Warrior Wednesday 2/16/22
Meet Hannah-Rayne
My name is Hannah-Rayne Plummer and I live with chronic pain.
My pain symptoms began a long time ago, when I was in elementary school. I had hip joint issues and my ankles rolled in causing the need for shoe orthotics to keep my body in line. I did physical therapy for 6-8 weeks off and on over the course of my middle school and high school years. I saw a chiropractor every other week for as long as I can remember, but my body never held the line it was supposed to.
The spring of 2018 I was really getting into being physical and athletic. I have never been one to choose to play sports or run around, but my family played in an Ultimate Frisbee league and I joined as soon as I was old enough to be on the team. I played 3 or 4 seasons with the team before 2018 where I discovered a sharp pain in my lower back whenever I put pressure on my right leg. I couldn't run anymore. I took more trips to the chiropractor, but we couldn’t figure out why my body stopped holding its line and something was always out of place in my hips, SI joint, and spine. My parents and I decided I needed to see a sports and medicine doctor.
During my first couple of doctor’s appointments it was a symptom review and an x-ray or two. My dr. couldn’t find anything that was causing the pain; no bulging discs, nothing herniated. I have acute scoliosis, but he didn’t think that was the cause because of where my spine is bent. We set up an MRI so they could take a different look at what my body was doing. The first MRI I had was specifically focused on my hips because that’s where most of my pain was. The image that came back showed high levels of inflammation in my hip joints and so my doctor suggested we do a Cortisone Steroid Injection to reduce the swelling and see if that simply fixed the issue and it went away… It didn’t.
My pain was back, no longer sitting in my hip joints causing all kinds of discomfort, I had pain in my low back. Still mainly on the right side of my body, but worse than before. When I took a step, it hurt. When I sat for too long, my body hurt. When I woke up in the morning, I was stiff and sore. When I walked too much, my back ached. I couldn’t run, dance, jump, pivot, etc without some part of my body aching.
MRI number 2 was taken during the late summer of 2018 and the image was of my low back and SI joint. In this image there was more inflammation than before and again my doctor suggested a Steroid Injection to reduce the swelling and hopefully it wouldn’t come back. It did.
I had an EMG test done on my right leg due to the level of numbness and tingling that I kept feeling during flare ups. The test came back normal and I wasn’t diagnosed with any form of nerve or muscle disease.
The fall of 2018 was one of the worst seasons of my life. I woke up everyday never knowing what my body was going to do. I purchased a walking cane at the age of 18 and boy did I use it. On the worst days I used crutches or simply tried not to move all day long. At night time I would wake up ‘stuck’ in one sleeping position and would have to call my dad downstairs to help me reposition, go to the bathroom, take meds, or whatever else I couldn’t do on my own. Due to the increase in pain symptoms, my sports doctor referred me to a specialist and I went on my way to get a real diagnosis and remedy.
Fall 2018 I was diagnosed with Ankylosing Spondylitis by a rheumatologist who called me a ‘textbook case’. After doing blood work and finding my blood to be HLA-B27 positive he said it was confirmed and I could begin being treated by medication.
Ankylosing Spondylitis can be defined as - “Axial spondyloarthritis (axSpA) is a type of arthritis. It mostly causes pain and swelling in the spine and the joints that connect the bottom of the spine to the pelvis (sacroiliac joint).” Other joints are affected as well. It is a systemic disease, which means it may affect other body parts and organs long term. Radiographic axSpA (also called ankylosing spondylitis or AS) includes damage to the sacroiliac joints and spine that can be seen on X-rays, but I didn’t have any visible damage other than an acute scoliosis in my mid back.
This definition is full of big words that not everyone understands nor can they really know what it is like to live with AS.
My definition of AS is this-
My body thinks my joints need protection so it creates inflammation as a safeguard where it isn’t needed. Inflammation/swelling then causes the immobility of my spine, hips, SI, and surrounding joints which long term causes fusion of the spine and rounded posture; short term it causes pain, lack of flexibility, and general soreness and discomfort
AS is a chronic illness because it can’t be cured and it doesn’t go away. My body swells when it isn’t needed and without cause meaning I always have some level of inflammation going on.
The inflammation in my spine worsens due to high physical activity, eating foods that produce inflammation in the body, cold weather, sleeping, and lack of movement. So you see, it causes an issue because if I don’t move, I am in pain; and if I move too much, I am in pain. I can’t eat foods that a healthy person eats because my body doesn’t process and digest them properly. My siblings eat whole wheat bread for lunch and they digest and continue going on with their day. If I ate whole wheat bread, my body would digest it incompletely causing a spike in my inflammation levels and knowing my symptoms; I wouldn’t be able to walk normally the next day or next week.
There is no cure for AS, but there are different treatment options. Taking a prescription medication daily is a treatment option, but this doesn’t last long term without the dosage going up or your body becoming immune to the treatment. You can change your diet and lifestyle to better avoid a flare up. Long term a person can go into remission which is when your symptoms aren’t present but the disease itself is still sitting in your body.
I live with what I call, ‘baseline’ symptoms. These are symptoms that are always present and do not go away. Some of my baseline symptoms are- achy hips, tingling ankles, morning stiffness, brain fog, shin swelling, red knee joints, costochondritis (another chronic condition) and general fatigue. I feel or experience these everyday and they have become my new ‘normal’. When these symptoms become worse or I develop a new symptom that I feel or experience it is what I call a ‘flare-up’.
A flare-up is defined as ‘a sudden outburst of something; usually violent’. My body is at war with itself. I categorize a flare-up as the period of time when I can physically feel my symptoms and it keeps me from living a ‘normal’ life. I have experienced many types of flare-ups and have begun to see patterns of what helps and what doesn’t, as well as the causes and how to avoid each flare. The sad truth is that I never know what my body will do in the morning when I wake up.
I am 21 years old and have been living with diagnosed chronic pain for the last 3 years of my life, and will continue to live with it forever.
Follow Hannah-Rayne’s journey on IG @_chronically_loved_
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