My Husband Now Has a Crazy Rare Disease

Blog Mom Life September 23, 2015

The last time I worked a full day was August 28.

The following Monday, I logged a couple hours, sharing the Boca Raton Observer feature with my email subscribers, and responding to emails, in between checking on my honey, who was in bed, having stayed home sick from work, looking and feeling awful.

It came on Saturday night, and it came on hard.  We were hoping after resting up Monday, he’d be back in shape for work Tuesday.

After all, this is a man who rarely gets sick, and when he does, he still powers through and does his job.

But instead of getting better and heading back to work Tuesday, Sacha got worse.

Over the next 3 days, we went to urgent care, our primary care doc, the Cleveland Clinic walk-in clinic, back to our primary care – and everyone said the same thing:  it’s viral, like the flu, and he needed to let it run its course.

In the meantime, he was missing work during an incredibly active litigation (he’s an attorney), and I was shut down, rescheduling client appointments and other commitments, and falling way behind on emails and requests for my time and attention, as I shuttled him around to doctors and cared for him at home, while doing my best to keep Jay’s life as normal as possible while Daddy lay sick in bed day after day.

Then, on Labor Day, nine days after his symptoms started, after already having missed an entire week of work, Jay (our 7 year-old) and I came home from a BBQ to find Sacha shivering with a fever of 104.8.


That’s when I took him to the ER.  He was promptly admitted.

When people say how important it is to have an advocate when you’re in the hospital, believe it.  The next few days were critical – we needed to get a handle on this fever and other uncomfortable symptoms, and get him on the road to recovery.  This was not an easy feat, as we were met with unnecessary obstacles: obstacles that required significant advocacy on my part (and others’) to overcome.

I am happy to report that after 5 nights in the hospital, Sacha was discharged the following Saturday, and even made a brief appearance at our dear friend’s 50th birthday celebration that night.

Each day he gets better and better, and since we now know what we’re dealing with, he’s on the right medication.

He has been diagnosed with a very rare auto-immune disease called Adult Onset Still’s Disease.

It’s so rare that it wasn’t even listed in the hospital’s database of diseases.  Sacha’s always been quite unique, so leave it to him to get something no one’s ever heard of…

It’s something he’ll have forever, but we are hopeful we won’t have to endure another episode like this one.  And if it does attack again, we know what to look for.

In typical when-it-rains-it-pours fashion, just as Sacha was feeling well enough to start his transition back into normal life, our little guy came down with an awful sinus infection, running high fevers and staying home day after day so sick.

He is finally back at school today for the first time since Sacha was discharged a week and a half ago.

Needless to say, this mama is SPENT.

Keeping up with friends, sharing updates on social media, returning calls – it was all way too much while we were in the thick of it.

So now that things are leveling out, I wanted to sit down and fill you in on what’s been going on.

Also, I wanted to share some major lessons I’ve learned or have been reminded of over the last few weeks:

1.  Never let a loved one be in a hospital without an advocate checking in and keeping tabs on everything.

Without my seriously going to bat last week, Sacha would have been discharged after a week having made no progress on a diagnosis or treatment.

It’s a long story, and one that led me to have a meeting with the Director of Medical Affairs at the hospital this week, with more follow up on the way with other involved parties, but suffice it to say, his care left much to be desired, to put it kindly.

Advocating for him was a full-time gig.

If you’ve got a loved one who is sick or in the hospital, treat their care like it’s your Business.  Be the CEO and take care of business.  Like their health depends on it.  Because it does.

2.  If you have a friend who is suffering/grieving/going through a hard time, and you don’t know what to say, let them know you care.  Even if you don’t have the right words.

Text messages from friends letting me know they were thinking about us and were happy to pitch in – from picking Jay up from school to shopping for groceries – even just to say they hope he’s feeling better – those went a long way.

Don’t be afraid that you’re bothering someone by expressing that you’re thinking of them.  It gave me comfort to get those messages, even if I couldn’t respond to each one individually.  Thank you for those, you know who you are.

3.  If you’re suffering from tremendous stress, be proactive and take measures to reduce stress in your life.

Auto-immune diseases are triggered by infection and/or extreme stress.

We’ll never know whether Sacha had an infection (we couldn’t pinpoint one in all of the tests), but we know he’s been under tremendous stress at work.  No case, client, boss, or deal is more important than your health.

Take your down-time, your play-time, your family-time seriously.  Use your vacation days.  LIVE your life.

4.  The body never lies.

When your body is out of whack, it’s trying to tell you something.

Be aware.  Listen to it.

Honor its need for oxygen.  For movement.

Pay attention to what it’s showing you.  If you have a rash, take a picture of it.  You may need to compare that picture to a diagnostic photo later.  Or share that picture with a doctor.

If you’re getting fevers, pay attention to when they come on.  Track them.

When you have symptoms, journal them.

The more accurately you’re able to describe and characterize your symptoms, the easier you make it for medical professionals to pinpoint what’s going on with you.

5.  It takes a village.

I never would have survived the last 3 weeks without love and support from friends and family.

But in particular, without the incredible support of my mom and stepdad.  From coming to the hospital each day, to picking Jay up from school, feeding him, taking him to basketball practice, doing lots of sleepovers, bringing us edible food, walking our dog.  You name it.

With smiles on their faces, never waiting to be asked.

Real-life heroes, and I’m so beyond grateful.


Sacha is doing better each day.  He has his moments where he feels great, and moments where he feels weak.

He’s lost 17 pounds, not quite the way I would have liked him to, but he’s happy the pounds are gone.

Yesterday, he came out of the shower saying that perhaps this is the best thing that could have happened to him.

He’s eating super healthy, making sure to remain physically active to keep his joints moving, and he’s crying at commercials.

Perhaps it’s a side effect of the steroids, or perhaps he’s just letting his softer side loose.

Either way, it’s fine by me.

We’ve been through a lot these last few weeks, but our little Boegem family has come through stronger, tighter, and even more committed to living lives we love.

In health, gratitude and love,


p.s.  Since I was shut down over the last 3 weeks, I did nothing to market my upcoming (and final) Clarity + Action Mastermind of 2015, which means I still have 4 open spots.  Since we kick off THIS MONDAY (9/28), that means I’ve gotta fill this program STAT.

So, I’m doing something crazy.

I really don’t want to cancel this round as I already have participants registered, and I’m soooo ready to get back to work, so I’m offering enrollment at only 60% of the program fee.

I’ve never done anything like this before, and don’t plan to do it again, so if you want in at a crazy low price, grab your spot.

All the details are here.

To get the crazy low price, register by 11:59 PM Saturday night (9/26).

*** The full price is still listed on the Registration Page, but when you click and actually register, you’ll see the Paypal checkout page is updated with the discounted price. ***

If you’re in South Florida and want to make serious headway in your business this month, it’d be my honor to work together to make it happen.

Get all the details here.

Like what Stacy’s got to say?

Sign up to get updates!

Let’s chat. Leave your comments here!

Your email address will not be published. Required fields are marked *