The Day When Everything Changed
(Excise typos please. My symptoms make typing really really hard.)
In about the middle of March, things with my health all collided and turned my life upside down.
I had been having memory problems/brain fog/coordination issues slowly get worse over the last few years, getting more and more intense since July of 2024.
The brain symptoms seemed to get worse every month, especially remembering this I needed to do…or getting lost when I was trying to do them. My morale was getting low and my mind was declining. Even fine motor skills were majorly disrupted and even things like texting became difficult for me. Not only because of my slight hand tremors and difficulty with hand eye coordination, I had more and major typos and would get lost in was I was talking about (verbally too!!!).
Finally, in mid-March I was totally overwhelmed with my symptoms (they felt like low blood sugar or anemia or even concussion symptoms) and felt like I was walking around in a fog and that I was slipping away. So I went to the urgent care, who then sent me to the ER, where the doctor was nice and ran some tests but concluded it was probably a virus. And I felt like I had wasted everyone’s time.
But I couldn’t go back to work because my symptoms were so, so severe.p Things kicked up and I headed to the ER again, where a different ER doctor mistreated me and shamed me and told me I was having a panic attack, referred me to a psychiatrist and NOT a neurologist like he said he would, and discharged me with a prescription for Asprin.
My symptoms only got worse so my PCP ordered an MRI and they found lesions in the parts of my brain that create these symptoms. While my B-12 was low and could be an explanation, there are other symptoms that don’t really appear with B-12.
So, as of right now we think I have an autoimmune disorder and getting tests and appointments has been my life since March. And it feels like when I think I am getting better, I have a flare and feel like I am dying. It’s this cycle I go through and it is scary and so hard on my mind and body.
The first picture was the day I decided to go to the Urgent care where they, also, treated me like I was making things up and I could hear them talking about me in the hallway. But I was too out of it to call them out.
And the picture on the right was the last day I was well enough to physically move my body and exercise. It feels bittersweet to think back to those times because I WAS getting sicker and sicker and I just thought I was lazy or had too much on my plate or was just not good at my job.
But to find the lesions, despite what they meant for me, affirmed that I was right about my body. That I wasn’t crazy or seeking attention or having panic attacks.
And it also opened me up to the plights of other Chronically Ill people and has given me a new insight into accessibility for people with disabilities…because I live with them now.
My life has changed more than I ever thought it would. I can’t do much physically without paying for it with a flare up. It’s hard for me to read because it makes me dizzy, have blurry vision, and even puts me in a brain fog at times. I haven’t worked since March and at this point, it is fairly likely I won’t work again for some time, so money is so, so, so tight.
I sleep constantly and feel frustrated every day that getting my lumbar puncture and more MRIs scheduled has taken a month and a half, with no luck. And I feel pushed to the side. I also don’t see many people. Some people I considered close friends haven’t spoken to me or checked in on me since March…and it hurts a lot. I thought I meant more to them.
I feel lonely a lot.
But I am pushing through. And I love having Lemon8 as a space for me to express my creativity and tell my story and get distracted with all the shopping haul posts I am obsessed with.
So, I’m here. Thanks for being here too.
Autoimmune diseases can manifest in diverse and often debilitating symptoms, particularly when they affect the nervous system. Many individuals, like the author of this story, experience cognitive impairments such as brain fog, memory loss, coordination problems, and even motor skill disruptions. These symptoms severely impact quality of life and complicate everyday activities such as texting, reading, or working. Brain lesions found through MRI scans are a critical diagnostic clue indicating neurological involvement in autoimmune conditions. These lesions can disrupt normal brain function, correlating with symptoms like confusion, dizziness, blurry vision, and fatigue. However, diagnosing these disorders is frequently challenging, with patients often facing dismissive medical encounters or misdiagnoses such as panic attacks, contributing to distress and delayed treatment. The journey described reflects common struggles faced by those with chronic autoimmune illnesses: cycling between flare-ups and temporary relief, difficulty accessing specialized tests like lumbar punctures and MRIs, and the emotional toll of isolation and strained relationships. Key to managing such conditions is multidisciplinary care involving neurologists, immunologists, and mental health professionals. Early diagnosis and personalized treatment plans can help control symptoms and improve outcomes. Support networks, both online communities like Lemon8 and patient advocacy groups, play a vital role by providing a platform for sharing experiences, coping strategies, and emotional support. Accessibility awareness is also crucial, as chronic illness often brings invisible disabilities that are not immediately recognized but profoundly affect daily life. Raising awareness can improve accommodations in workplaces and social environments, ensuring inclusivity. For those experiencing similar symptoms or facing medical system challenges, it is important to seek second opinions, maintain detailed symptom records, and advocate for comprehensive neurological evaluations. While the path can be difficult, fostering resilience and utilizing supportive communities can make a meaningful difference during this life-changing journey.
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