September 04, 2019

Pt.2 Interview With Wendi Nicholson: LCAT, Orphan Disorders, Fibromyalgia, Hypothyroid, Functional Neurological Disorder, Parenting with Chronic Illness and Being Real Part 2

43 minutes

Website/Blog, Twitter, & Instagram Handle

@wendinicholson @parentingactually www.parentingactually.com

Disorder Info

What is your disorder? *

LCAT Deficiency | Fibromyalgia | Functional Nuerological Disorder

At what age did your disorder become a daily issue? *

Who were you before your illness became debilitating? *

I was who I am now just with more capability

What would you do if you were not dealing with your invisible illness? *

I would not value the good times like I do now.

What would you like people to know about your daily life? *

That I make it a point to make each moment count.

What would make living and moving in the world easier for you? *

A community of those who understood but didn’t operate on sympathy

Do you have any life hacks? *

TONS! Weighted blanket Holistic Living Tons more

Note from Monica I could not find this company but this is the least expensive one I found EVER. Yes, it is on Amazon. No I do not support Amazon for MANY reasons. Yes, I use them. Feel however you need to about this.

What kind of support do you get from family or friends? *

My husband is amazing. I have a few friends but to be honest, I don’t talk about my health. I’m a big believer in manifesting so if I focus on it, that’s what I’m going to attract more of.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes. All the time. My own family has mentioned that they think I’ve made it all up. Why anyone would do that is beyond me. What changed the game was one member came to the hospital and the doctors gave me a life expectancy. They looked into my father’s eyes and gave him a number. It became real in that moment.

How has your chronic illness affected your relationships? *

I have to cancel plans often, so that’s a real bummer. I have to watch what I eat or else I will feel impacted by certain foods so that can be annoying to some. Flares are unpredictable and they can happen right in the middle of an outing, and then I have to cut the time short. I also have little tolerance for people who complain about things I wish I had. I have a zero whining policy. If I have a friend who complains about something he/she can control, that impacts our relationship. Fortunately I don’t spend time with people of this description.

Is there anything you are afraid to tell people in your life? *

I’m very vocal about most things on my mind. But I have been known to suffer in silence. I literally count the time I know I have left. My kids will be teenagers. Most moms are preparing their thoughts and emotions for their children to go to college and purse their dreams. While I do that also, I am silently preparing them for life without their mother as if it’s it’s inevitable

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes. Because it’s rare, most docs either over treat, under treat, or call me insane. Lol

What is your best coping mechanism? *

Singing. It is physically impossible to sing and feel or think anything other than the music and lyrics.

What are you the most concerned about and the most hopeful for in the future? *

Concerned about my family, naturally. Hopeful that time spent is time well wasted, filled with memories and joy. Most people not on borrowed time take their days for granted.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

it’s all encompassed in my diagnosis

What is the hardest and/or best lesson your condition has taught you?

To value very good day and accept the bad. Anything else is fruitless and a waste of time and energy.

What is the best purchase under $100 that helped your life

Honestly? My essential oil Starter Kit (ok it was $150) with 12 options for a med free, side effect free life. It was a gateway to a healthy daily life, lessening my flares and my pains.

Any questions you think we should add to this list?

How can friends and family help you the best? What does support look like to you?

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By Hosts: Monica and Eva

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