My Health
I have an extensive and complex medical history!
I take medicines, supplements, and use things like braces and kinesiology tape to help alleviate some of my symptoms.
I made this page to more easily explain my health to those who are curious.
Most of my illnesses are invisible, chronic, and dynamic.
Invisible: For you it's hard to see because the symptoms aren't immediately apparent.
Chronic: They will not go away. There is no cure.
Dynamic: My needs and abilities change day by day.
EDS (Hypermobility type)
Ehlers-Danlos Syndrome is a genetic disease that affects connective tissue and collagen. There are 13 subtypes. I have hypermobility type!
Connective tissue and collagen are the building blocks of the body. They support and structure skin, blood vessels, bones and organs. So my body is not built and held together as well as yours!
This causes a LOT of issues throughout the whole body. Too many to list! There are many comorbidities with EDS, meaning I have many illnesses because EDS affects the whole body in lots of ways.
Each person with EDS will be affected differently. Someone with EDS may be more badly affected than someone else. Person A may have a bad left knee and person B's may be just fine.
Joints stretch farther than normal, skin can be stretched further than normal, dislocations and partial dislocations (subluxations), chronic pain, digestive issues, easy bruising and tissue fragility are all some examples of common symptoms. There are many more!
It is considered "rare" only because it is under diagnosed. Doctors often do not know enough about EDS.
Awareness is key!
Spinal Fusion
At the age of 14 a bone in my spine turned to mush due to a random bone disease. They never found an infection so they never found out the cause.
They had to remove the bone, put a mesh cage in it's place, and gave me a spinal fusion.
(That's part of where "fusion" in Smileyfusion comes from!)
There were complications. I spent a week in the ICU, 3 weeks in the hospital in total.
I've had a second spinal surgery to remove a lose bolt and extend the fusion up one level.
My spine affects me greatly and alters my physical abilities everyday.
Mental Health
Being open and honest about mental health is important to me! You never know what is going on within another person's mind. Please always try to be kind, non-judgmental, and open to understanding.
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C-PTSD: Complex PTSD is caused by multiple traumatic events and/or long term trauma. I have certain words, subject matter, people and things that legitimately trigger me and I try to avoid them. I struggle with certain game content and am NOT a fan of loud, sudden, unexpected noises
PTSD is often not something that would be visible to you, this does not mean it's not there or real.
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Anxiety: My whole life I've struggled with anxiety as well as social anxiety. Remember: just because someone is appearing to you to be fine with socialization does not mean they are not struggling with it still!
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Depression: I've also dealt with depression my whole life. I try my best to be positive and spread positivity but I also have a very tough life when you consider my health. For me this means I go through depression often because there are usually no solutions to my problems. This is a tough reality but it is what it is. I always pick myself up and return to the fight but the weight of my struggles can get to me sometimes, understandably!
Eagles Syndrome
In August 2018 I got hit in the head which caused really horrible symptoms. For 5 months I was stuck in bed 24/7 because I could not be physically upright.
Being hit in the head moved my skull placement so that a tiny pointy bone (called the styloid process) was touching my carotid artery, limiting me and my life immensely..
I could not laugh. I struggled to talk. I could not take care of myself and it was easily one of the worst times of my life.
Dysautonomia
and
Dysautonomia is a disorder of the autonomic nervous system function.
This generally involves issues of either an overactive or not active enough response of the sympathetic or parasympathetic functions of your body.
Dizziness, fainting, low blood pressure, vaso-vagal syncope, breathing issues, intolerance to exercise, sensitivity to lights and stimulus, concentration and memory problems, overactive senses, and many more.
Adenomyosis
and
Adenomyosis is a condition in which the tissue lining the inner portion of the uterus (which sheds during menstruation) has started to grow in the muscle layer of the uterus.
Fertility issues, severe menstrual cramps that worsen over time, anemia, abdominal bloating and pressure, nausea, fatigue, chronic pain, and many more.
Interstitial Cystitis
Interstitial Cystitis (IC), also known as "painful bladder syndrome", is a chronic bladder disorder.
The symptoms of IC vary in duration and severity from person to person.
Urinary frequency, urinary urgency, and chronic pelvic + bladder pain.
In a normal night I get up atleast 3 times because of my bladder. On a bad night I could be up 10+ times. On a horrible night I may not sleep at all. My diet is VERY limited due to many foods causing pain in my bladder (not my stomach which is a common misconception!).
I thankfully had surgery at the end of July 2020 to remove the bone.
The surgery helped me immensely!
BUT!
I still have to look into my jugular veins which are compressed, possibly by my skull itself. Because of the pandemic I am unable to safely go do the testing.
P.O.T.S.
Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia.
Fainting and dizziness upon standing. Reduced blood pressure, reduced blood volume, reduced blood flow to heart which causes heart rate to increase (tachycardia).
I need to take salt tablets and drink lots of water to try to keep my blood volume and blood pressure up! You will often see me take salts pill on stream!
Endometriosis
Endometriosis is a condition in which tissue somewhat resembling, but not identical to, the tissue lining the inner portion of the uterus (which sheds during menstruation) is found outside the uterus.
It can cause adhesions which can attach your organs to other organs or the abdominal/pelvic wall.
Fertility issues, inflammation, severe menstrual cramps, abdominal pain during or not during period, bleeding not during period, anemia, nausea, malaise, fatigue, chronic pain, and many more.
Restricted Diet
In addition to IC, many of my other health conditions greatly limit the food I can eat.
It is not by choice or because I am picky.
Often times food that is okay for one condition is a big no-no for another.
It is all trial and error as far as what I can and can't eat so it can be scary to try new foods.
My diet is very restricted. I have to eat all organic and only specific brands are safe.
Currently I can only consume:
Water, Quinoa, Ground Turkey, Chicken (rare) , and Green Beans. All specific brands, all organic only.