My childhood struggle

Webster dictionary defines different  as, “not the same as another or each other; unlike in nature, form, or quality.”

As a little girl, I always knew that I was different from the other kids. In fact, I was reminded almost every day – how I spoke, because I didn’t form sentences as well as others, how I walked and ran, because I was always wobbly, how I interacted with my peers, because of my social issues from my NLD, when taking a test or a quiz, because I was getting pulled out of class to take them with a special education teacher, and multiple, multiple other reasons.

I’ll never forget about this incident in the 6th grade where one of my “friends” told the guy that I liked that I, well, liked him. Then EVERYONE in the entire grade knew that I did. I hate being at parties to begin with – there was a sixth grade party that we had to go to- and people were already horrible to me. The chaperones wouldn’t let me call my mom, though I was completely inconsolable.

I felt abandoned as I sat by myself watching my peers have a good time. My body began to feel funny – it didn’t feel like the panic attacks I always had, and it certainly didn’t feel like a meltdown which I also experienced frequently. My abdomen ached and had sharp pains, my head was pounding, my whole entire body was twitching, yet nobody seemed to notice. I was terrified! I had never experienced something this severe before, at least not after being traumatized like this. I told the chaperone I felt really, really sick and she still wouldn’t let me call my mom.

So, you guessed it. I spent the rest of the party pretty much by myself (except for a few girls I was sort of friends with that came to check on me, including my best friend, Elizabeth) crying and experiencing full body pain. When I got home I told my parents what had happened when I was at the party and they didn’t seem to know what I had experienced either.

These “attacks” would happen almost every day, resulting me being at the nurses office crying and asking for my mom (everyone wants their mommy when they don’t feel good!). Alllllll throughout middle school, I had these episodes….bladder spasms, leakage, constant abdominal pain, constipation, migraines, exercise intolerance…blah blah blah. When I hit high school, I had my appendix removed in the ninth grade – I woke up in the middle of the night with horrible abdominal pain…worse than anything I had experienced up to this point. My parents called the insurance company on call nurse and she said I need to be taken to the emergency room immediately because she thought I had appendicitis. I got there…had an ultrasound of my belly and my appendix was extremely inflamed. They took it out that night and I was in the hospital for a few days to be monitored.

In the eleventh grade, I had worse abdominal pain than when I had appendicitis…turned out my gallbladder wasn’t working right so they took it out. Of course, my pain continued to get worse after they took it out and the doctor didn’t know what the hell was going on, told me it was stress, all in my head…you know the drill.

After a shit ton of emergency room visits for abdominal pain, they told me I had irritable bowel syndrome and I was under a lot of stress (no shit) and that’s why I was so sick. Boy, were they wrong! No matter what I did, nothing helped. I was stuck in bed for months because I could hardly be without wanting to die from the pain.

I had an evaluation for my NLD a few months back, resulting in Dr. Kay referring me to a doctor at Johns Hopkins for genetic testing because she suspected a mitochondrial disease, which is common with NLD patients. I got in with this fantastic doctor by the name of Dr. Fatemi – look him up, he’s wonderful! Shit ton of tests later, no mitochondrial disease that he can tell, but I tested positive for this version of dysautonomia called Postural Orthostatic Tachycardia Syndrome.

Now, we’re experimenting with different treatments. This isn’t curable (YET!) but I can manage it enough to have a normal life! I can work with my mom and get back to nannying again. He has me drinking, like, 3 liters of water a day I think? I’m also to increase my salt intake.

Ill do a post about POTS another time.

NOTE: just because you experience similar symptoms as I do, does NOT mean that you have what I have! Please please see a doctor if you suspect dysautonomia!

Have a great day 🤓

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