A Lemon Car

I was told by my doctor growing up that my body was a "lemon car." 

According to Carfax, a lemon car is one that has "a substantial defect that the automaker can’t fix within a reasonable amount of time". 

Every 14-year-old's dream to be. A lemon car. 

I was born with a connective tissue disorder called Ehler's Danlos Syndrome. But we wouldn't know that until I was in my early 20's. My entire childhood was filled with doctor's visits and different offices and specialists, from physical therapists to gastroenterologists. Putting out little fires, so to speak, without knowing an eternal flame was lit within my very DNA. 

As mentioned in a previous post, I started physical therapy when I was in the first grade to help with unstable ankles. It was there that my physical therapist said that I would need physical therapy for the rest of my life. I have seen physical therapists in California, Utah, Idaho and Tennessee for various joints and ligaments. I have had the same physical therapist for the past 3 years now. I consider him as close as an uncle. He has seen me through 3 surgeries and has advocated for me in ways I didn't know were possible. He's patient and he listens. May he never quit/retire. Long live my physical therapist. 

Back in my teens, I had physical therapy on my knees. I had these weird instances where it felt like my bone would shift and would cause an immense amount of pain. I was told it must be my kneecap dislocating because "knees don't dislocate". I was vacuuming carpet on my hands and knees when one of these occurrences happened. In fact, it had happened twice while vacuuming carpet, believe it or not. Turns out, my fibula had been dislocating at the proximal end. It was so painful to have out, but even more painful to put back in. So painful in fact that I had to have someone else put it back. It was like my brain wouldn't allow me to put myself in that much pain. I can't count how many times my fibula has dislocated over the years. And was looked over because it wasn't "common".

It was also a physical therapist who said I should consider not having any more children. I had been in to see this therapist for a few months while pregnant with Kyler (my second). Because of the hormones released during pregnancy to help your joints become loose enough to give birth, my ligaments were extra-extra loose. My back was incredibly unstable and giving me a lot of pain so physical therapy was prescribed. Having my second be my last was a hard pill to swallow. I grew up in a big family, as did Cooper and we always thought we would have a big family of our own. My body could hardly keep me in one piece, let alone while carrying another human being. So, at 2 kids, we decided to stop. And a small part of my heart broke. (I still have a hard time walking through Target's baby aisle) 

** It is a MIRACLE I was able to have babies with my sever endometriosis and my EDS. I am FORVER grateful I have this opportunity to be a mother. 

It was after serving an LDS mission and coming home after only 8 months (it's supposed to be 18 months long) that I tried prolotherapy. My SI joint was really bothering me and we wanted to try a more holistic approach. According to MecidalNewsToday, prolotherapy is "a procedure that involves injecting a natural irritant into the soft tissue of an injured joint to promote healing". Basically trying to cause irritation in the joint so that my body would send "healer cells" to try and fix the area. 

This procedure was terrible. They took 2-3 inch long needles filled with that irritant and would place them in and around my SI joint, down to the bone. I had upwards of 100 injections in one appointment. The bruises afterwards were atrocious. I had three of these procedures spread out between the years and was deemed that the benefits did not outweigh the pain of the procedure itself. 


Connective tissue disorders effect all connective tissues, including ligaments, tendons, blood vessels, retinas and many more. Because of the blood vessel aspect, I have to have echocardiograms every two years. (After the initial two in 6 months) Dissections can be a problem in those with EDS (basically your aorta tearing in two) so we have to keep strict and accurate measurements of that and my heart valves. I also bruise incredibly easily because of the fragility of my capillaries. There's always a bruise or two that I have no idea where they came from. 


While working in the neurology department in 2022, I started seeing flashes of light. I was at work one day when an ophthalmologist I had reached out to, called me and said I needed to be seen right away. I left work and saw him, and he said I had a tear in my retina and that it needed to be fixed immediately. So, after some numbing drops and needles to my eye, I had laser treatment to burn around the tear and tack it down. Despite the numbing efforts, it hurt. A lot. But my eye was fixed, and I didn't lose my sight. 

In 2023 I noticed I wasn't able to hear as well as I used to. When hearing tests were performed, it was determined that I had low tone sensorineural hearing loss in my left ear. (Which means I have a hard time hearing low tones, like my poor husband's voice). I was told I could start with a hearing aid in that ear but decided to prolong it as long as I could. One year later, I had another hearing test (I am now in needing of one yearly) and my right ear has caught up to my left, warranting bilateral hearing aids. Again, because of price and pride I have not ordered them yet. I mean, I'm only 32! And I haven't come to the acceptance that this disease has taken yet again, one more thing away from me. (Although they have cuuuuute hearing aid ornamentations.) 

Chronic pain and chronic fatigue are things I am constantly running from. Luckily, I had an amazing primary care provider who realized the amount of pain I was in every day from this condition and referred me to a pain management doctor, who has strongly improved my quality of life. 

As for the fatigue... I have to learn to spend my time and efforts wisely, and store up my energy sources for big events. 

It's been a long time since I was called a lemon car. A lot of years of suffering and of pain, but years of learning to find the good and the miracle it is to have this body. To live in a time and age where medical advancements are amazing and improving every day. 

No one was made perfect. Even Margot Robbie, although she is basically perfection in my book. 

We are taught to love others and find the good in our neighbors, but what about us? We need to love OURSLEVES. You are deserving of love, no matter what your body or mind look like. You are deserving of love no matter what your life looks like. 


Why take lemons and turn them into something different? Why not be grateful for the lemons we have been given and learn to live with them and love them instead of being against them?

As Dumbledore once said, "Happiness can be found, even in the darkest of times, if one only remembers to turn on the light." 

Be the light. Love your body, love your mind. 

Even when you're called a lemon car.  


Sam
















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