My Invisible Illness

What happens when you have an illness that society and doctors know nothing about?

I have been sick for a very long time. I started doing physical therapy around the age of 11, had an IBS diagnosis at 14, and started losing my ability to walk at 17. At 19 I had my lower spine fused together, and although I was able to walk, the trauma of the major surgery activated my fibromyalgia. Not even 2 years later, the H1N1 vaccine triggered ME/CFS.

Typical day now spent in bed

ME/CFS. Those 5 letters took 47 physicians and 8 years to get me an official diagnosis. Eight years of doctor after doctor, test after test, wondering what was wrong with me. How is it possible in 2017 for this to still happen? How were my skin cancer and brain tumor easier to diagnose and treat than something called Chronic Fatigue Syndrome? During those years, unguided and stubborn, I thought I could control this illness. I thought wrong.

Piecing together my medical history over the years

This denial meant that I built my life around performing only the best parts of myself for other people. Scared to show what it really looked like when I crash. Normalizing the episodes of full body paralysis that were occurring daily. The only exception to this is my husband; he’s had a first row seat to this shit show since day 1. But it’s time to quit that shit. The painful self-care I am doing now is coming to terms with the fact that I am sick. Very sick. It’s time to make drastic changes to my life.

Before and after a typical trip for my full-time job

No more pretending. Years of putting on a healthy front have progressed my illness to being homebound, spending 90% of my day in bed. Every decision has to be weighed (should I shower today, or do a load of laundry?), and everything comes at a price. For years I had only been factoring in the short-term cost, unaware of the long-term damage. Now I’m trying to course-correct. I am taking a leave of absence from my full-time employment. I handed off all physical aspects of my LuLaRoe business to my sister. We hired help to clean the house, pick up the kids, make dinner, and put them to bed. Yes, putting true self-care first means I can no longer care for my own children.

Mastering the art of parenting from bed

So why keep up the false pretense for so long? I am clearly “type A.” I used to be a competitive gymnast. I am accomplishment driven. I have never let anything stand in my way. Well, Chronic Fatigue Syndrome comes with terrible stigma; its sufferers are widely viewed as lazy, deconditioned hypochondriacs. From May 12th (International ME/CFS Awareness Day) being made fun of on Last Week Tonight with John Oliver, to a recent UC Berkley student article which suggested Chronic Fatigue Syndrome as a jokey excuse to get out of finals. How would you feel if MS was used as an excuse not to walk to class? Or if Alzheimer’s was used as an excuse for being forgetful? Fear of this stigma is why I have chosen, again and again, to play the part of a healthy individual. I am now understanding first hand how much damage this has caused.

ME/CFS Disability Scale. In the last 1.5 years, I have gone from 80->30

Very few specialists exist, since ME/CFS is only covered in ~1/3 of medical schools. There is no cure. There isn’t a tried and true treatment plan. There isn’t a single on-label medication cleared by the FDA. The stigma is felt just as strongly in medical environments too; “You’re too young to be this sick,” “There’s no way you can have this many illnesses,” and “Please don’t come back, I can’t help you” are a sampling of things I’ve been told by doctors. This is harmful. I will readily admit that I do not write this illness on medical history forms when at the ER or seeing new doctors in fear of being dismissed. I spent 4 years completely unaware I had this illness, then waited another 4 years to become a patient of Dr. Klimas, one of the few ME/CFS experts. Access to proper medical care is a huge barrier for ME/CFS sufferers.

Severe lack of funding = minimal research and knowledge about this illness

This is a plea to help me and everyone else with this crippling disease. Spread the word. Share this knowledge. Help educate everyone, from friends to medical professionals. I have linked many different sources below. Please take a look and share: help those who are too sick to speak up and advocate for themselves!

I met Jennifer Brea at an Unrest viewing! Click here to find out more about this amazing film.

TED Talk – what happens when you have a disease doctors can’t diagnose

Unrest – award winning documentary on ME/CFS

International Consensus Criteria – Primer for Medical Professionals

CFS Roadmap for testing and treatment

Summary of Significant Findings in ME/CFS

#Bedfest virtual concert – my personal submission

#MEAction (Hosting a fundraiser for this organization on May 31st!)

Solve ME/CFS Initiative

Open Medicine Foundation

Overview of studies on Quality of Life Impact

Blogs:

Occupy M.E.

Holistic Myalgic Encephalomyelitis

Phoenix Rising

Health Rising

Impromptu Adeline Photo Shoot

Someone LOVES the camera!

While at the park in Houston, Isabelle and I had an impromptu photo shoot of her in her Adeline dress and leggings (and princess hair lol). She loves being photographed, and is quite photogenic! I may be a little biased, but I think Isabelle will love having these photos when she is older.

Adeline is such a cute girls dress, suitable in the small to the larger sizes! I carry this style in my LuLaRoe shop 😍

Facebook LuLaRoe VIP group
Direct Shopping Link (Shop the Roe)
Let me know if you have any questions!

Update

Since I’m woefully behind on posting, here’s an update 🙂

My ability to post every other week seems to have been severely challenged by life events in the past two months. Here’s the short list:

  • I spent half of January traveling for both work and personal (including driving to Texas since our flight was cancelled and we were too stubborn to let it ruin our time with our friends and their new baby)
  • So much time learning how to run my own business
  • Actually running my own business
  • I also work full-time for a fairly demanding job (my team is super short staffed – aka we are all working late into the night regularly)
  • More travel in February for both work and personal (post coming on that hopefully soon!)
  • After waiting 4 years I am finally seeing one of the top physicians for ME/CFS which has been steadily progressing since I got sick 8 years ago (this also means lots of tests and time spent working on my health)
  • I have two little kids, enough said on that one

Okay, so maybe not so much a short list as much as a long one, but you get the gist. Life is crazy around here and doesn’t show signs of slowing down any time soon!

So much LuLaRoe!

On the plus side, my LuLaRoe business is continuing to grow! Super exciting! Now I need to shift some focus on making these fun jewelry pieces to compliment all this LuLaRoe 😀

#SheMeansBusiness

New Year, New Wardrobe GIVEAWAY!

New Year, New You, New LuLaRoe Wardrobe!

I wanted to start off 2017 with a bang! LuLaRoe has changed my life, and I wanted to share the joy of LuLaRoe with an amazing giveaway. Let’s start the new year being confident and comfortable with ourselves, ready to tackle the new year head on!

Join my Facebook group here and comment to enter the giveaway! Add a friend to my group for a second entry 😀 The more LuLa love the better!

See you all on Facebook live January 1st at 8PM EST to pick the winner!

LuLaRoe shop is OPEN!

So much LuLaRoe!

I won’t lie, opening up about 12 big boxes of LuLaRoe inventory felt like Christmas came early this year! It’s been tough not to keep it all 🙂

To shop via Facebook, join my VIP group here:

LuLaRoe Valerie Dennis

To shop from any web browser:

Valerie’s LuLaRoe Inventory

Lastly my jewelry will be up for sale right here on my website.

Some of the items I kept for Isabelle (Sloan and Leggings)