My Invisible Illness

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September 28th-October 4th is invisible illnesses week.

This post has been a long time coming. It’s a manifestation of every little odd symptom I’ve had my entire life. In just the last few months, I’ve received so much clarity into what’s going on with my body.

But first, I want to talk about illnesses we cannot see.

It’s easy to give sympathy to someone with an illness you can actually see: someone in a wheelchair, someone with crutches, or a limp.

Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling. (Wikipedia, 2015)

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10-Things-TO-SAY-Invisible-Illness-revised-400-72dpio-web

Many of you know that I have narcolepsy and PTSD and anxiety. My narcolepsy symptoms got a lot worse after my last pregnancy, and after the loss of my dad. I was under a lot of stress, and had extreme fatigue. Some days, I would go to bed at 5pm and sleep the whole night. Others, I’d be up til 2am because my heart was racing.

This summer we went to a Renaissance festival where I got to do archery. I’ve always been double-jointed, and didn’t get my elbow out-of-the-way. This left a huge bruise down the entire length of my arm. I saw my care provider and explained to her my symptoms. I also got set up with a cardiologist–the same one who saw my dad for 15 years, and whose ARNP happened to be my oldest daughter’s classmate’s mom. I did a holter monitor, EKG and echo–all of which turned out fine. However, my heart rate did tend to run high. I explained that even when I was in top shape, my resting heart rate was abnormally high. She sent in a referral to Mayo Clinic cardiology in Rochester, MN. Finally. This ARNP was a God-send–she listened to me and my symptoms and didn’t just dismiss them as flukes. 

After meeting with Dr. Douglas Wood and his nurse, they decided to do the following tests:

  1. Thermoregulatory sweat test
  2. Autonomic reflex screen
  3. Upright and supine catecholamines
  4. 24 urine sodium
  5. 24 hour ambulatory blood pressure and Holter monitor

These tests show that I have Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), Dysautonomia, Neuropathy, Reynaud’s, and Ehlers-Danlos Syndrome (EDS). Dr. Wood and his staff are all amazing–they really listened to me and had excellent bedside manner. More importantly, they assured me all these issues were NOT IN MY HEAD! There is no cure. Most of it is autoimmune in nature.

In October, I will meet with Mayo Neurology to go over my neurological symptoms. In November, I will meet with Mayo Physical Therapy, and then Dr. Deyle at Mayo Genetics. I’m excited to meet with Dr. Deyle because we are hoping to rule out the vascular kind of EDS–as I have some family history of vascular issues. Vascular EDS would pose the greatest threat to my health as well as the health of any future pregnancies.

You’re probably wondering what kind of symptoms had I been experiencing that have caused me these issues? Have a seat…and maybe grab some popcorn!

  • Heart palpitations
  • Dizziness–particularly when I recline/lay down, or when looking back to change lanes in the car (syncope)
  • Heart rate goes crazy when I change positions
  • Tongue slipping
  • Mental fog
  • Pooling of blood in legs upon standing
  • Intense nausea – DAILY
  • Malaise
  • Numbness and tingling of extremities
  • Shortness of breath doing things that shouldn’t cause it – like stirring a pot
  • History of pleurisy
  • 6 sets of tubes in my ears which has caused keloids (excessive scarring) and hardening of the ear drum
  • Narcolepsy w/ cataplexy
  • Chronic issues w/ charlie horses in jaw, feet, thighs, shins
  • Dislocated fingers
  • Excessive flexibility
  • Chronic sinusitis (even had a septoplasty to correct, but it just left keloids in sinus openings that cause even more sinus issues)
  • Chronic tendonitis
  • Restless leg syndrome
  • Gastroparesis
  • Slow wound healing
  • Easy scarring
  • Stretch marks
  • Pinky toes roll out
  • Keratosis Pilaris
  • Easy bruising
  • Myopia
  • PCOS
  • Anxiety, depression history
  • Asthma
  • Involuntary sighing (I promise, I am not irritated with you! I can’t control it!)
  • Fatigue
  • Pressure on chest when laying down
  • 2 miscarriages
  • History of premature births
  • 3 live births, and the birth that was allowed to progress on its own was lightning fast
  • Unable to stand for very long
  • Joint pain, particularly in knees, wrists, fingers
  • Subluxations
  • I roll my ankles–a lot
  • Stumbling, tripping excessively
  • Blacking out
  • Fatty tissue on my upper arms
  • Morton’s neuroma
  • Sleep paralysis
  • Orthostatic intolerance
  • Dry eyes
  • Dry mouth
  • Flushing
  • Itching
  • Unsteady gait
  • Weakness
  • Extreme pain in extremities when exposed to cooler temperatures (such as trying to cut chicken from the fridge)

Can you do any of these? I can do them all! It’s known as the Beighton Scale, and it indicates EDS.beighton

So, those are the symptoms I can think of…for now:) By looking at me, could you tell I was struggling? No? Please show patience and compassion with me. Give me extra time to return a phone call or text. Forgive me if I cancel our plans. Some days I will have very minimal symptoms. Other days, I’ll be in bed the entire day and night. For more insight onto why some days I feel better than others, read The Spoon Theory.

THERE IS NO CURE. Meee

I urge you to be kind. Always.

xoxo,

Kathy

9 thoughts on “My Invisible Illness”

  1. Are you sure we are not related? Lol. The more I read, the more it felt like I was reading a doctor report with my name on it (with some exceptions). In August I was told I have Fibromyalgia, but because of the move to California I didn’t get to go to the Fibromyalgia Clinic in Rochester. So now I hunt for a doctor out here. Having an invisible disease is tough, most people have a hard time understanding. If you ever need someone to talk to I am just a phone call away. Hugs!!!

    1. Thanks, Carey! I’m so sorry you’re going through a similar experience:( My neurology appt was kind of a waste of time – we shall see what the geneticist says! Gentle hugs!

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  6. Blogs like these play a very significant role in creating awareness about autonomic disorders. I am happy to see that you know and clearly defined all the symptoms that you face and due to which, you finally got a name to the sickness you have and this will help your doctor to prescribe a treatment, specifically for pain management., for you.

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