Warrior Wednesday 2/16/22
Meet Hannah-Rayne! She shares her story of diagnosis + living with chronic pain at the age of 21
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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Warrior Wednesday 2/9/22
Meet Brittney! An MS Warrior of 11.5 years- this is her diagnosis story!
Meet Brittney
It was a Wednesday in 2011…
The day started like any other. I woke up, had breakfast and headed to work. I worked at VS in my local mall. It was early November, so things were starting to get a bit busy leading up to the holidays. I was helping a customer who was looking for her size in a certain item. We had none in the front of the store, so I ran to the stock room to check back there for her. What she needed ended up being on the very top shelf, so I had to grab a ladder and climb. I got half way up when all the sudden half of my body went completely numb. It was like nothing I had ever felt before. It wasn't numbness like my foot fell asleep, it wasn't the numbness I had with pinched nerves in the past.
This time I felt absolutely NOTHING. I had to call for help. Once I got down, I immediately called my mom and had her come pick me up. We went straight to the hospital where they told me there was nothing they could do and to follow up with my regular doctor. I made an appointment with him for that Monday. At the end of my appointment on Monday my doctor told me he believed it was just a really bad pinched nerve and sent me for physical therapy.
Three months later I was still doing physical therapy and I still couldn't feel a thing. From the middle of my rib cage all the way to my toes there was no feeling at all. I couldn't walk without help. I had to sleep on our living room couch because I couldn't get up the stairs to my bedroom. Finally, after four long months my doctor decided to send me to a neurologist. The neurologist sent me for all kinds of tests. He almost immediately ruled out pinched nerves, so we moved on to other things.
I had blood tests, cat scans, MRIs, you name it. I was poked and prodded and shoved in machines more times than I cared to count. After a few weeks I went back to the neurologist to get the results of all my tests.
My neurologist told me that my MRIs showed lesions on my spine which he believed to be caused by MS and he wanted to do a spinal tap to confirm it for sure. I was absolutely terrified. 19 years old sitting in a doctors office with my mom hearing the doctor say the words "you have MS." I wanted to throw up.
In that moment my whole life flashed before my eyes. The dreams and visions I had for my future immediately went out the door. I thought my life was over. After it was confirmed that I did indeed have MS, my neurologist and I started discussing possible treatment plans. At the time I wasn't ready to start any medication. I was barely out of high school and wasn't ready to start a medication that I would probably be on for the rest of my life. He agreed that it was up to me and so I starting trying to handle my MS naturally.
Looking back at past doctors visits and medical things I was dealing with in the past, we realized I've had MS symptoms from the age of 13, but none of my doctors ever tested me for things like MS because I was "just too young." They always blamed it on anxiety and told me it was all in my head. So in reality, I've probably lived with this disease much longer than I actually knew.
I have to say, I have been pretty lucky. Here I am 11.5 years after my diagnosis and my MS hasn't progressed much. I've learned to manage this monster pretty well. I've learned to listen to my body and rest when it's telling me to rest. The hardest thing of all was learning to say no. The first few years I constantly pushed myself for fear of losing friends and others close to me because I was being "flaky." But once I realized that my health had to be my number one priority above all else and started making it a priority, everyone else in my life began to put my health first too.
These past 11.5 years haven't been easy, but I've got an amazing support system of family and friends that I would not have made it this far without. I am truly grateful for all of them every single day.
This April we will be doing our 11th Walk MS! It's crazy to think I have lived with this disease for this many years, but I honestly wouldn't change it for anything because having MS has made me appreciate life, love and the little things more than I think I ever would have if MS never became part of my life.
MS has taken a lot of things from me, but it will never take my happiness and I will never allow it to stop me from living my life to the fullest.
Follow Brittney’s journey on IG @brittneystorino
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Warrior Wednesday 2/2/22
Meet Geri! She shares her diagnosis journey of Lupus!
Meet Geri
When I first started to get sick I didn’t tell anyone…
It was a mix of denial and hoping that I would eventually get better. But, every morning I would wake up and feel this radiating pain throughout my body. My joints hurt and everyday tasks became so painful. Soon I wasn’t able to do my makeup, open door knobs, write my name or even point without being in so much. Walking hurt so bad and I was walking so slow that elderly couples with their canes were passing me on the street. The feeling was unreal. I was only 27 and couldn’t fathom what this could be. I also downplayed it and thought this is just what happens when you get older and it will pass. But months went by and it didn’t go away.
In June 2017, I made an appointment with my PCP. I described my pain and she ran some blood work. Everything came back normal and she told me to stretch and exercise more. If the pain got worse to take some Tylenol. I was a little frustrated but didn’t know what else to do and left. A few weeks later, things got worse. I wasn’t able to lie down and sleep properly without feeling a super sharp pain in my chest. Sleeping was a struggle and I started sleeping on the couch propped up with pillows. I had shortness of breath when I walked. I needed to stop every minute just to catch my breath. My legs and feet then became so swollen that my ankles disappeared.
I went back to my PCP and demanded she run more tests because this was not normal. My symptoms were now clearly visible and exercise and Tylenol was not going to help. She prescribed me Lasix and thought that would help reduce the swelling. But that didn’t help. She also scheduled an ultrasounds of my leg to rule out a blood clot. Thankfully there was no blood clot. My legs were still super swollen and I could no longer fit into any of my shoes. Thankfully it was summer and I was able to wear flip flops. But, my legs and feet looked like I was pregnant lady about to give birth. I told my PCP to schedule me whatever tests and whoever because I wanted to get to the bottom of this.
As a patient, I had to advocate for myself. I knew something wasn’t right and I should have been more adamant in the first appointment. Each day my symptoms kept getting worse. Soon I was seeing a nephrologists, hematologist and rheumatologist. I go to a small clinic so all the doctors are in one place which made this easier. When I saw them they already knew my history and I was doing more blood work and getting ultrasounds, MRIs, CT scans, x-rays.
After all the lab work and scans, I got my diagnosis. They had informed me that it was lupus. They tried to explain as simple as possible. My body was attacking itself. My immune system couldn’t decipher the good or the bad cells. So far, it was attacking my heart, my lungs and my kidneys. I remember crying in the doctor’s office when she told me. I didn’t want to accept it. I was in denial and saw 2 more rheumatologists. I made them run the same tests again hoping for a different outcome. But, it was the same result.
No one in my family had any autoimmune diseases. So, this was all a shock. I had so many emotions. I kept thinking why me. What did I do to deserve this? I was only 27 and this was supposed to be my year. I didn’t want to be the “sick” girl. I didn’t want to be a burden to my loved ones. I didn’t want them to constantly worry about me.
There was a lot of trial and error in the beginning as to what medications would work for my body. I also needed to get a kidney biopsy because protein was leaking in my urine. With autoimmune diseases, it’s not a one size fits all prescription. What may work for me might not work for someone else. During my journey I have taken plaquinil, prednisone, cellcept, losartan, lasix and vitamin D. At one point I was taking over 15 pills a day. Thankfully today I am now down to 2 medications, plaquinil and folic acid.
Overall the medications that I was taking seemed to be working. I no longer had protein leaking in my
urine, I no longer felt any joint pain, didn’t have any shortness of breath, etc. But, not all of my labs were
normal. I also still felt very tired from time to time. I also noticed that I super sensitive to the sun and
the brain fog was the worse. My rheumatologists explained that I had pretty much plateaued and
this I guess was “my” normal.
Being a lupus warrior has been a whirlwind of an adventure. Never in a million years would I have thought that any of this would have happened to me. But, everything happens for a reason and I have adapted to it. Lupus has affected my heart, lungs and my kidneys. It has also affected my weight, my memory, my hair, skin, diet and my overall day to day activities. I was wearing masks even before COVID was here. My immune system is very fragile so any infection could send me to the hospital. It definitely is a hard journey to endure, but with the right medical team and support system it is possible.
Social media has also been a great avenue to meet other warriors who have lupus or other autoimmune diseases. When I first got diagnosed, I joined a few facebook groups and asked a bunch of questions and loved reading about other peoples’ experiences. It was great knowing that I wasn’t alone. As much as I love my family and friends, I sometimes felt that I couldn’t be 100% with them. They were healthy and I didn’t feel that they could really relate to what I was going through. My fatigue is not the same as their fatigue. They weren’t experiencing brain fog and taking so many pills a day. Even though these people online were strangers, I still felt very connected to them. I think that’s why I started my blog and Instagram page. I was at a stage now in my life where I fully accepted my diagnosis and wanted to embrace and interact and share my story with as many people as I could.
Follow Geri’s journey on IG @everydaylivinglupus
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Warrior Wednesday 1/26/22
Meet Karolīna! She reflects on the last ten years of living with Multiple Sclerosis!
Meet Karolīna
When I was thinking about how to start this, I realized I have entered the 10th year since being diagnosed with MS. And what a journey it has been.
My first symptoms were quite minor. Or at least that’s what I told myself. At around the age of 15 weird things started going on in my body. Burning hands, burning legs, dizziness, pins and needles... When I experienced the first foot-drop, I was in 10th grade and figured I probably slept weird and had pinched a nerve. I went to my GP a couple of times, asking her to check if I’m okay. She said I was so I figured it’s some sort of normal.
Then one night I woke up from an excruciating pain in my head and left eye. That’s how my journey to being diagnosed with MS started. Almost 3 years after my first symptoms. I was 17 when I had my first MRI. My dad came with me to both the MRI, and my MS neurologist’s appointment. And, honestly, I think that’s why I felt like the announcement of the diagnosis first didn’t affect me at all. Because the doctors mainly just talked to my dad, assuring that his kid will be fine. That’s all I was told, too. That I’ll be fine. I’ll just have to be on medication, that’s all.
BOY WERE THEY WRONG! (insert me laughing right now)
My first medication was three-times-a-week injections. My college mini-fridge, full of syringes, that sort of stuff. The first three years were kind of okay. Yes, I eventually went down the rabbit-hole of self-pity and depression for a while. Lost friends, and bailed on my dreams. It was very scary, and still is sometimes. I am here, writing this, only because I had loved ones around me who didn’t let me give in to my illness.
Flash forward to 3 years with the fun interferon injections - they stopped working for me. I was about 22 years old and I had a relapse episode every month for the better part of a year. I was miserable. But my doctors’ hands were tied by the laws of my country, which didn’t let her put me on new medication unless I had 3 new symptoms in 6 months. When I finally got to the point where I was legally allowed to switch medications.. I had been paralyzed, fully bedridden, and by the end of it, done with fighting for my life every single day.
MS can be absolutely horrible and I didn’t want to see where else it could get me.
After finally changing my medication, I immediately went into remission, and was basically as good as new! I know it won’t be like that for everybody, and I know I am extremely lucky to be as perfectly healthy as one can be, considering the situation.
My previous doctor called me one of her ‘snowball girls’. I am one of her patients who has a giant, snowball-like lesion in the middle of her brain. On top of that, I like to tell people I am ‘Daughter of Thor’. Why, you ask? Because the other giant lesion is in my spine - one that looks like a large lightning bolt has struck right down my spinal cord!
And my dreams? Yes, I may not be allowed to join the military and fly a fighter jet.. But I ended up being a reporter and got to write about the same fighter jets that I would’ve loved piloting.
I came up with new dreams, and new goals. Because at the end of the day - having to adjust to your ‘new normal’ is really not the worst thing. I just needed to give it some time and learn to appreciate everything else that I am lucky enough to have. I don’t know what I have in store for the next 10 years, but I’m sure I am not going to give up ever again!
MS is a beast, but so am I!
Follow Karolīna’s journey on Instagram @imlinarivas
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Warrior Wednesday 1/19/22
Meet ARC’s Wednesday Warrior- Kylee! She shares her diagnosis journey + how MS has changed her for the better!
Meet Kylee
March 9th, 2012, a day that will forever be burned in my mind. I woke up to the realization that something was desperately wrong.
I had lost all my peripheral vision on my right side. My right eye felt funny, like it was swollen. I thought that maybe it was an ocular migraine; I sincerely hoped it was just an ocular migraine. I got up, hoping that it would pass as I started my day. It didn’t pass. In fact, it got worse as the day went on. My right eye started to bounce as if something was inside the socket preventing it from moving where I needed it to. Later, it slowly stopped tracking with my left eye. With the bouncing and the lag between my eyes, I started to get extremely nauseous.
I called my mom and told her what was going on; I was living with her during one of my college breaks. She said she would be home as soon as she could. But until she got home, I was utterly and completely alone. As the day went on, I tried not to move much because it would make the nausea worse. But when I had to move, I noticed that I was stumbling. Tripping and falling into walls. I thought “what is the matter with you, Kylee? Get it together”. But I couldn’t. I had lost any semblance of balance. This is when the fear kicked into high gear.
Once my mom got home, she helped me to the car. We figured, since it had started with my eye, let’s go see an eye doctor! That was the first time I heard “possible brain tumor”. He, very kindly, told us that he couldn’t do anything to help and sent us to my primary care physician. When we got there, I told my mom “I’m 21, I can go back by myself”. I wanted to seem brave, even in the face of terror.
When my PCP came in to talk to me, it was the second time I heard “possible brain tumor”, along with 4 other terrifying diagnosis. None of which included Multiple Sclerosis. He emphasized how quickly we needed to act: get blood work, order an MRI, and run about a thousand other tests. All of which, in his words, would cost about $15,000. I panicked and completely shut down. When the nurse came to draw my blood, I told her, with tears in my eyes: “I think I need my mom”. She let me go get her and the testing ensued.
I can distinctly remember the sound of the phone ringing when I knew they were calling with my MRI results. “Normal”. Nothing felt so relieving and so disappointing as that one word. I had been living with the same symptoms for over a week. Unable to drive, unable to walk, unable to really see.
My mom, bless her angelic heart, was keeping my family up to date on what was going on. After she told my aunt what the results of the MRI were, my aunt suggested getting the MRI itself to send to her. You see, her brother-in-law is a neuroradiologist. She wanted him to look at it to confirm that it was in fact “normal”. While we waited for him to review my scans, I was sent to an ophthalmologist, since my first symptom was my eye. This was the first time I heard Multiple Sclerosis has a potential diagnosis. I shut down again. I knew people with MS. I had done a report on MS. I knew what the battles were; at least I thought I did. Suddenly “possible brain tumor” didn’t sound so bad. It was treatable, curable even. But we still didn’t have answers.
The greatest gift from God, through the whole diagnosis process was my aunt’s brother-in-law. He told my aunt “she should probably go see a neurologist. There’s a spot that could be nothing, but it could be something”. Even though he couldn’t be specific, we knew that this was the game changer.
Thankfully, at this point, a referral to a neurologist was already in the works. When I finally got in to see him, it was almost April. I had been living with these symptoms for almost a month, and I was DONE.
Once I got in with the neurologist, things started going pretty quickly. I got a second MRI and was scheduled for a lumbar puncture (which was absolute hell, TBH). On April 9, 2012 it was confirmed that I, in fact, had Clinically Isolated Syndrome. Since this was my first official flare, it wasn’t technically considered Multiple Sclerosis yet. They started me on medication in the hopes that I wouldn’t have another flare. But I knew better. I knew my body. I knew it was just a matter of time.
That day, it felt like the rug was ripped right out from under me. That my life was now tainted and somehow mattered less. I had all of these beautiful dreams for my life that shattered in an instant. As dramatic as it sounds, I honestly thought my life was over.
In October of 2012 after another flare up, I was officially diagnosed with Multiple Sclerosis.
It’s been almost 10 years since that 21 year old thought her life was over. It’s been 10 years of growing, learning, crying, laughing, yelling at God, and pleading with Him. I’m almost 31 and my perception of my disease has done a 180 change.
My MS went from being the enemy to a deeply loved life long companion. This journey went from being agonizing to being one of the most sacred parts of my life. It has changed the way I view the world, it has shown me beauty that nothing else could, it has changed the way I see myself.
If I could go back, I would hug that terrified 21 year old and tell her “you hang on, don’t you quit. It’ll be better than anything you ever imagined”.
*Photo of Kylee from 10 years ago*
There are still days where I get annoyed, frustrated, emotional, and even angry. There are days where I feel immense gratitude, love, support, and dignity. I’m so grateful and blessed to say that, while at the beginning the hard days out numbered the good ones, things have changed. I have changed. I do my best to create a positive environment and relationship with my disease not only for myself, but for others as well. I try to use my Instagram to share light and love, even in the darkest of times. And now? The good ALWAYS outweighs the bad.
Follow Kylee’s journey on Instagram @kyleeann1
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Warrior Wednesday 1/12/22
Meet ARC’s Wednesday Warrior- Clare! She shares her diagnosis story + insight to why she began her podcast!
Meet Clare
This is the beginning of her story…
After a day of gardening, I was washing my hands at the outdoor tap. Bent at the waist, I realized I couldn’t get back up. I crumbled to the ground, turned to my husband and said, “What if it’s MS?”
At this stage, I had no reason to think that. I was working with a physiotherapist to improve my lower back pain, to help with my ‘weird walking.’ I was 32, with a 3-year-old son, my background was in outdoor education, where I led multi-day hikes for a living. I was working as a relief teacher and had just finished owner-building our home.
I was going to fix my issues and get back to regular programming.
When I finally went to my GP, he immediately referred me to a neurologist - my classic MS gait pattern was a dead giveaway. The neurologist told me that it’d either be a benign brain tumor or MS. To find out my fate, I had an MRI and waited six weeks for the results. Those weeks were hard.
When I was finally given the results, my husband and I had just applied for a position to run an off the grid outdoor education centre in Gippsland, Victoria. Our dream was to move to this camp with our son, spend two to three years living in the bush, accessing our home by flying fox over a river and working with young people to connect them with nature - not having to deal with a debilitating chronic illness.
We were successful in our application and accepted the position. I didn’t have time to acknowledge or process my diagnosis. So I told very few people, and went to run the education centre. During our two-year contract, I looked everywhere for secret support, I wanted to learn about my disease on my own terms without anyone knowing. I wanted to know what this diagnosis might look like for the rest of my life. I wanted to see others with MS living their ‘best life’ and I wanted to see people I could relate to living with MS. I looked for podcasts that I could listen to while feeding the chickens, while working in our 100 square meter garden bed, while sweeping the verandahs around our pioneer style homestead but found nothing. Denial was my best friend, it fueled me and kept me going. But only for so long.
Throughout our contract I noticed that the long days, the stress, and the far distances I was walking were seriously impacting my symptoms. I noticed more days where I was relying on my hiking poles. More days where I struggled to walk from the homestead to the outdoor kitchen. More days when my husband would push me in the wheelbarrow from the main property to our own cottage. I was exhausted, but I blamed the camp, not my illness.
I thought that finishing up at the education centre and returning home would improve my symptoms. My husband was tired too, the job was all-consuming. We thought that once we’d finished up and had some time to rest, things would return to normal.
And while I watched as my husband’s energy returned, mine did not.
Grief hit me like a freight train. I was consumed by it. Angry with everyone around me and also sad. Why did this have to happen to me? I was fit and healthy, I ate unprocessed foods, I went hiking. It was all so unfair.
At around this time, I began to embrace local therapy supports, both physical and emotional. I started seeing an amazing physiotherapist who showed me that by doing slow, specific exercises, I could start to see a reduction in my physical decline.
It was at one of my gym sessions almost three years after my diagnosis, where I was reminded of my need to hear others’ stories when I was first diagnosed. By doing regular gym sessions, I had taken control over my worsening symptoms and had started feeling more at ease with my diagnosis. I now felt like I had the headspace to think about creating something that would help others in a similar situation to myself.
With little no to experience in podcasting, and no connections with people who lived with MS, I decided to create my own podcast, MS Understood, where I have conversations with people from all over the world and from all walks of life who live with MS.
Initially, I found people on Instagram by searching #multiplesclerosis. As the number of episodes I released increased, people started reaching out to me wanting to share their own stories or suggesting people I could contact. I always felt honored when people would say yes and so generously give their time, telling their story for me to share.
I created MS Understood because it’s what I needed when I was first diagnosed. I assumed and hoped that it’d resonate with others in the same position. Thankfully, it has. People love listening to this podcast, because it makes them feel less alone and it reduces the stigma around living with MS.
I love telling all kinds of stories so that all listeners can find something that they can relate to, and each interview has taught me something. I’ve learnt to take ownership of my medical journey, to reach out to different medical professionals, to keep asking questions about how I’m feeling and why that may be.
Above all else, I’ve learnt that there is hope.
In the podcasts, we talk about the hard things, but we also talk about the good
things. A lot of people tell me that their lives have changed for the better since their
diagnosis. They have been given the wake-up call so many others don’t get and are
now living their life unapologetically.
If you’d like to listen to the MS Understood podcasts, you can find them on
Spotify or Apple Podcasts by searching ‘MS Understood.’
If you’d like to find out how you can share your own story with Clare and be
featured on the MS Understood Podcast, you can reach her via her website:
www.clarereilly.com/contact
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Welcome to the ARC Fam
Join the ARC Family! With a Warrior Wednesday Spotlight!
Welcome! A Rose Collective is a space for YOU, Warrior! I’ve wanted to open my website to publish Warriors from all over the globe. To publish YOU!
So that you may share your stories, your struggles, your fight, your perspective. Together we can (and will) ignite inspiration across our communities.
Every single one of you reading this has a unique gift- that is being YOU. No one is you, no one has your light. No one can walk in your shoes, can be you. And THAT is magical! That is a gift! Because of this, you have a very unique story, perspectives to share, and who knows- that very perspective could help someone else feel less alone.
This idea to open up ARC came to me when I was reflecting on how I started to publicly share my journey- I shared with the intention of helping at least one person feel less alone. Immediately after going public, Warrior after Warrior shared similar feelings and what I intended to help others, ended up helping me in the process as well! So to further this idea, to widen this platform, to give a platform to other Warriors- here we are with ARC Family!
I’m excited for this extension of A Rose Collective, and I’m happy you’re here! Whether you’re here to learn, get inspired, or share your story. Let’s grow together!
All my love forever + always,
Ashleigh Rose
Meet ARC’s First Warrior! 1/5/22
Meet ARC’s first Warrior, Mikenna! She shares her thoughts + feelings during her Multiple Sclerosis diagnosis 5 years ago!
Mikenna!
This is her diagnosis story…
“I don’t remember the exact date, only that it was late November, maybe even early December.
What I do remember is going about the rest of the day like nothing had changed. Knowing if anyone at work were to ask “How are you?”, I would’ve crumbled. I had that lump-in-your-throat feeling, the one you get when you don’t want to cry during a movie. I remember acting as if nothing was different, although, not much really was. I’d known for at least 2 years prior that something wasn’t right. I remember the manilla envelope I was handed on the way out of the hospital. In it: tens of thousands in potential medical expenses. It sat on my passenger seat for days.
My official journey to diagnosis started with optic neuritis the previous fall. I honestly thought I was wearing a damaged contact lens or had scratched my eye. But then it got worse, quite quickly. In a whirlwind 72 hours I had: lost almost all my sight in my left eye, a trip to the optometrist, a visit with my GP, two emergency room visits, and an opthaneurology appointment. Two days later, I was a patient at the MS clinic under the preface that, “it doesn’t necessarily mean you have MS”, and zero explanation as to why else I would be there. To say I was frustrated, and very confused, would be a vast understatement.
3 MRI’s, two clinical trials, dozens of hours in labs & clinics, countless times being poked and prodded, and a year later—I got the diagnosis. It certainly wasn’t a movie moment. I left feeling confused over whether or not I actually had just been diagnosed. The words “there’s strong indication that it could be MS”, were not solidifying or reassuring. I’m sure my neurologist saw the absence in my eyes when she decided to gently place her palm on my knee to bring me back to reality. We made brief eye contact, my vision blurred with welled tears that I hadn’t yet allowed to course down my cheek, and in that moment, I remember realizing that very few things in my life would ever be certain again. It felt like less than 5 seconds later I was being rushed out the door, envelope in hand, and the five stages of grief began.
For at least two weeks, I sank into a state of denial. I refused to talk about it or tell my inner circle, despite my partners’ gentle, daily attempts to open that envelope. Until one night, we did. We opened it together. He read the papers as I felt myself retreat inwards and fight back anymore tears. Later that night: anger struck. I locked myself in my spare bedroom, laid on the floor, and sobbed uncontrollably. I shook until I was nauseous. I screamed into a pillow, “Why me?”. I played a mental slideshow of all the trauma I had already overcome, and all I could think was that I had nothing more to give. This is not a fight I can win. I felt truly defeated for the first time in my life, and things were really dark for a really long time.
I felt like I had nothing more to give. For the first time since I was a depressed, hormonal 17 year old, I seriously thought about dying. About removing the burden from my partner, from my family, from myself. I weighed the pros and cons. I was about to embark on the toughest battle of my life and it had no end date and I didn’t even know what I was fighting for. I ran through every possible immoral and unethical thing I had done in my life that would give me such horrific karmic retribution. I bargained with any God that would listen. I asked the universe, “If this is a lesson, what more is left for me to learn?”
2022 is year five, and I still grieve the life I once envisioned for myself. My grief is not linear or chronological. It’s constant and omnipresent. I grieve what I may lose, even though I don’t know what it is just yet.
Year 5 is the year I conquer that acceptance stage though. It’s the year my purpose and my journey overshadow my anger, denial, and depression.” -Mikenna Ritchie
Follow Mikenna + her MS journey on Instagram @mikritch
Want to join the ARC Fam yourself? Connect with me below + let’s get your story out for others to read + resonate with!