Queens, New York (United States)
Scleroderma Stories Issue 4
Please introduce yourself
My name is Jojo! I’m originally from the Philippines, but I moved to New York City in 2007. I am the sole parent of three intelligent and perceptive kids. It has always been my desire to work as an event chef. I have interstitial lung illness as a result of my Scleroderma diagnosis in 2015. However, I am an upbeat person with a free-spirited attitude who loves to cook, exercise, arrange flowers, blog, and travel. I enjoy doing crafts and painting.
What were your earliest symptoms?
My earliest symptom was Raynaud’s while I was in high school in the Philippines. My fingertips always turned purple after taking a shower, but the pain subsided, and they eventually went back to normal. Of course, in America, this happened too, especially in wintertime. But, I didn’t pay attention to it. I didn’t know it was a disease. I also had a pump to treat my asthma episodes in PE class at school.
When were you diagnosed?
I was 25 weeks pregnant with my third kid when I received the diagnosis in July 2015. I was a babysitter at the time. I had picked up the two kids I was taking care of, and we were walking in the park. It was really hot, but my hands were turning purple! I called my husband and told him I was going to the hospital because my asthma was making it difficult for me to breathe and my hands were going purple. Now, after everything, I know it was just scleroderma mimicking asthma.
Since I was 36 years old, my pregnancy was already a high-risk situation. My kid was in the care of physicians who were worried I’d lose him. However, he is my miracle child. I was in the hospital for about two weeks; every day, a different doctor visited me. My lungs were only functioning at 50% capacity and were already honeycombed. My physicians advised me to end the pregnancy since I was unable to take the meds because doing so might harm the unborn child.
I was still in denial at the time and simply wanted what was best for my child, so I was not realizing that I had an incurable, uncommon autoimmune illness. Thank God, my pregnancy and delivery went smoothly. The doctors informed me that I could not breastfeed my child since I needed to take my medications. However, I requested at least two months for breastfeeding before I began taking medication.
Being diagnosed with scleroderma has been like riding a roller coaster; the first year after starting the medicine, I had trouble breathing. My hands started to tense with light tension, which hurts. There are instances when I sleep for seven days before feeling fine.
How have your symptoms progressed?
I stopped working in August of 2019 and was quite depressed because cooking is my way of therapy. My doctor informed me that I required a lung transplant and would need to carry at least two liters of oxygen each day because my lung function was less than 50%. I informed them that I was unable to do so since working in the kitchen would be impossible. I requested a month to work on myself and she agreed.
I looked into the idea that working out or exercising will improve lung function, but I’ve never worked out before; I just practice yoga. Well, when the doctor tested my 02 stat after a month of consistently working out hard, it was 99%. They were all amazed and advised me to keep going because it was benefiting my lungs.
It used to be difficult for me to walk even one block, but now I am capable of three. The physician opted to postpone the transplant for the time being. Because of my job, I can’t work out every day, but I try to do it twice or three times every week.
What are your hobbies?
I have created a culinary blog called @iamjojobites on Instagram as well as a YouTube channel, since I enjoy cooking. Even back when I was taking my college entrance exam, my parents wanted me to be a doctor but I wanted to be a chef.
In the long run, I didn’t finish my bachelor’s on time because I got married early. I met my first ex husband and fell in love in my third year of college. I decided to follow my heart. I finished my studies after my firstborn. I went back to school to finish my bachelor’s, but I didn’t push it to be a doctor because I was already a mom. I decided to become an entrepreneur and become a chef.
Outside of cooking, I enjoy sharing photos and stories on Instagram because I understand that my face won’t look the same in five or ten years, and I’m okay with that. I also adore taking photos. Here in New York, I took a photography course. I primarily create portraits or landscapes.
How has scleroderma impacted your job?
Since 2017, I have been employed by a corporation as a chef. They initially had no issues, since I always left the workstation when I had a flare-up and passed out. However, I passed out at work in June of 2019, and the employer made a huge deal out of it. They advised me to take a rest period, FMLA, or force medical leave to protect their reputation.
According to my physicians, I had to heal for two weeks before I could return to work. However, they persisted, claiming that because I am a good worker and our company is unionized, they could not immediately terminate me. However, their HR missed a crucial item in my files that prevented them from moving further. To file a case, I looked for legal assistance.
My buddy extended an invitation to visit California in 2021. My resume was posted, and I was hired. I must work to provide for the kids. My brothers are with us; I know that. However, if you’re on your own, it’s different. So I spent a year in California. The weather makes it experimental, but happily, I’m not relapsing. But, I started to miss home and started to lose weight.
This firm that I’m working for at the moment texted me out of the blue in August when I was visiting my family to let me know that they were seeking a sous chef. Since I believed this position to be a fraud, I didn’t even apply. But after a day, they contacted me to see if I was available for an interview. I explained that I was only in town for a vacation, and they said that was okay and that I could still come in for a meeting. I got a terrific connection with the executive chef there when I went for an interview. I thought I saw an angel. I received a ticket to return home thanks to that employment.
How has it affected your relationships?
My marriage fell apart. Why? I have scleroderma and my ex-husband could not accept it. Especially when the doctor emphasized that having another child might be harmful to me, he assured me that everything would be great because I had already survived one.
In 2017, I divorced my ex-husband and began looking for a therapist. I was thinking about and recognizing that I had scleroderma at the moment, and it’s been two years since I discovered I had scleroderma. I thought, “Oh my God, Jojo, your body is already failing you.” However, I must prioritize feeding my children. My son was just two years old at the time, and his father is no longer in my life. I have to be tough. So I can raise him the same way I raised my other two children.
I have an excellent support system. My parents were there. My brother was here. The therapist assisted me in understanding what was going on inside of me and how life needed to change. My parents were the ones who helped me the most. My mother was the only one who could calm me. My kids are very tolerant and respectful.
What treatments and medications have you tried?
I participated in an Aurora research study for interstitial lung disease in 2020. My dermatologist recommended me to a physicians in New York. I got a medicine for Raynaud’s symptoms. Even when exposed to chilly temperatures, I could walk three blocks without wearing gloves, and my fingertips are still rosy. However, it didn’t last long. Now, when the temperature reaches 60, my fingers are already turning purple right away.
I visit my physicians at NYU and HSS, which are both learning hospitals. When I come in with Raynaud’s, the pupils are ecstatic and snap photographs of my hand. I’m delighted that these kids will have a firsthand glimpse into scleroderma sufferers’ lives, not only in the book.
I take eight drugs, including lidocaine ointment. I adore my medication – all of them, since they will aid in my survival. Lidocaine removes my discomfort, numbs my hand, and immediately cures my ache. Gabapentin is the medication that helps me relax at night.
What is your best way to deal with your scleroderma?
What lifestyle changes have you made?
Have you met anyone else with scleroderma?
What are your goals and dreams?
What do you wish you knew earlier?
What is your advice for those with scleroderma?
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