Living with chronic pain
I normally wouldn’t write something like this, but I have seen a lot of people who are being diagnosed with chronic pain disorders and I thought my experiences might help someone else.
I was diagnosed with juvenile rheumatoid arthritis when I was 18 months old. At about 5 years old, the doctors informed my family that I had gone into remission. They were hopeful that it would be permanent, but at 7 years old I fell down onto my knee and the swelling never went away.
Growing up with chronic pain is different from being diagnosed when you are an adult, as it is the only “norm” you’ve ever known. Unfortunately, it also makes it difficult for adults to understand the significance of the pain or how badly it can affect every aspect of your life. An invisible illness can do terrible things to a child’s spirit, but with the right support system, children can learn how to cope and succeed in life.
I cannot tell you how many times I have wished to wake up and be able to bend my joints without pain, to turn a door handle or open an already opened jar of peanut butter, or even open my car door without pain. Hell, I’ve fallen down crying on the kitchen floor because I was able to open a jar of pickles by myself. But, there is no point in wishing away the cards I was dealt in life.
Learning to cope with arthritis was no easy task. As each year passed, the amount of days I would go without pain would decrease. By the time I was 17, every joint in my body was inflamed and in pain. My jaw could no longer open, my elbows and knees had permanent joint damage, and I bought my first cane.
- I was diagnosed with Juvenile Rheumatoid Arthritis at 18 months old.
- I was diagnosed with Chronic Migraine Syndrome at 17 years old.
- I was diagnosed with Iritis at 17 years old.
- I was diagnosed with Orthostatic Hypotension at 18 years old.
- I was diagnosed with Endometriosis at 20 years old.
The Endometriosis diagnosis hit me the hardest. All I could think about was that I am 20 years old. I already have 4 chronic pain disorders, why the hell couldn’t my uterus be left alone? I immediately thought of the worst case scenario – what if I could never have children? Marriage, children, a family…they were not supposed to on my mind when I was this young. I should be thinking about work, hanging out with friends, maybe even car payments, but not a family. And then suddenly the sight of a baby would set me off in tears. I didn’t want to make any major decisions about my future – without even knowing where it was headed.
I was defeated.
I mentally mapped out every part of my body that was in pain. Chronic migraines – my head is always pounding. Iritis – my eyes swell and cause pain constantly. Arthritis – every joint that could possibly be infected, has been for the past 3 years. My jaw cannot open because of the swelling, my elbows and knees are unable to straighten fully and are permanently damaged. My neck, hips, back, fingers, ankles…they are all inflamed and in pain. The orthostatic hypotension causes me to not only get dizzy, but causes varying levels of pain in my chest. And now, now I had Endometriosis. Now, even my uterus was in constant, chronic pain.
How on earth did I wake up every morning?
Before being diagnosed, I spent 8 months bleeding nonstop. Now, take a moment to think about the exhaustion that begins to take over after enough blood loss. Every day, I would lose large amounts of blood, experience extreme pain in my lower abdomen and lower back, have hot and cold flashes, experience nausea and vomiting. This was not the first time that these symptoms had occurred. The problem with Endometriosis, is that still carries a stigma of being a disease for middle-age women, or women nearing menopause. I have been suffering since I was 16 from the Endometriosis, but after 5 doctors, not a single one even uttered the possibility of me having it – even though my symptoms were the exact symptoms used to diagnose it. It was due to my age that I spent years of my life suffering in silence, wondering if there was nothing they could do about the pain. I went through every possible birth control type – oral, I.U.D, injectable, etc. Nothing worked, nothing helped… I was hopeless.
When my OBGYN suggested I have a small procedure, in order for him to look into my uterus, along with the lining of my intestines, to check and see if there were any abnormalities, I immediately agreed. It was the first time that I had a doctor take me seriously enough to consider the possibility of something actually being wrong.
During the surgery, they discovered severe endometriosis. I had asked him before the procedure that if he were to find anything, to remove it. There was no way I would go back into surgery again, when they could have done it the first time. On top of that, it was discovered that my intestines had grown scar tissue, which in turn, was wrapped around my liver. Furthermore, my liver had a yellow-ish tint to it, something that isn’t normally seen in people as young as me, it’s often seen in the elderly. Welp.
The days following the surgery were the hardest, but when I look back on it…I needed those days. I needed that time to fully comprehend what happened, and to gain the confidence that was necessary to finally make a change in my life.
A month after the surgery, I graduated from college with my B.S. in Computer Science (before I can legally drink!). I already had a steady job as a Systems Analyst, and I was feeling pretty damn confident about myself. I managed to bring myself out of the depths of hell, and shine.
But just living isn’t enough, if I am successful in my social life, and my mental life…why not be successful in my physical life? I’m done with excuses, it was time to take my mantra, “I can, and I will”, and apply it to my physical life.
So, here I am. Beginning the journey of a lifetime. I’m here to get fit, to get “swole”, and to show the world that my disabilities will NEVER hold me back.