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SADS, POTS, MTHFR…and other hilarious acronyms

April 12, 2017

Wow. Did you see when I posted last?

I think it’s been over a year. Maybe two.

That’s pretty embarrassing and, at the same time, slightly impressive that I have been that neglectful.

A lot has changed in the past couple years, and I’ll tell you why in a moment (hint: it has everything to do with all the acronyms in the title + a million cross country moves).

Here’s what you missed:

  1. I started image consulting and public speaking, which took up so much time, that I ended up leaving my fashion design job. Check out my new business here.
  2. I’ve created some pretty cool e-courses about fashion and personal branding that you can find here.
  3. I’ve also written a book or two.
  4. Two or three moves later, I now live in Arizona. Never saw that happening in my life.

So, as you can imagine, I didn’t have oodles of time to muse about stuff when I was conquering the consulting world while simultaneously dying.

Okay, I wasn’t really dying. But I was sleeping for about 14-16 hours a day, which is pretty much like reaping all the benefits of death without the commitment.

It wasn’t until I moved to Arizona, that I finally found a doctor who confirmed the following:

  1. “There is no doubt that you have Chronic Fatigue Syndrome (CFS)” -my doctor.
  2. I have Postural Tachcardia Syndrome (POTS)- which means my heartbeat and blood pressure don’t have great communication skills, so when I do things like stand up, I pass out. (woohoo!)
  3. I am compound heterzygous for a MTHFR genetic mutation- which means my body doesn’t process folate and, therefore, I have access histamine in my body (which leads to 24/7 allergic symptoms).

It’s nice to be able to put a name to an ailment, even if it’s a weird one. I mean, MTHFR? Come on! (Side note- I also tested positive for coxsackie enterovirus antibodies and was diagnosed with SADS (seasonal affectional disorder) several years ago….so how’s that for another hilarious name).

In the meantime, you could say I’ve been a little tired. I was able to trace my symptoms back all the way to high school, which means I’ve been operating at half speed pretty much most my life.

Chronic fatigue is a weird thing to explain. Essentially, you constantly feel like you just finished running a half marathon (also ran two of those while I was not here blogging) no matter what you actually did.

Before my official diagnosis, I would always tell myself things like this:

  • You can’t be tired. You just slept for 12 hours. Now you’re just being lazy.
  • Suck it up, you’ve got stuff to do today
  • Everyone else can do this stuff, so you can too (‘stuff’ being everything from running a business to literally running a half marathon)
  • You can sleep tomorrow

Since I’m fairly ambitious, I would work my butt off during the week (and wear myself down) and then sleep all weekend to recover. Not really a great option, but it seemed to have worked for about a decade.

I’m not sure if it is age setting in, the altitude in my new location, or a combination of both, but I finally crashed when we moved to Arizona. My body was in full #nope mode and I knew I needed professional medical help.

Luckily, I was able to find a fantastic Chronic Fatigue doctor and, while I haven’t made a full recovery, I’m back to operating at the same sub-par level I’ve been at the past decade. Hopefully, as we test different medications and techniques, I will be able to get all my energy back.

Although, I have a blog with my consulting site, I still like the informality of my Bucky world, so I’m hoping to get a new post up at least every month (low standards are the key to success, amiright?)

Thanks for being patient with my absence and hold on to that patience as I start to redesign this blog to bring it up to date!

Cheers,

Leslie

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