Focus On The Fight | Myositis

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Welcome to Focus On The Fight, a series of interviews that will be posted every Friday, focusing on a blogger and their unique  health conditions. 

This week we will meet Amy Nora. Amy has a multitude of chronic condition including the condition we will highlight this week: Myositis

Amy is in her mid 30s, she is a former pharmacy industry employee now professional volunteer, patient, and ambassador for patients with Chronic diseases. Amy has been diagnosed with Systemic Lupus, Rhuematoid Arthritis, Sjögrens Syndrome, Epilepsy, Myositis, Fibromyalgia, Migraines, NueroCardiogenic Syncope, Epilepsy, Osteo-Arthritis, Tachycardia, & Raynauds. Like I noted above, today we will focus on Myositis.

According to Medline myositis is inflammation of the muscles that are used to move your body. Myositis can be caused my an injury, infection, or autoimmune disease. There are two specific kinds of myositis, polymyositis and dermatomyositis. Polymyositis impacts usually the muscles closest to the trunk and causes muscle weakness. Dermatomyocitis will muscle weakness and a skin rash.

Symptoms of Myositis

  • Fatigue after walking or standing

  • Tripping or falling

  • Trouble swallowing or breathing

Now that we all know a little bit about Amy and the condition she lives with I would like to share the entirety of Amy’s interview.

How long did it take you to get diagnosed? Now you have been diagnosed and can look back at your past, is there an event that you can pinpoint as a flare now that at the time you didn’t know what it was?

Diagnosis only took 6 weeks.  I ignored the symptoms for over ten years as they got progressively worse.  I can see multiple flares, from the crippling fatigue, the photosensitive rashes, the almost constant butterfly rash, and the increased joint pain were just but a few.

Tell us about how your illness(es) impacts your daily life!

I went from being an extremely active person, physically fit to someone that can't stand long enough to cook a meal.  I can't bend to get laundry out of the dryer. 

Have you noticed that your health has impacted any of your current or previous relationships!? If so, how?

There is a joke that trials in life will let you know who your true friends are.  This is very true.  Only true friends stick around; honestly you even wonder how long that will last.

In what way has your life changed since your diagnosis? Is there anything that you cannot do now that you could do before diagnosis? Every single facet of my life has changed.  I went from an energetic, fast paced woman that was ready to taken on the world with excitement each day to someone that looks like Eyore could beat in a 10 step race. I went from Executive fast track to disabled at home, almost completely bed bound.  If it weren't for Click-pick I wouldn't have food to eat.

Everyone’s disease will act different, for you how do you know you are having a flare? Increased joint swelling, fatigue, low  grade fever, hair loss, vomitting, rash, swollen lymphnodes

 What do you do to treat your flares? Or to make your bad days better?

Rest, prednisone if it gets really bad, heat.

In closing I asked Amy two last questions. I asked her what advice she would give to someone who is going through the diagnosis process or is newly diagnosed. As well as what she would want the world to know about living with a chronic illness. Here is what she said.

-Keep your sense of humor.  Laugh,Laugh, Laugh...

- I want people to understand that we are still human. Please don't discount us or belittle us.  And ask questions, you may be surprised at the answers you hear from us

I would like to thank Amy for sharing her story with us.  She has such a passion and drive to share about her health and Illness. She also has a passion to educate others about this condition and others chronic illness. .

if you want more information on myositis you can visit The John Hopkins Myositis Center.

With Love,

Amber