Invisible Not Broken - Chronic Illness Podcast Network

This week Lucas Robak was kind enough to talk about his experiences with Multiple Sclerosis, time as a lab rat, and some interesting views (his please don't sue us) on the medical system, charity and research organizations, and medicine in the US.

Lucas Robak

The rule everything out diagnosis

Hypnotherapy for pain management (also concerned for how my kids would use this for non-pain management)

The unexpected symptoms and issues with MS or what happens when you have a disorder that affects the ENTIRE body

Teen experience with chronic illness

Symptoms the create a breakup in the MOST unexpected ways.

It's not just women who spend years waiting for a diagnosis

The chronic illness medical carousel

Lab Rats. It can be a lucrative side hustle

A unique perspective full of legal disclaimers on the health system, what happens in research for illnesses, and how to handle these. If you would like Luke to speak publicly you can reach him here.

FDA (Federal Drug Administration) what has been approved, their practices, and some laws around the FDA again these are opinions. Ideas on how chemicals affect our health. (mice MS and aspartame)

BTW this pill could cause suicide (new painkillers with strange side effects)

A special Sesame Street Reference (this does not make this episode child-friendly).

We discussed the Polio was one of the last diseases cured ( here are a few that have been). If you know of more please feel free to leave comments in the comment section. There have been a few and I will link, but I will say with advances and technology it surprises me with how few. Between nonprofits and organizations, it does beg the question of where the money goes? What is the carrot to find a cure? If there is a cure found does the organization have a dissolution plan? Basically, my rule for everything follow the money and ask good questions. Luke admits that he is HIGHLY controversial but the question he asks I would like to hear from heads of organizations. Please if you run an organization I would love to have you on the show. I have so many questions. If you are curious here is an interesting Snopes article about Komen Research CEO salary.

Lobbyists we talk so much about lobbyists. Also, ask how much the CEO of a non-profit makes.

Some of the pitfalls of have a capitalist based medical company.

Luke does prove that I absolutely interview someone I have VERY opposite views on.

Another Spoonie who runs their own business

I'm sorry is selfish, no really he makes an interesting case

His opening dating line is worth a listen

How and when to talk about your chronic illness in social and work situations. In the new social media world, it makes it all much easier than back when I was dating.

How personal accountability when there is a mistake can be a wonderful thing. I screwed up and this is how I'm going to fix it. This formula will make everyone's life so much better.

Spoon Theory

I will remind you all again that his opinions are his own. We definitely had a lively and respectful discussion even if we did not agree. I did have to point out that my disorder if made worse by living not activity.

Favorite Help Books (Money is what is easiest to marriage but Luke believes that these will help with life in general)

Think and Grow Rich

The Magic of Thinking Big