My Journey for a Diagnosis

My Journey for a Diagnosis This is a page I created as a sort of blog space to record my journey for finding a diagnosis!

08/17/2021

So I've never been what you would consider, a "healthy" person. I got sick a lot when I was little, and I never really felt "right".

When I was about 3 years old I got the flu. My temperature spiked up to 105, nearly killing me, and giving me febrile seizures. But what went wrong here? After the flu had passed, and the fever was gone, I continued to have what my mother described as "drop seizures", for which my pediatrician ordered an EEG to check for seizure activity.

A normal EEG is done in about 45 minutes. Which often means that the test doesn't always catch seizure activity in that time frame. Which is what happened to me. The drop seizures "stopped" after a few weeks, and nothing ever came of it. Little did I know, that has come to haunt me in my adult life, which I will get into later.

As I grew, and became more adventurous, I started to break a lot of bones. Sometimes this would happen for almost no reason at all. I broke so many bones that the question of, "what's wrong with this picture", started to be more and more of a thing. We quickly learned that my bone density was not what a child's bone density should be. Breaking bones was just now going to be a part of my life, to which it still is.

At the age of 8 I discovered a bullseye rash on myself, and was quickly brought in for Lyme disease testing. I was treated and deemed "cured" from Lyme. Of course now I know, that is not possible, but I will get into that later as well.

As I continued to grow up, I had more and more health problems. Chronic urinary tract infections, chronic kidney infections from said UTI's, fevers, stomach issues, ect... and then came the PAIN.

I had pain everywhere, from my toes to the top of my head. There were times where my HAIR would hurt! (No, there are no nerve endings in your hair. Did my hair still hurt? YES). These symptoms were there, and I couldn't make sense of it. I didn't understand why I was in so much pain, why I kept getting sick, why I kept breaking bones, why all of these things kept happening to me.

All of these events led me into my adulthood, never understanding why I didn't have the energy everyone else had, or why no one else felt pain the way I did. This was just the start.

08/17/2021

Hello! My name is Melissa! I want to start this page by explaining who I am, and why I feel it to be so important to create a blog or medical journal like this. It will take me quite some time to get together all the content I want on here, as this has been a LONG journey. A journey that hasn't reached it's destination yet, and likely never will, as the conditions I face are chronic, and even with treatment, are not curable.

I am a wife, a mother of 6 children, a bartender, a vocalist, a painter, a crafter, and so much more than just my medical problems. Unfortunately, when you have chronic health conditions such as mine... your medical life becomes a good part of who you are.

I created this page to put together my journey and struggles, and raise awareness of the challenges people, such as myself, face on a daily basis.

I have cognitive and memory problems, so trust me, what I post here isn't even half of what I have been through medically. My recall is not great and I am sure I will miss some stuff, but I will try my best!

Just a warning, there will be a lot of longer posts on this page that will definitely take a few minutes or more to read.

Wish me luck!

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Harwich, MA

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