A Real Talk About Pain Management: The Cost Of Chronic Pain: The Opioid Epidemic in Four Letter Words: A Chronic Illness Podcast

Click title to listen to our chronic illness podcast all about chronic pain management which is now privately being called the opioid crisis in four letter words.

 

This administration moralizes those who are weak and helpless, they are not going to the pharmacies forcing them to stop or change.

Privilege and pain management 

Snake oil

True cost of chronic pain

Opioid epidemic in hands of pain doctors this is not moral

Hope on the scaffold pain management and desperation

Fibromyalgia, A Spoonie in Business, Selfcare, Best Gifts to Give Someone Who has Chronic Illness, & The Joys of Hormones and Chronic Illness

Click the title to listen to Invisible Not Broken's interview with Eva Lana Founder of Wellacopia who runs her business while dealing with her chronic illness, fibromyalgia

Join Invisible Not Broken, a chronic illness podcast, this week when I interview Wellacopia founder about her journey so far into the world of chronic illness, spoonie life, and being a new business owner with fibromyalgia. Also a great idea for a gift for the spoonie in your life....Tempurpedic mattress!

Real Romance: Carbs and Insulin Diabetes and Colitis: Parenting With Chronic Illness: Invisible Illness Serial Podcast

Click Title To Listen To Our Chronic Illness Podcast (and don't forget to order Vanessa's adorable children's book!)

 

 

 

isorder Info

Name *Vanessa Jean Locke

Age * 44

What is your disorder? *

Diabetes Type 1, Ulcerative Colitis, Hypo Thyroid, Vitiligo and Sjogrens (eyes)

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

11

Who were you before your illness became debilitating? *

I was a carefree kid who enjoyed lemonade for fun rather than a hypo treatment. I don’t remember a lot about being without chronic illness as part of my life.

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

Such an interesting question. If I didn’t have to manage the daily implications of my conditions, pursuits such as university study, full-time employment or highly demanding career options (nursing, teaching) and even enjoying social outings would be feasible. I try to focus on what I can contribute though!

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

I minimize my pain. You will only know that I’m not feeling well or in pain when I’ve endured many hours or days of painful symptoms. I may speak curtly but I don’t mean to push you away. I feel like despite my best efforts, my body betrays me. Feelings of frustration and despair can be daily. Solitude, quality sleep and resetting my mind will help me be the Vanessa you know again.

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

Beyond a cure, affordability of the continuous glucose monitoring (CGM) system would help a lot. Currently, the system is subsidized to those aged 21 and under (in Australia) but at full cost, $300-400 per month is too high to be sustainable. The system is based on a wearable sensor that can give data about blood sugar trends. Used in conjunction with normal finger prick blood testing, there is potential for added peace of mind and tighter control of blood sugar measures.

Do you have any life hacks? *

When I’m exhausted but need to go out and not look as though I’ve escaped from a morgue, dry shampoo helps me look as though I've washed my hair and B.B. cream is a desert island product—dark circles, rashy and pale to kinda of looking ‘normal’ in 2 minutes. Drinking fruit juice (orange or apple are most reliable) will help a hypo discreetly and quickly without having to shove candy in my mouth. It sounds like fun but believe me, it’s not.

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

Every support, emotional and physical, I get from my husband. I call him my angel on Earth. From allowing me to rest while he looks after the house or kids to talking with me in my low times...just being there with no judgment. It’s priceless to me. Outside the immediate family in my house, my expectations are low. People know I ‘have conditions’ but it’s confusing for them. Unless I am visibly sick or they have a specific question, it’s not something often talked about.

How has your invisible illness affected your relationships? *

I’m fortunate to soon be celebrating my 19 year wedding anniversary to the most incredible man who defies logic in his acceptance of me. Our marriage has gone through many ups and downs but at the core is the most thrilling unconditional love. It’s this love that gets us through my times of illness & lethargy.

Is there anything you are afraid to tell even the people closest to you? *

Big question. I’m not sure I’m ready to answer.

What is your best coping mechanism? *

My mind.

What are you the most fearful of and hopeful for in the future? *

Fearful: further autoimmunities corrupting my body. I wonder if it will be an autoimmune condition that claims my life in the end...or will I pass from old age? Hopeful: further technology to stabilize Diabetes. I am hopeful and expectant that none of my disorders have been passed to my children.

What is your favorite swear word?

SHIT!!!

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.

My Instagram page and Facebook page

Any questions you think we should add to this list?

What’s the hardest/best lesson your condition has taught you?

Monica's Note: We discussed chronic and clinical depression and if you have ever dealt with this you will know depression is very different from sad. If you are trying to understand clinical depression I would like to introduce you to one of my favorite webcomics Hyperbole and a Half by Allie Brosh In episode 1 and episode 2 she gave THE BEST explanations for what clinical depression feels like. We are a show that discusses medical issues we highly recommend visiting your doctor if you are experiencing symptoms.

Sex and Disability: Everything You Want To Know About Dating and Chronic Illness But Were Afraid To Ask

Click Title to Listen To Our Invisible Disabilities Podcast

 

Sex and Disability: Everything You Want To Know About Dating and Chronic Illness You Wanted To Know But Were Afraid To Ask. Invisible Not Broken an invisible illness podcast.

Today a bear and a vanilla suburban housewife talk sex and relationships with chronic illness.

I have Ehlers Danlos, MCA, POTS, and Fibromyalgia here my interview here

Kyros had food allergies and Morton's Neuroma listen here

Ehlers Danlos, Fibromyalgia, POTS, & MCA Collect Them All {Invisible Illness Podcast}

Click Title To Listen To Invisible Illness Podcast

 

 

 

 

This is my interview. It is candid and though I am writing this before recording I am guessing littered with swear words. If I have to live like this, be inspiring, be funny, and do all of the other things I need to I get to lean on my favorite four letter word. If this is offensive to you please know that being in constant pain every day is offensive to me.

Ehlers Danlos

POTS

Fibromyalgia

Thank you so much for listening. Please share with a friend and don't forget to leave a kind if not glowing review on iTunes.

Until next time

Be Kind. Be Gentle. Be a Bad Ass.

Invisible Illness and the Adventure of Getting a Diagnosis {Diagnosis: precious, my precious}

Click Title To Listen ToThe Podcast

 

When you have something rare and invisible (with added issues of such things as weight, socioeconomic status, female, or age) many times a doctor has never heard of your illness or had only heard about it in passing in medical school. There can be issues of not knowing how to properly administer tests (fibromyalgia test is pressure points and many doctors still think that Ehlers Danlos can only be diagnosed if someone has super stretchy skin). Kyros had to perform most of his own diagnostic tests at home for his food allergies.

I hope you enjoy this episode. It was an emotional one to record as my diagnosis took over 20 costly years to obtain and I know Kyros went through many pitfalls to get to his.

A Bear, A Zombie Leg, Food Allergy, Morton's Neuroma, and Living the Spoonie Life

Click Title To Hear Interview on our chronic illness podcast

Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends.
Kyros has
A Cadaver part in his leg (blame it on the zombie's leg)
Morton's neuroma
Arthritis
Dairy Allergy
Spoon Theory
We also cover poor city planning otherwise known as wheelchair XGames and the many meanings of "I'm fine."

Gas Lighting: Searching For Chronic Illness Diagnosis in American Healthcare System (Its' funnier than it sounds and just as frustrating)

Click title listen to our invisible illness podcast about being sick in America (oh yes this will get political), parenting with an invisible illness, and some slam poetry.

Listen to the podcast here

If you enjoy

  1. Share with someone who needs to hear this
  2. Subscribe
  3. Glowing and loving reviews on itunes are encouraged

 

PTSD, Chronic Pain, Extensive nerve injury  nerve injuries in both arms, Not Quite Fibromyalgia (is that a thing?), planters fasciitis, Anxiety/Depression

(...Hang on, maybe Ehlers-Danlos?? Amazing the things you can learn doing podcast interviews...) After watching Jen through the interview I was impressed at all of the crazy shapes she was making while stretching. She also has the swan deformity and so many other symptoms of the disorder I have.

 

 

Did I get lucky! I got to make a new friend. I hope you enjoy listening to Jen. She is an amazing poet and at the end of the interview, you can hear two very powerful poems. She is hilarious and strong. She has been dealing with being sick and frail even though she has made massive changes (losing 100lbs) and has just started in on her 40's. We talk about parenting with a chronic illness, the American healthcare system (buckle up its' about to get political), the importance of art when you can't get out of bed, and how important friendships are especially when you are dealing with chronic invisible illness.