The Harp of Hope
The Harp of Hope
November 01, 2022
On this episode, Lyndsay Soprano speaks with her guest, Melissa Lamoureaux, about being misdiagnosed and mistreated over and again by doctors. They chat about how long it took to get diagnosed with narcolepsy and more diagnoses keep rolling in. But are her diagnoses accurate or just another twisted path to more pain?
Lyndsay opens the episode talking about avoidance. And how she’s been avoiding more and more lately, but just very specific things in her life. She discusses her OCD and how she has lists for everything and the one list she always leaves on the back burner…her health and wellness list.
She talked about the evening before while she was prepping for the episode she was wondering why she avoids so many things in her life. Even some of the simplest of things.
She came to find out like legitimately that she is scared. Some days feeling like she has a gun pointed to her head to make a doctor’s appointment and needs to make like 20 of them. But has zero faith in a positive outcome of these appointments that need to be made.
Lyndsay talks about valuing people’s time and her own, but she doesn’t want to waste my time going to an appointment that ends up just being a loss. She talks about our healthcare system here in the United States. She speaks of her wellness list and putting it on the top priority and called her foot doctor.
She finally gets on top of her wellness list and finds out from the receptionist when she called “I’m sorry. He has passed away.” He dropped dead of a heart attack my age. He was very nice. He was respectful. He put up with her depravity. He appreciated it even. She was really saddened by this because he was kind of her only diamond in the chronic pain patient life that she lives. Lyndsay talks about blame and not wanting to waste her time in and with a broken system.
Lyndsay introduces her guest, Melissa Lamoureaux AKA Little Miss misdiagnosed because she has been through so many things.
They start with her diagnosis of narcolepsy in 2009.
Melissa goes through how she got diagnosed, all the misdiagnoses, seizures, mono, sleep studies, brain donation, and more.
Melissa talks about how she doesn’t sleep cycle, so that is why she will sleep all night and wake up and feel like she hasn’t slept, which you can imagine the other things your body goes through when it’s exhausted.
She goes on to explain about how she has narcolepsy one, which they recently re-categorized it. So it used to be considered narcolepsy cataplexy or just narcolepsy. They recently made it narcolepsy one or narcolepsy two. She has the one with cataplexy, which is what you see in the movies, obviously not exactly like the movies, but where you fall.
The next question people have is how can she drive? She gets warning signs. And is overly cautious. But that numbing of the fingers, that anxiety is her trigger. Stress and anxiety is her trigger for the cataplectic side of it, which is a loss of muscle tone. It’s kind of your body saying, “I give up.”
So after the sleep study, then and she encourages people to get sleep studies, not just if you’re experiencing stuff like Melissa is talking about, but there are a lot of other things that we’ve learned.
Lyndsay goes on to talk about how she knows that there’s emotion, trauma, things that have happened in Melissa’s life and how those have been contributing factors and if they have contributed to the narcolepsy as well. Lyndsay talks about her ortho issues, five back surgeries, kidney stones, inflammation of her stomach, palindromic rheumatism, Guillain Barre and it goes on and on.
Another diagnosis arose and they discussed that palindromic rheumatism which is a rare type of inflammatory arthritis. And it attacks your joints and causes joint pain and swells up, but then there’s no lasting damage.
They both were trying to hold back tears because this is the reality of the world that and that they hate to say it, but they feel like they have to be crazy wealthy to go in search of some answers that aren’t covered by insurance or aren’t like the traditional medical path.
How much is your health worth?
Melissa and Lyndsay discuss stress and how much of a contributing factor to chronic pain and nutrition.
Lyndsay talks about quitting cheese and that it’s the hardest thing she’s ever had to do in her entire life. And also talks about fear and avoidance and being scared that her diagnosis is wrong.
Wrong the whole time, and that’s her constant.
It’s scary to have hope.
Melissa states “You know what? I appreciate you, and I appreciate this podcast because we hold so much in. There are so many different fears. We put stuff off. We hold stuff in, and we can’t do this alone. It’s just literally killing us to do it alone. And it’s terrifying.”
Let’s get to the heart of how to heal. With you by my side.
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