When I was a small child, the circus came to town and they were trying to buy up children to put in their show. The owners were looking for flexible, little children who would be easy to train for contortionist acts. The owners were interested in me, but my parents wanted too much money, and so I got passed over.
When I was in elementary school, my parents signed up my sister and I for beginners gymnastic class. Of course I was ecstatic because I loved to run, jump, and go upside down. I loved the few classes I got to take but my sister did not. Because my sister hated gymnastics, we had to quit. My parents probably also ran out of money so that was another reason why we had to stop going.
Flash forward two decades to the present day, I am still flexible despite my severe arthritis in almost every joint in my body. The circus never actually came to town to buy up flexible, little children (oh darn). But I still wish I could have continued on with gymnastic classes.
Yesterday, I had physical therapy that was supposed to be specifically for my left knee. It ended up being an investigation of my joints and ligaments in my entire body. A doctor and a physical therapist described me as a “very unique case” and there were lots of puzzled faces in the room (including my own). The diagnosis for now is hyper-mobility syndrome. The doctor and physical therapist suspect Ehlers–Danlos syndrome, but I would have to genetically tested for that diagnosis to be 100% positive.
My ligaments are completely stretched out, mostly on my left side. That explains why I usually feel as if I am dragging the left side of my body along. My range on motion on both sides of my body is higher than a person without hyper-mobility syndrome, but it is even higher on my left side. My bones are not fitting properly into my joint sockets because my ligaments are so loose, that is causing the bone in the sockets to wear thin. The size of my bones are also extremely small, my physical therapist says that they are similar in appearance to the bones of a child. On top of that, I have cysts covering my joints and ligaments on my hips, knees, and ankles.
Now I have to completely change the way I do everything in my day to day life.
- I have to wrap my joints in my lower extremities to keep my body from hyper-extending. My body will hyper-extend and I won’t even realize that I’m doing it because it is something I’ve had since birth.
- When I sit, my feet need to touch the ground, so that means I have to get a step stool. I’m starting to feel like I should just move into my Grandmother’s retirement community.
- Both the doctor and physical therapist suggest I get a different chair than the one I have now. But the thought of shelling out a couple hundred dollars on a chair sickens me (seriously, pass the Zofran). I need to sit with a pillow behind my back so that my ligaments won’t extend like they have in the past.
- Anytime I move, my knees need to be centered over the top of my feet. I have medial rotation hip adduction, which means my legs have the tendency to fall inwards in my body instead of outwards. It is because my ligaments aren’t keeping my legs in what should normally be a straight line.
- I am no longer allowed to cross my legs in any way, shape, or form. This includes while standing, sitting, and laying down. Why you may ask? Because of my stupid stretched out ligaments.
I also have at home exercises to do to hopefully tighten my ligaments and strengthen my joints. I go back in two weeks to see if there is any progress and to find out if the doctor and physical therapist feel I need genetic testing. As of right now I am very grumpy. The grumpiest of grumps. While I am grateful for health insurance and medical care, I have to re-learn how to do everything I’ve done for my entire life. I have a huge list of “don’t do’s” and I feel extremely frustrated.
Now my Mom just told me that “This explains everything.” Apparently I was a late stander and walker as a toddler, I didn’t start walking until after I was 2 years old. I had severe growing pains as a child and still have those severe leg aches to this day. I have also always had a “weird” gait that my Mom never quite understood. All the money got spent on my sister’s medical expenses because she had pituitary dwarfism when we were children.
This is why you should never, ever be the second child. Sure, my sister was oddly short, but never mind the child who was crying in pain almost every night and who walked funny. All the money gets spend on fixing up the first child and the second child gets hand me downs and tiny crumbs from the table.
Over 20 years later, my childhood medical mysteries have been solved yet are beyond repair because they weren’t addressed when I was a child.
Please, please don’t have a baby if you cannot afford to take care of them as they grow up.