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Meet - Ana Macario

Missouri, USA

When were you diagnosed with MS? August 2022

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

The beginning of my journey with MS was incredibly stressful and complex. At the time, I was living in Guatemala and close to finishing my studies at the university. During the last week in May, I started losing my sight gradually over the course of a week. After visiting an ophthalmologist and undergoing various tests, I was quickly referred to a neurologist and asked to undergo an MRI.

On June 3 at 3 PM (I will never forget the day, the time, the place or how I was dressed), I received the devastating news that I had a tumor located in the center of my brain that was inflamed. After considering various treatment options, I opted to travel to Miami, Florida for laser surgery. The surgery was scheduled for the morning of August 24. Although I was filled with hope and excitement leading up to the surgery, I was ultimately told while lying on the stretcher that it wasn't a tumor, it was multiple sclerosis. Shockingly, the neurosurgeon didn't refer me to another doctor, nor did he provide me with any medication or resources.

On October 12, I experienced a second outbreak, which marked the beginning of a much more complicated and challenging journey. I was admitted to the hospital where I underwent many tests that confirmed my diagnosis of multiple sclerosis. They provided me with medication to manage my symptoms until I could see a specialist.

Currently, I am still waiting for a scheduled consultation at a specialist center in July. My experience with multiple sclerosis has been incredibly overwhelming, both emotionally and mentally exhausting.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

I currently experience persistent symptoms such as tiredness, fatigue, sensitivity to light, headaches, back pain, and numbness in my hands and legs. In order to manage these symptoms, I prioritize rest and avoid pushing myself too hard. I rely on a mommy walker and wheelchair when necessary, and I make a conscious effort not to push myself too hard in order to avoid exacerbating my symptoms. I try not to act brave because at the end of the day, I only hurt myself more.

#3: Who/What has been your most important support system?

Initially, my mom and sister were my primary support system, but I've encountered significant challenges with them not fully understanding the difficulties I face. Sometimes they look at me and think im "fine" and think that I am already better, but I am not. Despite outward appearances of being "fine," my struggles persist. While my mom remains a part of my support system, her level of understanding and support is currently at 60%.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I do not use a wheelchair or walker every day, but I do resort to them when I am very tired or when the pain is unbearable. I also use a stool when I take a bath; because, I do not feel confident about my strength and balance.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

From my experience with MS, optimism came automatically, more like a survival instinct However, given the relatively short amount of time that I have been living with the disease, my mental health has taken a nosedive! I am now actively working on rebuilding my mental health and restoring my sense of willpower, self-esteem, positivity, and will to live.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

You feel that a big part of you died the day you were diagnosed, you feel that you are not the same even though everything around you tells you otherwise. Believe me, I understand YOU! I feel the same way sometimes. It is important for you to allow yourself to feel the pain and loss, rather than trying to ignore it, because ignoring it will only lead to even more intense suffering. Remember, you are capable and deserving of happiness and all the beauty life has to offer. Although life may not look the same as before, it can still be beautiful, even more so. You are not alone in your struggle, and it's crucial to keep moving forward, even if just one second, one minute, one hour, or one day at a time. Things will get better, but you must be willing to look at them from a different perspective.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

Check out my blog @frecuencia_em_and_me on Instagram. I created this space to connect with others and share my story without feeling overwhelmed. I had previously tried various pages and apps, but found they only caused me anxiety and even panic attacks. On my blog, I exclusively share my personal experiences, thoughts, and insights related to multiple sclerosis and how it impacts both my daily life and mental health.

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