And I'm Back!

 Well, it's been a hot minute...technically I haven't updated since 2018 so here's what's been going on...

Yes, I'm still sick. While it's part of my daily life, it's not running my life any more. It probably played an active role in me losing my job in March 2019, though. You see, I had a boss who was horrific. She lived in LA and I live in Detroit, so she had a hard time managing someone who she didn't see every day. She had choices - we could have done video meetings daily but it was her choice to not be bothered with it. So, instead, she hated me for the life she thought I had.

Imagine that, someone hated me for the life they made up for me in their own head! It's crazy and also incredibly stupid. She saw the surface: marriage, kids, career. It was what she wanted but couldn't have. She didn't see how miserable I was. Nor did she see how sick I really was.

So, in March 2019, I was laid off from my "cushy" career in advertising. I wasn't alone - 4 other people were laid off, too. I was the only one given the option to come back in and say goodbye. The funniest part of it all was the fact that my boss' boss left this to the last minute and I was already at home with my kids. HR had to call my cell phone and inform me of my job loss. 

I mourned for 3 weeks - it's OK to mourn over the loss of your job. Then I started my own company: Ellie & Jojo Communications. I created a marketing company and named it after my mom and stepmom. It was the best decision I made that year. And it struggled until a year into COVID. 

COVID happened but I'm going to skip over that part, for now. 

I spent a few years coaching soccer, too. If you told me in 2016 that I would coach kids soccer, I would have told you that you are NUTS because there's no way I could do that. But I did. I did it. I loved it, too! My youngest is 9 now, and he still plays soccer on a great team with a wonderful coach. I'm still active in the soccer association, too. As it would happen, one of my bosses from the job I was let go from was also active in the league and reached out to see if I wanted to be on the board. 

I LOVED that boss - he was great...so I said YES! 

The PTA is a big part of my life, too. I'm still the President of the PTA at the kids' school. I'm on the board of the Council PTSA, too. 

Life isn't always sunshine and rainbows but, for my mental health, I'm back to blogging.

World Mental Health Day

If you read the title of today's post, you probably guessed that today is World Mental Health Day! So, let's talk a bit about mental health.

Sounds scary, right? Well, it shouldn't be. 

Raise your hand if you've ever said or heard someone say "that person is mental!" or "because s/he's crazy." Well, you can act like a loon but it's pretty hard to be "mental". We need to start using our words a little bit more cautiously and with better intention. 

Really, though, we need to do less talking and more acting on mental health issues because the concept of mental health encompasses a wide range of disorders, diseases, and conditions. According to the WHO (as in the World Health Organization, not the band) things like stress and anxiety can lead to mental illnesses if left untreated. 

THAT is a scary thought. 

So, what constitutes something under the "Mental Health" bucket? Well, it's a long laundry list and I'll do my best to include some you may have heard about and some you may not know about:

• anxiety
• depression
• bipolar disorder
• schizophrenia
• autism spectrum disorder
• sensory processing disorder
• ADD/ADHD
• dementia
• epilepsy
• migraine/headache disorders
• eating disorders
• mood disorders
• impulse control/addidction
• OCD
• PTSD
• tic disorders 
• ...and SO many more!

I didn't experience anxiety until I got sick with dysautonomia. I was concerned about a lot of things: job loss, divorce, inability to take care of my kids, and death. Ok, "concerned" isn't really the right word. The idea that this disorder could make me feel worse than it did and result in any of the issues I mentioned created so much anxiety that it fed into my pre-existing depression. It didn't help that every doctor thought I had anxiety before diagnosing me with dysautonomia. There's no better way to make a calm patient anxious than to tell them it's all in their head.

Anxiety and depression are very common mental illnesses for people with chronic illnesses. Many times when we admit we're anxious or depressed to our doctors, we're put on more medication. Sometimes medication is 100% necessary to treat the symptoms of of the mental illness itself. But that's not always the case. I had to work through my issues without medication. And I'm still working through them. When life hands you rotten lemons, no one wants that lemonade. 

So, what can you do? Finding help for mental illness doesn't need to be hard, even though it may feel like the hardest thing in the world. Talk to your doctor to help understand what your first step should be. You can also help others experiencing mental distress by talking to your loved ones and friends - that's really the first step. They may shut you out but keep trying. And a simple Google search will lead you understanding the symptoms of mental illness. 

Have questions? Follow up with your doctor, a friend, or a mental health professional - they are your first line of defense in getting help.  

The October Slide

I find it fitting that October is Dysautonomia Awareness Month because it's the same timeframe as the season changing over. For most people, the change from summer to autumn is beautiful. For many in the chronic community, it wreaks havoc on our bodies.

Ever heard of the October Slide?

No, it's not the latest dance craze (which I cannot keep up with these days), it's what we call our health challenges during seasonal changes. It's a fairly well-documented occurrence. When diagnosed with POTS or other forms of dysautonomia, many physicians warn patients that this is something to be on the lookout for when the seasons change. It's also talked about to death within our community but we also like to share those stories of change with you, dear readers. Sadly, the October Slide continues into the November Drag.

So, what exactly is the October Slide? In short, it's when your daily symptoms worsen due to seasonal change. Our bodies are more susceptible to barometric changes (which happens frequently in the midwest), rapid and drastic weather changes (also frequently happens in the midwest), mold growth, and so much more.

What does the October Slide do to Hillary's body? In the past, I would pass out more, my nausea would grow out of control (rendering me unable to eat), and I'd get dizzy more often. Now? Lots of migraines, sinus pressure, brain fog, and nausea (still).

What makes the October Slide worse? Undoubtedly, stress makes any of our symptoms worse and I'm under a ton of that right now. We put a lot of pressure on ourselves to try to perform like we're healthy and we're not...we're really not like other people. Maybe we're superheroes! Anyway, stress definitely makes the October Slide worse. Food can also make it worse, we tend to eat what sounds good instead of a balanced diet because sometimes that balance isn't a good mix for patients like us. We become more sensitive to foods because our bodies are on high alert.

What can I do to support you? Be there. Be present. Ask if you can bring food over. Bring us books. Watch movies with us. Watch our kids for a few hours. Bring your kids over to play with our kids. Whatever you do - don't judge. Don't make the stress worse. Many of us are already missing out on every day life things like being an office, playing with our kids, and even being intimate. Don't make it worse. There are also some things you shouldn't say, so please watch your mouth around us.

The best thing you can do as a friend, spouse, partner, or relative is just to call or text to see how we're feeling. It'll raise our spirits and help bring us out of the October Slide...mentally.

Dysautonomia Awareness Month

If you're an avid follower of this blog, you'll know that I have dysautonomia and it's likely not going away any time soon. Some days are better than others and some days all I want to do is stay in bed and sleep because my body tells me that's what I need. I almost never get to do that, though.

Well, October is Dysautonomia Awareness Month - it's also Breast Cancer Awareness month. Both diseases are wretched but one gets more coverage and publicity than the other. So, this month, I'd like to give you - dear reader - some insight into how you can help people you love who probably feel a lot like me. Today, we're going to talk about ways to help in some very blunt language that I will not apologize for.

Ways to Help

• Since dysautonomia patients are awful at telling people what we need (mostly because we often don't know), just show up. Tell us you're coming to hang out. Be present with us.
• Offer to babysit or bring in dinner - while we may have some dietary restrictions, we'll tell you exactly what to get and what not to get. Just the idea of having someone help out is amazing.
• Let us vent because having this disorder SUCKS and we often bottle up our pain and emotions because we believe no one wants to hear just how bad it is.
• If you offer help and we take you up on it please own up to it. Don't offer if you're not going to actually do anything. Sometimes we need someone to run to the pharmacy just to pick up our medication or we need a few extra bottles of Gatorade. So, if you're going to offer help, own it.
• Treat us like humans, not patients. We get enough shit (pardon my French) from our doctors and the society around us, we don't need it from you, too. Be supportive while treating us like human beings. We are not our illness. We have SO much stress weighing us down that we don't need to hear your comments about how we don't look sick or how if we just moved a little bit more, we'd feel much better. Do. Not. Do. That. If we look fine, it doesn't mean we're not sick. It means we used up a lot of energy to fake it until we make it.
• Help us relieve stress within our limits but don't try to sell us on anything like oils or diet pills. Our bodies suck - we don't need to add anything into that and the stuff you sell may not be doctor-approved. This condition is also costly, please don't try to make a buck off of us - if we want what you're selling, we'll ask you for it.
• BUT if you see a gadget or something that may help us, feel free to buy it for us and add it into our collection. We're not asking for Fitbits (well, maybe some are) but cooling pads, peppermint oil, and even some As Seen on TV products may be helpful and we'll really appreciate it. They go further than flowers.
• Donate to help us find a cure or even just better treatment plans. Research is expensive and we don't get the funding that other disorders get - every dollar helps.

Stay tuned for our next installment: What Not to Do/Things That Are Not Helpful

Less Pressure-Filled Mother's Day

My bat mitzvah - 1994.

I hate mother's day. There. I wrote it out. Now you know. Do you know why I hate mother's day?? Because my mom isn't around for me to celebrate her. I also hate it because none of my grandmothers are around for it, either. And I hate it because it's filled with false expectations.

Growing up, I don't actually remember what we did for mother's day - I may have blocked it out. But after my parent's divorce, my mom and I would go to Greektown in Detroit for the art fair as well as the food. That's when I really started remembering mother's day.

When my parents remarried my amazing step-parents, mother's day took on a new twist: morning brunch with mom's family; and bbq dinner with my stepmom and family. As much as you might think I hated that - I actually really liked it. I really enjoyed getting the family together to honor our matriarchs.

My mom & her chemo hair.

As I got older, people in the family made it seem like mother's day was a chore. The last decent mother's day that I can remember was the one before my mom passed away when my kids were still small and my mom was recovering from chemo and radiation. She sucked it up to be with us at my house and tried to enjoy it as much as she could. The next year, we had lunch with my aunt and uncle, before cleaning out my grandmother's apartment.

I learned a lot from my mom - mostly the sucking it up and doing what's expected part of life. The first mother's day after mom was gone was hard but not even the hardest one. For the last few years, I refused to go to the cemetery on mother's day because it's too hard. And there's too much pressure. Mother's day is filled with too much pressure. And emotions. I'm a cryer - so I don't really enjoy spending a day that's supposed to be about celebrating moms crying about those who passed on.

Oh, the '80s.

This year, though, I'll go to the cemetery. This year seems harder than most. I can't look at mother's day cards and not cry this year. We're not doing anything with my family to celebrate mothers, so I'll go to the cemetery to say hi to my mom - get my emotions out right then and there, so I can be present and at home with my kids. I want to garden this year (weather permitting). I want to spend time with my kids doing anything they want to do and anything that's a distraction. I also want to spend the day showering my husband with amazing things because it's his birthday. This Sunday should be filled with happy things and giggles, not sadness and tears.

It also needs to be less-pressure filled! Holy moly! Why do we put so much pressure on ourselves to have the PERFECT day?!? Let's take that pressure off and just not care. That's my aim. As much as I hate mother's day, I still want to be celebrated because being a mom is the HARDEST job I've ever had and even though I make a ton of mistakes, I'm fairly proud of the two little guys who seem to just love life and me. So, this year is going to be a no-pressure mother's day. If I cry, I cry. If I smile, I smile. And maybe this year I won't hate mother's day as much as I usually do. Afterall, I still have two beautiful step-moms to shower with love and some amazing aunts that have helped fill-in where my mom can't anymore. I'm grateful. Still crying, but also grateful.

What is Brain Fog?

He doesn't have brain fog - he's just tired.

It's been a hot minute since our last touch-base - my apologies friends! Let's just say life is moving at the speed of light and I'm just trying to keep up.

I'm always trying to keep up.

Last week, my hubby was out of town for work and dysautonomia reared it's lovely head in the WORST possible way. I had a major flare-up.

My flares, for those of you not super familiar, can include:

• migraines that last for days 
• super nausea
• lack of appetite
• heart rate stuck in "exercise" mode
• brain fog

Those are just some of the issues I dealt with last week. But I want to focus on one BIG one that's still plaguing me and I get a lot of questions about it: 

Brain Fog 

Brain fog can also be caused brain fatigue and it's essentially an episode of mental confusion. It can strike without warning and causes confusion, lack of focus, and poor memory recall. It can be caused by:

• lack of sleep
• menopause
• stress
• side effects of medication
• nutritional deficiencies
• diabetes
• neurological conditions

For me, it's usually lack of sleep, stress, neurological condition (dysautonomia), and sometimes the side effects of medication. Brain fog is a b*tch. Many people, including me, say it can feel like someone slugged you in the head (pressure), then put pantyhose over your face (visual disturbances). This makes people feel slow and can make even the easiest task (like sitting upright) feel daunting. 

At one point last week, I consumed so much caffeine in a failed attempt to "snap out of it" that I thought I wasn't going to be able to sleep ... but I wasn't awake enough to do something like start folding my laundry.

There are a few things you can do to stave off brain fog:

• eat a balanced diet
• reduce stress
• increase your antioxidant intake

For patients, like me, with chronic migraines, dysautonomia, sinus tachycardia, and orthostatic hypotension (have I collected enough conditions yet? What do I win??) - those things don't always work so we ride it out. I ride it out by working at home and taking my time to be away from other things that could distract me (like my office) or make me agitated (like other people). I learned that with brain fog, I can't drive far - so longer drives are out of the picture, and I get tired more easily. It also makes me more prone to migraines. 

Does any of this sound familiar to you? Consult your family physician to find ways to combat brain fog ... then let me know what your doctor recommended.

Until next time...

The Power of Moms

What my brain feels like after a rough day. Dog = rough day.

Last night, I posted something rather vague on Facebook. For the last few weeks, my world is very upside down and erratic! So, my post last night was a reflection of that. Everyone has their own version of what hell is - and I don't mean after-life hell, I mean hell on earth. For me, hell on earth is knowing there's an issue with one of my kids and have absolutely no clue as to how to help my child.

Let me backtrack.

If you're a reader of the blog, you know our oldest has Sensory Processing Disorder. His development is behind and when something developmental is going on, he regresses in one way or another. Lately, as he's finding his own voice, he's refusing to listen in class and also refusing to participate in activities at school.

I can understand how hard it is to live in his body. Working in an open office environment is enough to send my system into overdrive. But truly imagine what it's like to live in his body.

Closer your eyes and imagine someone's playing music loudly, another person burned their popcorn, you've been sitting for too long so your legs and tush hurt, a few people near you are talking loudly, the TV is also on, you have to go to the bathroom, and two people just came to your desk to have an in-depth conversation.

Does that sound productive? While you're trying to listen to the two people talking to you, you're trying to block out the pain, the urge to use the restroom, all the noise, and the gross smell of burnt popcorn. It's a lot of work! Now add on that one of those people is using fluffy words and not getting to the point fast enough. You're desperately trying hard to follow but the way you're receiving the information is skewed and confusing.

This is what my oldest deals with on a daily basis. By the time it's ready to clean up and head to lunch, he's depleted his energy and is a complete mess. Usually, he's a mess before that.

So, my vague post on Facebook came from a place of frustration. And the women in my life surrounded me in light and tried to lift me up. It's very hard to admit you have no clue what you're doing but it's nice to have others say "I know the feeling" or "You got this!"

We often tell people "if you ever need anything, let me know - I'm here for you!" but it's so hard to actually say "I need you but I have no idea what I actually need". Sometimes people just need to show up with coffee and ask "what's going on? Tell me everything!"It goes further than saying "let me know when you need me". But I felt the love last night.

I am truly outside of my comfort zone right now. It's very hard to juggle work and family. Kids have schedules and sometimes work gets in the way of that - which isn't fair to them. I have to juggle kids, work, home life, OT appointments, sensory diets, and then my own health.

Work is a struggle right now. If I'm being completely honest, it feels like I'm being pushed out by people who don't fully understand what I do. My schedule is erratic and hectic - which isn't helpful for a work-life balance. There's guilt that gets thrown when you can't make it to a meeting because your kids have lives, too, and they are entitled to have theater activities, sporting events, and private therapies that help them function.

And at the very end of the day, when everyone's asleep, you might find a few moments for your spouse. But what's left for you? There are days where my body just quits on me from all the stress. It can only take so much. But at least I know I have the power of moms behind me and many of them know what I'm going through because they go through it, too. Mamas - I salute you. Our jobs aren't easy but we should all have each others backs. Thank you for having mine.