This post is probably going to be pretty long, because it’s been years of my life.
Since I was extremely young, I’ve been constantly sick and easily exhausted. The first ”big” illness happened around age 7. I tested positive for a hpylori infection, after having severe heartburn and random bouts of vomiting for months. I remember school nurses and people around me saying I was faking and making myself sick. Until there was finally something. I was also always in pain, like random tingling or painful shooting feelings in random parts of my body. I assumed that pain was normal. Apparently, it isn’t.
Hpylori requires a ton of antibiotic and antacid. As you can imagine, that’s hard for a child. I had an extremely hard time swallowing the pills. It wasn’t fun. But after diagnoses, it went away somewhat quickly. It is still a big memory of my life, so it wasn’t, say, gone as quick as a cold. But, it didn’t last too long.
However, my stomach problems never went away. And other sicknesses appeared.
Around age 10, I noticed my doctors were always telling me to “calm down”, “lay down”, and telling me I was “anxious”. Yet, I felt fine. I wasn’t panicking when they’d say these things. I also told them how I was always tired and nauseated. Still, I got a lot of, “Well you need to calm down”. Finally, my doctor was listening to my heart and noticed it wasn’t only fast, but sounded off. She found a murmur. All that “anxiety” I supposedly had, didn’t exist. I had a heart condition.
I was horrid at first. I truly believed I was going to die. Hearing something is wrong with your heart, is really scary. Especially as a child. I cried, a bit. I didn’t want to talk to people at school.
I went to the pediatric cardiologist, a male doctor, who basically told my parents that this ”situation” of fast heart beating and fainting was normal for girls going through puberty. He said it’s worse during their menstruation period. He called it ”cardiovascular vasodepressor syncope”, which I later found out is literally just the scientific terms for the symptoms I was experiencing. It wasn’t an actual diagnoses at all, but he made it sound like one. He suggested I take salt pills and calm down with sports. However, some tests showed that I did have a small hole In my heart.
There was a lot of testing. I’ve had an ultrasound on my heart, stress tests, treadmill tests, wires all over me for days at a time. It was a lot. I missed quite a bit of school.
The salt pills made me vomit, so I couldn’t take them. And I was pretty devastated that I could no longer play sports. I was in cross country and soccer, played multiple other things for fun, and worked out all the time. I had to just stop all of that.
As I got older, I noticed the random pains I felt were worse. I noticed I was much more tired than any of my friends my age, all the time. I didn’t have the energy everyone else did. I wasn’t able to and didn’t want to do as much, physically. I was just tired, all the time. I had gone to the hospital a few times with a “heart fit”, as I call them. My heart will sometimes race so fast that I basically become paralyzed and freeze up. I can’t do much. They usually give me a shot (in the butt) of tramadol. I’m not sure how tramadol slows the heart down, but it does, apparently.
I got pregnant with my daughter at 17. My pregnancy was painful, though my doctor didn’t say anything was specifically dangerous .
I often had sharp pains around my abdomen and ribs. When my daughter would put her feet on my rib area, it was excruciating. My doctor said there was nothing she could do about it. She even let me go to 42 weeks gestation with her, despite the amount of pain I was in and knowing I had a heart condition. Though thankfully, nothing happened, it could have been extremely dangerous.
I went to a different cardiologist when I turned 18, and that was a big change. This cardiologist is the one who told me the “diagnoses” I had from the pediatric doctor was just symptoms in scientific terms. She went over my chart history and all my ECGs, and she says, “It’s obvious what you have. You have innapropriate sinus tachycardia”. She then explained to me what it was. I asked her why I had gone through so much testing and a wrong diagnoses. She said it’s possible to take years to diagnose something like that, because they need multiple test results over time. Either way, the pediatric doctor didn’t diagnose me with any actual condition, and therefore, didn’t do his job…
In 2018, I got pregnant with my toddler. That pregnancy took a toll on me. I was 24, and i had handicap tags, was told to quit my job. It was difficult. At least I had switched doctors and had a good one who was truly watching after me. The worst part about having a handicap tag was the elderly people who had handicap tags just for being elderly, staring me down in parking lots instead of helping me. I’ve had multiple sit behind me in their cars, glaring at me, watching me struggle to pack groceries. Not one helped. And that is one reason I am against giving elderly tags just for being 65+…
Anyways,
I told my doctor I was sick of being exhausted and in pain, and that my heart condition alone just doesn’t make for how I constantly feel, and have felt since I was a child. She said I was right.
I was sent to 7 different specialists. I had multiple blood tests in a few days. I fainted for one. They took fifteen entire viles of blood from me in one sitting. My body couldn’t handle it. I can’t quite comprehend why they did that all at once. But, they did…
They found I have Crohn’s disease on top of my inappropriate sinus tachycardia, and they believe I may have fibromyalgia as well. For a second there, they thought I might have cancer. They had found a mutated gene. However, they did more testing and found i do not. I am beyond thankful for that, and can’t imagine how strong you must be to go through that…
So, i have crohns and a form of tachycardia, for sure. Other things as well, but I got sick of all the tests and need a break for a little while. I’ve been poked and prodded too much. I want a break…
I thought that Crohn’s disease was similar to irritable bowel syndrome or something of that nature. It is not. It is an immune disorder, similar to lupus (Which is what else they thought I may have).
Growing up with chronic illnesses has been difficult, to say the least. I was (and am) always in pain, always exhausted. My stomach is always acting up. I have to watch what I eat, watch what I do, rest often. That is insanely unfair as a child. I just wanted to play like everyone else. It’s unfair now, too. My kids want me to play with them, and I usually don’t have the energy to. That’s hard to explain to a toddler and autistic child. And for years, I was told I’m a hypochondriac or purposely making myself sick. I get told way too often that I’m “too young” to be tired or sick. Some people will never understand, and I will never understand what feeling good / normal feels like.
I haven’t found many resources in Texas to get the healthcare I truly need, but I’m getting what I can with what is here. We plan on moving to Reno, NV. There are more resources there, and I have family close by who can help me there on days I’m struggling.
If you’re reading this and need someone to talk to about your pains or illnesses, i am here. Message me. I will support you.
p.s. I have ptsd and brain damage as well, but that will be another post. Mind and body work together, but they are separate! These chronic illnesses I have are my body, not my brain.
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