hot dogs or I may not because I may just want to lay on the couch and sleep.

See how fun holidays can be for someone like me? The upside is I'll get to sleep in and hang out with my kids for three days. I love the ability to hang out with my kids - yes, I wrote "ability". Sometimes I have that ability - other days I do not. Let's hope I have that ability all weekend because my kids are hilarious. But, if I don't feel well, I'll just cuddle with my cuddle-pup, Cecil. He's the greatest dog cuddler and gets really annoyed when anyone else wants to cuddle with me. He keeps me occupied when I feel gross.

Anyway, this holiday, I only ask one thing of you - pray for those who are protecting your freedom and thank someone who fought for your freedom (ok, I know, that's two things).

Let's hope this is the BEST holiday.