Health

September 23 2023

Emily Grace Romero

sclerounited_ppavrw Issue 5 Colorado, Health, Parent, United States, Wellness

Colorado Springs, Colorado (United States)

EMILY GRACE ROMERO

Scleroderma Stories Issue 5

Please introduce yourself

My name is Emily Grace. I am a mom of three daughters who are 17, 18, and 21. They’re my light. They really helped me push through everything. I’ve been married to my husband for 25 years. We also have our dog, Hank. He’s an 8-year-old blue heeler, and he’s the spoiled baby of the family. We live in Colorado Springs, Colorado.

What were your first symptoms of scleroderma?

I was about 26 years old, around 2008. My kids were very little at the time. I was a woman who thought I could do everything. I was trying to hold a full-time job, be a family person, and then go to school. I wanted to try to get a degree in physical therapy and become a therapist.

But slowly, my body started giving up on me. I started noticing some really weird symptoms. For instance, my fingers just started going purple all of a sudden. My younger brother was studying to be a paramedic at the time, and my symptoms really intrigued him. So we started paying attention to it more.

It was just weird because my hands would literally look like a Smurf or they’d be quite white; there was just no blood flow. That was the first symptom. I was trying to take a shower one day when my joints started to really hurt, and then I fell. When I tried to get up, I didn’t have enough strength. It was the first time in my life something like that had happened, and it really scared me.

A photo taken in 2008, the year that Emily Grace was first diagnosed with an autoimmune disorder

Could you please describe your journey toward diagnosis?

I visited a rheumatologist, who ran a blood test that came back positive for an autoimmune factor. The thing is, my father has Multiple Sclerosis, so I already knew the genetic factor was there. However, I was diagnosed with rheumatoid arthritis at first. I chalked up my symptoms to stress because I was going through a lot then. I kind of had a traumatic childhood as well. I kind of felt like it all came to a head at that age, and it was just like my body was done. It didn’t want to do anything anymore.

The rheumatologist assured me that I’d be taken care of and that it was rheumatoid arthritis. My primary care doctor put me on methotrexate. Looking back now, I wish I hadn’t taken it. The meds basically kicked me into an overlapping autoimmune disorder. Over the course of about five years, I was diagnosed with lupus as well as rheumatoid arthritis.

I was trying different doctors, and one of them suggested scleroderma. I’d looked at the pictures and seen what it does to the skin, and it freaked me out. I thought that there was no way that was it; this guy was definitely wrong. Frankly, I was kind of offended. So I quit seeing him for quite a while. But everything else wasn’t working, and the other diagnoses just didn’t add up.

I was seeing a hospital specialist who kept trying to put me into a study. The study involved trying this new biologic agent that had a 50-50 chance of working for me or causing major damage. My children were so small, and I didn’t want that to happen to me.

I’ll be honest with you, I was a bit mistreated by this specialist and his bedside character; everything about him just really turned me off. He scared me. I was trying to tell him that I was having a major allergic reaction to the medication, and he basically told me to deal with it. That’s when I decided to stop seeing him. I went back to the regular guy after that.

We ran some more tests. He told me that he didn’t see me having the outside skin version of scleroderma, and that he was afraid that what was happening was systemic. He also said that I could have chronic symptoms of CREST. Once he began to explain CREST to me, I couldn’t deny it anymore. I was on prednisone for a really long time. I think that, combined with my bad habits of just trying to overwork myself as a mom and drinking Red Bull all the time, did some major damage to my stomach.

I didn’t know how to live. I was literally just scraping by every day trying to figure out how to get up and take my kids to school or do what I needed to do. But my faith got me through a lot of it.

2016 – at this point, Emily Grace had spent 8 years on steroids/pharmaceuticals struggling to find answers.

How have your symptoms changed since then?

To explain that, I think it’s important to talk about some of the other stuff I was going through in life back then. Unfortunately, my husband’s mother passed away from breast cancer. I was very close to her, and we were kind of like the story of Ruth and Naomi in the Bible. She taught me everything. That whole thing was really heartbreaking and hard to deal with. So the emotions of that and also having the disease took quite a toll on me. I ended up going from 150 to 110 pounds in 45 days.

It was super scary because before that, I was dealing with my image and feeling ugly because of how fat I was getting thanks to my meds, and then it was almost like I slept all my weight off – which sounds amazing at first, but it really wasn’t, because my stomach was hurting a lot. I couldn’t eat food anymore. It was literally like something just grabbed my stomach and crushed it. I had esophageal problems as well; it was just a really rough time.

Fast forward three months to January 2018. I came home from church one day, walked through my door, and everything went dark all of a sudden. I couldn’t see anything. I could see my husband from one side of my face, but not the other. I sat down, he got me some water, and slowly the vision started coming back. I went to work the next day not thinking anything of it, but then my eyes were hurting, so my boss sent me home.

I ended up going to this small town eye-care doctor, and he thought I had a mini stroke. He looked behind my eye and he said “Something’s happening. You need to go to the ER.”

I’ll be honest with you, I was done with being poked and prodded and drained of my blood all the time. I did not want to go back. I had to go though, because he was like, “If you have a stroke tonight, I don’t want to be responsible to your family.” So they rushed me into the back. Turns out, I did have a mini-stroke – a clot behind my right eye.

When the blackness came at first, it was terrifying. But thankfully, the blood flow returned, and I survived. However, during that ordeal, they discovered I was also suffering from gastroparesis. This diagnosis was verified during a visit. I also had a broken heart and a vein issue where the blood wasn’t flowing correctly, causing chaos in my body. In 2018, after experiencing the mini-stroke, I was given the option to have a filter placed in my heart to prevent future strokes. I was taking a total of 21 medicines, but the side effects were taking a toll on me. I was miserable, experiencing skin issues and even falling asleep while driving.

This was the daily regimen that Emily Grace was on before a mini-stroke and moment of desperation

What inspired your pursuit of holistic and functional medicine?

After the mini-stroke, I decided I had enough, and my husband and I made a life-changing decision to move to the beautiful mountains of Colorado to escape the emotionally distressing environment we were in. We held onto our faith and I continued to teach on Sundays while also finding a job in the prayer line, which was a source of encouragement. Although I didn’t stay in that job for long, it provided me with a boost of energy and support.

While on this journey, I encountered a man in the church who had a sick niece with a suspected autoimmune disorder. As someone with personal experience, I cautioned him against the long-term use of prednisone and urged him to explore natural nutrition. This accidental encounter led me to discover a holistic approach that focuses on the mind, body, and spirit.

With support from my community and aligning my mind and body, I started taking high-quality multivitamins and protein shakes, since I had difficulty eating due to gastroparesis. Unfortunately, the hospital misdiagnosed me as bulimic, causing further distress. This experience solidified my desire to pursue holistic and functional medicine that addresses the root cause of problems. Now, after years of pain, fear, and tears, I realize they weren’t wasted. I’m grateful for people like you who have taken the time to listen and help me.

“Feeling much better and started my career as a Holistic Wellness Consultant and Brand Ambassador with the company that helped me get my life back!”

What are your goals for the future?

Writing a book about my story is a goal of mine, and your support is invaluable. I’ve transformed my life by maintaining a positive mindset and prioritizing my health. While I’m not perfect at it, I am passionate about my supplements and the positive impact they have had on my life. They have also provided financial opportunities, as I can now impact others and share their stories, just like you’re doing.

It’s not about me, but about helping people who are struggling and unsure of what to do. If we can come together, listen to people’s symptoms, and be honest about our limitations, we can empower patients to make informed decisions about their health. Ultimately, our lives are in our own hands, and by finding a middle ground between medical expertise and patient autonomy, we can reduce unnecessary suffering.

I believe that my plans and dreams, which I outlined 17 years ago when I was your age, still hold significance. I wrote about my aspirations and desires during my college years, envisioning my life 10 years ahead. Although it has been 20 years since then, I have already accomplished many of the things I set out to do. This realization has been both intriguing and helpful in setting me on the right path.

I want to encourage young women to discover their true identities and not lose themselves amidst various influences and pressures. It’s essential to find out who you are and pursue your dreams. Looking back years later can be truly enlightening. Personally, one of the items on my list that I haven’t yet completed but am most excited about is becoming a figure fitness champion.

While I may not compete in the traditional sense, I want to incorporate fitness into my life and share my journey on social media. I don’t want to blend in with everyone else by just jumping around on reels. Instead, I aim to find a unique and authentic way of expressing myself, sharing stories, educating, and promoting wellness. It’s more about being a genuine example than simply selling a product. Being on camera is new to me, but I’ve been challenged a few times to go live, and the response from my followers has been overwhelming. It’s all about finding my true self and figuring out how I can make an impact.

What are some of your hobbies and interests?

My favorite thing to do these days is to teach. I really like to see people light up and learn about different things. I was a youth minister. I taught kids of all ages, from preschoolers to seniors. I did a lot of Sunday school teaching. I like teaching stories. I find that stories, whether in a book or in real life, are just so inspiring and give us hope. So that’s something else I’m kind of getting into.

I was kind of forced to go on hikes and walks as a kid. I do still enjoy it if somebody takes me out there, but my disease really affected that part of my lifestyle here in Colorado, especially the Raynaud’s. I’m kind of in a new phase of life, finding out who I am as a person and not just a mom. When I was younger, before I had children, I was a wellness fanatic. I really wanted to get into personal training. Right now, I’m finding myself again and getting back into that part of my life. It’s partly the reason for my success in managing the disease instead of the disease managing me.

What helps you get through difficult times?

My family was the driving force behind my motivation. As I mentioned before, there have been several losses on my husband’s side. His stepfather passed away from a stroke in 2014, followed by his grandmother in 2016 and his mother in 2017 due to breast cancer. Then, in 2018, I had a stroke. It made me realize that I couldn’t leave this world and burden my family with such pain. Losing these close family members was a driving force to motivate me to find a solution to get better so that my family didn’t have to worry about losing me to sickness as well.

I had witnessed the loss of many significant individuals, and one day, as I lay in bed, I found myself crying and praying to God. I begged Him to let me stay for my children, pleading that I had to be there for my girls. During that vulnerable moment, I realized that teaching and singing were my constant outlets. Although I’m not the best singer, I love praising God through songs.

Emily and her husband visiting Mission Beach in San Diego

What advice do you have for those with scleroderma or other chronic illnesses?

My advice would be not to be afraid of seeking second opinions or exploring alternative treatments. Take a look at your surroundings and assess what you’re dealing with. Sometimes, people in the workforce lead unhealthy and miserable lives due to work-related stress, being overworked, and being underpaid. This kind of emotional burden and negative energy can create turmoil in the body. I can’t provide a step-by-step solution, but I encourage you to take bits and pieces of this advice and make it your own.

Ultimately, my advice is to listen to your body and trust your intuition. We all have that inner voice that tells us when something isn’t right. Pay attention to it, because it can serve as a warning sign. Don’t second guess yourself just because someone else says something. We need to value our own thoughts, emotions, and feelings and not let others take them away from us.

Finding a balance between being a positive example and dealing with the challenges of the world can be tough. But it’s important to stay true to who you are and not let others diminish your belief or your connection with God. I want to give hope to all my former students and remind them to hold onto their upbringing and where they come from. Be a beacon of light in this world, and don’t let yourself become like those who try to take away our faith. Find your true identity, and let God be your guiding light. By doing so, you will shine brightly for Him, make a difference, and help others.

Emily and her girls attending a business conference – Roadtrip!

A message from Emily Grace…

Keep these stories of inspiration in your heart, and be there to listen to and guide others with humility and a sincere spirit.

You will achieve amazing things and find fulfillment. Let your creativity and the power within you guide your actions, and you will become a valuable and cherished individual in this world.

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us

July 24 2023

Natasha Sisodiya

sclerounited_ppavrw Issue 4 California, Cooking, Fitness, Health, Natural Therapies, Parent

Los Angeles, California (United States)

NATASHA SISODIYA

Scleroderma Stories Issue 4

Natasha on a hike in Idaho

Please introduce yourself

My name is Natasha Sisodiya, and I turned 50 in February. I have been married for 25 years and have two boys, Shaan (18) and Taran (15). I was born in India and raised in Saudi Arabia and Canada before moving to San Francisco in 1992. In August of last year, my family and I moved to Los Angeles.

Natasha’s family at a mud run obstacle course

Natasha’s family on a trip to Puerto Vallarta, Mexico

What symptoms led to your diagnosis?

It took almost a year for doctors to diagnose me with scleroderma. Initially, the first doctor believed it was drug-induced lupus and advised me to wait for a few months for my antidepressant medication to leave my system.

The skin tightening was the scariest and hardest part of my life, and not knowing what it was made it even scarier. The doctors told me it was a very serious and rare disease with no cure. They had to manage it and check my heart and lungs. This was all very new and scary for me, as I had never dealt with any health issues before.

The initial symptoms were joint pain, stiffness, and numbness in my arms and legs. I also experienced fatigue and low-grade fevers, as well as a rash on my face. My fingertips turned blue or white when exposed to cold, and my skin became tight and shiny. My lips disappeared, and when I smiled – you could only see my teeth. The facial changes started within the first five years, but if you didn’t know I was sick, you wouldn’t immediately recognize it.

I went to several doctors, and one of them thought it might be an allergy, so I was put on some new medications. However, the symptoms persisted, and I decided to see another doctor. This doctor suggested that I see a rheumatologist, and they initially thought it was rheumatoid arthritis. They put me on several drugs, but I didn’t seem to get better.

I went back to the doctor, and they noticed that I was losing my cuticles and had lines on my nails. They called a dermatologist to take a look, and they confirmed that I might have scleroderma. They did some specialized tests, which came back positive. I have been on different medications since then, trying to manage and keep the disease stable. So finally, I was diagnosed with scleroderma about 10 years ago when I turned 40, so I would say it was around 2013.

I feel blessed and lucky. Although I am not the person I used to be, I can still walk and take care of my family. I know some people with this disease have it much worse and struggle to do basic things, but I’m doing my best to manage and stay positive.

In the past, I have experienced some gastrointestinal issues. However, I undergo check-ups for my lungs and heart every six months, and everything seems fine.

Natasha with her husband, Deepak, on a dinner date night

Natasha and Deepak at an Indian function

To what extent did you understand your diagnosis?

Honestly, when I was diagnosed, I had no clue what scleroderma was. But I got really scared when the rheumatologist told me it was a serious and rare disease and that I needed to be monitored every six months to ensure it wasn’t spreading. Eventually, I switched from Kaiser to Stanford for their scleroderma clinic.

After a year of denial, I joined a support group and met people who were dealing with similar issues. I also did a lot of reading and research to learn more. Making these connections helped me to not feel so alone since most people I know are unfamiliar with scleroderma. In terms of my experience, I’m happy to share more.

Has scleroderma impacted your mental health?

Currently, I am getting used to a new normal. For years, I was deeply depressed about my condition, asking “Why me?” I was in denial for about three years.

The biggest factor that helped me was Ayurveda and Panchakarma, which I learned about growing up in India.

When I was in my early forties, I underwent a two-week Panchakarma therapy, and it did wonders for me. It was an intense massage and ginger tea, and I had to follow a strict diet regimen, disconnect from my family, and spend time alone. During this time, I did a lot of reading about gratitude and being thankful, which helped me accept my situation and changed my perspective.

However, it was not an easy journey. When I was first diagnosed, I was angry and scared, and it affected my family as well. There are still days where I have a pity party and cry, but for the most part, I accept my condition and focus on managing it and enjoying life. Instead of dwelling on why it happened, I try to figure out how to deal with it and move forward.

Which symptoms have been hardest to deal with?

The joint pain and muscle weakness have definitely been the hardest symptoms to deal with. I used to exercise a lot and do high-intensity workouts, which I can’t do anymore. Accepting this new normal was tough for me.

The cosmetic changes also brought me down, even though no one else may have noticed.

How have your relationships changed, and how have you adapted?

Living with scleroderma has made it challenging to maintain friendships, and I now have only two close friends. Many people I used to socialize with are very active and social, and I often have to cancel plans due to my health.

I stopped socializing with friends due to depression. It took time to reach out to my few friends who now understand my situation.

Natasha with a good friend who lives in Idaho on a hike in Scottsdale, Arizona during a weekend trip

My depression worsened, which impacted my relationship with my husband. I feel insecure about my appearance, and it has affected our intimacy. Furthermore, when I am feeling down, it affects everyone in the house, and there have been many days when I have been in bed, crying.

It was challenging for my family, particularly for my husband, who is a medical professional and understood the condition I was going through. My kids struggled as I was not able to do the things I used to do with them.

Nevertheless, the people in my life have known about my condition for a long time, and my friendships remain intact. With my children now older, they require less of my attention, and I am focusing on improving my relationship with my husband and striving to be happier overall.

The Sisodiya family celebrating Shaan’s high school graduation in Danville, California

My friends have been a great support, checking in on me and knowing when I’m not doing well. It’s hard for me to ask for help, but I’ve learned that it’s okay to do so.

Even something as simple as asking my parents to take the kids to school or bring them food used to be a challenge, but now I know that it’s important to reach out for help when I need it. I used to try to do everything myself, but I have learned that’s not always possible.

My parents have also been amazing and phenomenal in their support for me. When I went through a tough time with my health, they stepped in and took care of my children because my husband was busy with work. They have always been there for my kids, even when I had to go on disability and wasn’t well. When I lived in San Francisco, they were close by and helped with everything from dropping off food to looking after the kids.

Natasha with her mom and dad on vacation in Nuevo Vallarta, Mexico

My brother was also supportive. He and my parents encouraged me to try alternative therapies like Panchakarma, which I hadn’t believed in before.

Natasha celebrating her 50th birthday in Los Angeles with her brother, Lokesh

How have you adapted at work?

The symptoms of my illness became quite severe on 3 occasions while I was working. At that time, they were trying different medications, such as methylene, but the previous drugs weren’t effective. Due to this, I went on disability and later returned to work part-time. This affected my ability to work full-time as I did not have the energy, and the fatigue and pain were present.

Although they were unsure about what it meant at first, my coworkers have been very understanding. They were supportive, but things became more comfortable for everyone once I received a letter from my doctor explaining my condition, the need for monitoring, and the impact of stress. My coworkers made adjustments to help me, particularly as an accountant who works on a computer. Despite the challenges, they were very supportive, and when I went on disability, they took me back part-time, allowing me to work flexible hours.

Has scleroderma impacted your lifestyle?

My diet has undergone a huge change. While I occasionally indulge in cheap meals, I am mindful that I will feel fatigued or experience more joint pain than usual the following day.

In terms of exercise, I still stay active, but instead of running, I walk. The biggest lesson I have learned is to listen to my body, and if it tells me I cannot do something, I do not push myself. Instead, I try to keep busy and stay active even if I am not feeling well.

What helps you in difficult times?

Talking to my best friend helps. And having faith that things will get better, even though it can be hard to believe at times. In the past, I wondered if my low moments would be permanent fixtures in my life, but I learned they are temporary. I can rise again.

I have found that keeping busy and talking to others who are dealing with similar health issues, regardless of whether they have scleroderma, has been helpful.

Scleroderma has affected major decisions in my life, such as missing marathons and declining job offers due to my limited mobility in cold weather. However, it has also taught me to be grateful and to appreciate every moment.

Life is fragile, and I do not take my good days for granted.

Tell us about @bytesofyum and your passions

I have a passion for hiking, exercising, and cooking healthy food. After being diagnosed with scleroderma, my passion for cooking arose as I had to watch my diet carefully. It led me to create an Instagram page (@bytesofyum) to share my healthy cooking and support me during my journey.

Hiking and exercising were part of my routine, but I had to stop due to the illness affecting my muscle tightness and joint pain. However, using a steam room helped me loosen up and minimize joint pain.

I am still passionate about hiking and would love to hike somewhere overseas like Kilimanjaro in Africa someday.

Follow @bytesofyum to see Natasha’s healthy cooking!

What are your plans for the future?

At the moment, my focus has been on the recent move, so I haven’t fully mapped out my plans. However, I have a strong passion for food.

My professional background lies in accounting, and I do intend to return to work eventually. However, my goal is not to pursue high-level positions like Controller or CFO solely for financial reasons.

Instead, I aspire to combine my love for food and my interest in health and wellness. Whether it’s sharing recipes or educating others on how diet can heal the body, that’s where my true passion lies. Although I’ve only dabbled in this realm for fun through my Instagram account, I would like to delve deeper and actively help people in the field of health and wellness.

Natasha hiking in Scottsdale, Arizona

What treatments have you tried?

I am currently taking Cellcept and Plaquenil. In the past, I have taken Methotrexate and Imuran. I had to inject methotrexate into my stomach once a week, which I did not enjoy due to its long-term side effects and lack of improvement in my condition. While it hasn’t been a complete cure, these medications have allowed me to function and manage my symptoms.

In the past, I have also tried Ayurveda Panchakarma Detox and hand therapy to improve my mobility, but I found that taking care of myself through diet, exercise, and self-care was just as important as my medications. I pay close attention to what I eat and what products I use on my skin, as I now understand the significance of these choices in maintaining my health.

Can you discuss your experience with medical expenses?

I am fortunate to have health insurance, so my medical expenses have not been too much of a burden. I pay a $20 copay each time I see a specialist and around $20 a month for medication. Other tests cost me around $100 out of pocket, which is nothing compared to what my insurance covers.

There have been expensive procedures such as heart echos, endoscopies, and lung testing costing around $20,000. Thankfully, my insurance covered these expenses.

While my medical expenses have not caused major financial adjustments, not working has affected me financially. I miss making money to travel and do fun things, but I’m way more concerned about returning to work as stress can trigger a flare-up of my symptoms. For now, I am focusing on taking care of my health and family.

Sometimes I feel guilty that I can’t contribute financially to our household. My husband is doing well professionally and has been the breadwinner, so I feel blessed in that way. We’re planning for retirement, and we’re not in much debt. We’re frugal, which can be annoying, but it’s smart.

I try to focus on today, but I worry about my kids’ future. That’s just part of being a mom.

Natasha’s children: Taran (left, 15) and Shaan (right, 18)

Have you found any scleroderma communities?

I belong to two Facebook groups for the scleroderma community and a few on Instagram. I used to be more active, but it can be negative and bring me down. However, I have met people who are going through similar situations and have made jokes and had positive interactions. Sometimes you have to laugh, right?

I met one person through Instagram, and we keep in touch. I also receive messages from people who have scleroderma, and we share our experiences and symptoms. I have helped some people with diet and shared recipes.

I met three people through Facebook when I lived in San Francisco, and I am supposed to meet one person in Southern California, but she is still recovering from being in the hospital.

What is something you wish you knew earlier?

I wish I had known how important it is to pay attention to what I put in and on my body, regardless of my health status. Although I was always active, my diet was full of processed foods. Now, I eat mostly organic food and try to avoid packaged foods, canned foods, and plastic bottles. I consume only organic meat and dairy and avoid gluten.

Taking care of our bodies is essential, and we need to nurture and protect them. While it is unclear whether my illness resulted from my previous lifestyle, I know that taking care of myself now makes me feel better.

What are some skills you’ve learned from your experience?

I’ve learned how to cook, which I didn’t know before. Additionally, self-care has become a crucial skill for me.

Previously, I didn’t prioritize my well-being and always focused on others. However, my experience with scleroderma has taught me to listen to my body and not push myself too hard.

Natasha and her friends after a mud run obstacle course in Tracy, California

What advice do you have for people with scleroderma or other chronic illnesses?

I know it’s hard, but try to stay positive. Focus on what you can do and the things you’re grateful for.

While it’s understandable to feel angry, depressed, and bitter, accepting your new normal and moving forward is essential. It takes time, but eventually, you’ll come to terms with it.