My Horizontal Life

What would you do if you literally couldn’t stand up one day?

I never thought in a million years I would wake up sick and be told there’s little chance of getting better. Unfortunately, that’s exactly what happened to me.

I’ve always dealt with back pain. I’ve always dealt with physical pain, period. In my early 20’s I started experiencing a level of back pain that I hadn’t experienced before. The pain would wake me from a dead sleep. It felt like my mid to lower back was on fire. The frequency and intensity of the pain just kept getting worse. I started seeking out medical advice, but every doctor I saw was clueless, or insisted that it was anxiety and depression. I was anxious and depressed, but not for the reasons they thought. I was depressed because I could physically feel my body going downhill and I was so young. None of my friends were dealing with illness. My friends were getting married and having children. It wasn’t until 2008 that I received the diagnosis of Ankylosing Spondylitis. Ankylosing Spondylitis or AS, is auto immune arthritis that can cause fusion of the spine and joints. It’s extremely painful for most people, depending on the severity of their case.

I was relieved to have a diagnosis finally! I wasn’t crazy! I wasn’t making it up! It was there in black and white for anyone to see! Or that’s what I thought. I saw many doctors, some who were outright cruel. I was told that surely I couldn’t have AS because I was a woman and it’s more prevalent in men. I was told I was just a drug seeker looking for pain medication to abuse. I was told that “It couldn’t possibly be that bad”…but it WAS getting bad, very bad. I spent more and more time in bed. I became extremely depressed and started isolating myself from everyone I knew. I

t was around 2012 that I acquired a new symptom that would change everything. One day, I stood up from lying in my bed, and the room was spinning. I immediately had to lie back down. I felt like I was going to faint. That was extremely scary. They tested everything. Nothing was pointing to why I was feeling this way. Years went by and tachycardia accompanied the dizziness. I had to brace myself when going from a lying down to a standing position because I felt so light headed. After seeing many doctors that had zero answers for me, I met Dr. Patricia Salvato. By then I was at my wits end. I desperately needed answers and support. She was so kind to me and promised we would figure out why I felt so sick and fatigued. She sent me to a cardiologist, and an endocrinologist. Neither one could pinpoint the dizziness or fatigue. For a long time, I had no answers. I felt like a walking medical mystery. Finally, Dr. Salvato performed a “tilt test” which is a test they use to diagnose POTS. Postural Orthostatic Tachycardia Syndrome. My body reacted the way it would if there was dysautonomia or dysfunction of the autonomic nervous system. This explained so much. It explained the light headedness, the tachycardia, the dizziness upon standing, the profuse sweating. My body’s autonomic nervous system is out of whack. We don’t know why. POTS can be caused by a previous infection, a virus, or even trauma. I had experienced all of those things in the past decade. Yes! I finally had a diagnosis! Now what???

There’s no cure for POTS or Ankylosing Spondylitis. Only medications for the symptoms. So many “friends” came and went. My condition made them uncomfortable, or they thought I was making it up. How can you fake tachycardia? Or profuse sweating? You can’t! Nobody in their right mind would make this up!

Chronic illness is a very lonely existence. You have to fight for a diagnosis and then you have to fight for support and for people to believe you. If there is someone in your life with chronic illness, the kindest thing you can do is BELIEVE THEM. If you don’t know how to support them, ask how. You might be the only person who does.

“Your sensitivity is not a weakness and you deserve to be embraced exactly as you are”

Khronikally Karly

4 comments

  1. I believe that normal folks can’t get it. At least my family respects my limitations now, after having AS, PsA, Fibromyalgia and several types of Arthritis… I lump all under the AS label because more is really too much for anyone except doctors. Once I was waiting for surgery on my knee and the anesthesiologist stopped by, introduced herself and stated that I couldn’t possibly have AS as I was a female. I gave her my rheumatologists name and phone number and asked her to let my other doctors know. It’s disheartening and particularly painful to have to start below “0” when talking to new medical care. When I moved to Texas 3 years or so ago, I tried to talk to new rheumatologists and had to submit years of info from my previous one, just to see if they’d take me. I gave up. No energy to even be good to myself anymore. At one time I did so very much; now I wonder how many like myself just can’t do anymore.

    Liked by 1 person

  2. Thank you for sharing your story. I had to wait almost 20 years for my diagnosis and had to suffer the thoughts and misdiagnosis from way too many Drs.
    I, too, was diagnosed with POTS. Its wild how AS patients have almost the same story.
    Thank you for representing.
    My heart goes out to you.

    Liked by 1 person

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