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September 9, 2020

Meet My Diagnosis: Series Intro

Main Points:

  • This is the intro post to a new series of posts I am going to have called, Meet My Diagnosis
  • Each of these posts will feature one of my main diseases explained in a simple way, in a science-y way and ending with my personal story with it and where I am at now
  • Below is a list of all planned posts in this series and the posts will be linked as they are published for easy access.

Where to Start?

One of the questions I get asked ALL the time is, “What do you have?” or “What are you diagnosed with?” I really love and appreciate when people ask me because it shows me they care. I am completely and totally an open book, but when people ask me this I never know what to say. I think most people assume it’s one disease or something they have heard of before (something their aunt’s high school best friend’s mom had) or at the very least something easy to understand. They think it’s like a one word answer, “Oh I have ____” and that’s it. 

They aren’t expecting, well, this mess of rare diseases that doctors don’t even understand and most haven’t even heard of. They aren’t expecting to not know or heard of most of them. They aren’t expecting there to not be treatments for almost all of them. They aren’t expecting doctors to not know what they are doing and make things worse (yes this is a real thing that happens all the time). They aren’t expecting there to not be answers. They aren’t expecting me to tell them I’ve spent the last few years being a full-time patient. They aren’t expecting that it was caused by something in the environment and that all this could literally happen to anyone at any time. 

It’s hard to understand all of that because for most people when you get sick, doctors know what it is usually within the first few visits, they have an action plan to get you better and everything is pretty straightforward. Tests are always approved, everyone believes you and you can easily have access to what you need to get better and move forward with your life. (wow, this right here is the dream I tell you)

So when people ask me, I never know what to say. 

Do I share the summary or do I go into the real nitty gritty of my health story? Do I just brush over what these diseases are and play it off like it’s all good, belittling the issues to make the person more comfortable or do I share the actual impact these diseases (and the path to getting diagnosed with them) have had on my life? Will it overwhelm them and make them not want to be around me? Do they want the just of it or do they want the science behind it? Will this completely kill the vibe?  (nothing says vibe killer like a bunch of progressive diseases that have no treatments) Will this give them anxiety in any way? (just try to be mindful! and also many times people want to know the details of the disease because they worry they may have it (though they probably don’t since these are rare)). 

These are all questions I have to ask myself before answering their question. So I thought this might be the best way to do it here on my site, putting it in all the forms so that you can choose which works best for you! 

I’m starting a blog series of posts called, Meet My Diagnosis, where I will go through each of my main diseases and share what they are in simple summary terms, then go through the symptoms, causes, testing and treatments for it and end each post with my diagnosis story and an update of where I am at now. 

My hope is that whether you are a casual reader or a patient searching for your diagnosis, these posts will serve you in whatever way you need. 

So below is my list of posts I currently have planned. These are just my main diagnoses and for now I think I’m just going to start with these.  As I write them, I will link them here too so it’ll be super easy for you to access. 

Dysautonomia Conditions: 

Autoimmune Autonomic Ganglionopathy: The one that causes all the other ones. 

 Postural Orthostatic Tachycardia Syndrome (POTS): The one with the fast heart rate and fainting.

Small Fiber Mediated Autonomic Dysfunction: The one you think is numbness and tingling but actually is not.

GI Tract Paralysis Conditions: 

Gastroparesis: The one with the paralyzed stomach.

Intestinal Dysmotility: The one with the paralyzed intestines.

Chronic Intestinal Psuedo Obstruction: The one with the intestinal obstructions.

Esophageal Dysmotility: The one with the paralyzed Esophagus.


Celiac Disease: The one that means no gluten, not even a crumb.

Raynaud’s Disease: The one where my fingers turn white.

Severe Hypoglycemia Unawareness: The one with the blood sugar problems, but isn’t diabetes.

Heavy Metal Poisoning: The one where I got poisoned by the chemicals in the environment and it caused all this.

Autoimmune Thyroid: The one we caught early

Muscle Tension Dysphonia: The one that makes my voice raspy.

Disclaimer: Content on this website is intended for informational purposes only and is not meant to provide personalized medical advice. I draw on numerous health sources, some of which are linked above. Please consult them for more information and a licensed professional for personalized recommendations.

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