Photography - Scleroderma United

July 24 2023

Jojo Santos

sclerounited_ppavrw Issue 4 Art, Food, New York, Parent, Photography, United States

Queens, New York (United States)

JOJO SANTOS

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.

Jojo with her children, Ghaby, Alex and Kiyan

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?

I meditate and pray frequently. In 2020, a buddy brought me to a Bible study, and I believe I discovered Jesus or my thing with this group since our pastor is open-minded and doesn’t judge.

What lifestyle changes have you made?

I stopped consuming collagen-rich foods. I no longer eat red meat, especially rough red meat. I gave up eating burgers. I will eat vegetables if there are a lot of them, as long as they don’t have a lot of collagen, but I usually eat chicken or fish. If I want to consume alcohol, I limit myself to 1-2 glasses of wine.

Jojo and her best friends, Loui and Arvee

Have you met anyone else with scleroderma?

Someone from the Philippines texted me, since I often discuss systemic sclerosis. She is an advocate and has a podcast on scleroderma. Our first chat was about her receiving treatment. I informed her I didn’t go through it since I assumed there were differences in processes between nations. I advised her to seek rheumatology care since I didn’t want her to be misdiagnosed. She is a really strong woman.

Jojo and her family (Ghaby, Alex, Kiyan, Tatay Mario, and her brother Mon)

What are your goals and dreams?

I’ve always wanted to be a chef. When I was around 24 years old, I had a catering firm and later a mini-restaurant in the Philippines. But when I moved to America with my first ex-husband, I had to put my career on hold and work as a babysitter for 8 years. After my ex-husband left, I was a single mom and struggling. There’s a saying that once you survive New York, you will survive anywhere. It’s true. New York is really a jungle, but it’s the way how you embrace your life that matters.

In 2017, I achieved my objective, but I’m not going to stop there; maybe in a year or two, I’ll be an executive chef, so why not?

Our disease is extremely uncommon and incurable. That is why if a study is being provided to me right now, I’ll accept it even if it may not be advantageous to me. That way, future generations will be assisted and will not feel the same way I do. If someone asks me what I did in my life on Earth after I’m gone, I’ll tell them I became an inspiration to individuals with scleroderma.

What do you wish you knew earlier?

I smoked from the age of 18 until I was 30 years old. I wish I hadn’t smoked throughout my early years.

I’ve also learned patience. Patience is a skill that you must master. Sometimes I want to cut my finger off because it’s so inflamed and itching, but I just bathe my hands in hot water with Epsom salt and wait for the discomfort within my finger to go away.

What is your advice for those with scleroderma?

I’m not sure what counsel I can provide because I’m still learning, accepting, and living with it. I constantly remember that I desire to live. It breaks my heart to see individuals take their own lives so easily.

Have hope. Please be patient. Accept what you have and live your life your way. Follow your aspirations. Don’t give up on your dreams. That is what I tell my children.

When you dream, make sure it’s achievable. And when you have achieved that dream, enjoy it to the fullest.

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

Paris Hill

sclerounited_ppavrw Issue 3 Family, Ohio, Photography

Cincinnati, Ohio (United States)

PARIS HILL

Scleroderma Stories Issue 3

Please introduce yourself

My name is Paris Hill, and I live in Cincinnati, Ohio. My family and photography mean the world to me.

What are your hobbies, and has scleroderma impacted them?

My hobbies include photography, reading, and learning new things. I had to make many adjustments due to scleroderma with my photography. I like to be both in front of and behind the camera.

In front of the camera as a model, sometimes the poses are harder to do or cannot be done because of my joints. Behind the camera, some frames I want require a higher angle, and since I cannot raise my hands above my head, it is difficult at times. I either have my sister Kenya, who is also my business partner, help me or I use a camera stick.

Why do you enjoy photography?

Early on, I was very self conscious of my scleroderma. My changing face and loss of pigmentation on my body… I disliked it. I basically tried anything I could do, including covering it up with makeup.

Modeling allows me to embrace what scleroderma has brought me. And honestly, it was a blessing in disguise. I found a new confidence, and I wanted to really share that and bring that out to others. That led me to eventually start going behind the camera.

Photo: Paris Hill @_pkportraits

When were you diagnosed with scleroderma?

I was diagnosed in 2012, when I was a junior in college. One day, I was doing homework and noticed my fingers were blue. I did not recall hitting them, but I knew that something was not right, so I went to the ER.

The ER doctor ran my fingers under warm water until they came back to their normal color. He explained that I have Raynaud’s, and it could be either primary or secondary. I was told to follow up with my primary care doctor. My primary care doctor luckily has scleroderma patients and instantly ran a test on me. I was lucky to be diagnosed fairly quickly.

Some of the symptoms that I have are limited joint range of motion in my shoulders, mild pulmonary hypertension, and gastroesophageal reflux disease (GERD).

Has scleroderma affected your ability to attend school or work?

Honestly, it did not affect my schooling because I was able to graduate on time. And I even went back for my paralegal certificate and explored law school as well.

It has not affected my work lately because I work office jobs. I just have to make sure that I keep my heater next to me. In college, I had jobs that required me to stand on my feet all day, and that gave my knee joints some problems.

Paris with her mom, who has rheumatoid arthritis

What lifestyle or mindset changes have you made as a result of your scleroderma?

I really had to stop being so hard on myself. I had to let go of the person I was and embrace who I am now. It is not easy at all. Some days are better than others. Along this journey, I have developed health anxiety, and that’s another thing I have to deal with as well.

As someone with scleroderma, have you had to make any special adjustments due to coronavirus?

I really really had to cut down my social circle. I have not dined out anywhere. I try not to let what is going on dictate my life, but I am definitely wearing my mask and maintaining my distance.

What medications have you taken

I have taken methotrexate in the past. I was off that for a few years, and I have a new rheumatologist who wants me on a maintenance dose of a medication just to prevent any flare ups. I tried penicillamine and now give imuran a try. I haven’t done any treatments other than medications.

Have you met anyone else with scleroderma?

Yes, I have met a few. A lot I have met on social media. In Ohio, we have the scleroderma walks, and I go every year!! I think meeting others with scleroderma has helped a lot too. I always have someone that I can talk to that understands what I am going through.

Do you have any goals or dreams for the future?

My dream is to be an attorney. I am leaning towards medical malpractice. My goal is to keep growing as a person. Scleroderma was definitely not in the plans, but I have it, and it is now a passenger in my life.

What mindset changes have you made since your diagnosis?

I’ve found that being faced with mortality so early in life puts a lot of things in perspective. You truly realize that your time here is precious and should not be wasted on people or things that generate toxicity. After my diagnosis I’ve focused more on doing things which bring me joy instead of putting them off for another time. I learned to live in the moment and find satisfaction in quality over quantity.

Most importantly, I realized I had to stop expecting my life to be a certain way and instead accept it for what it was. That acceptance helped me find pleasure in what I could attain even while critically ill.

Do you have any goals or dreams for the future?

I would say my goal for the future would be to achieve consistent enough stability to give back to the chronic illness community. I would very much like to use my experience with scleroderma and general patient advocacy to help others going through critical medical situations, whether it be a career or a more expansive volunteer position.