Los Angeles, California (United States)
Scleroderma Stories Issue 3
Please introduce yourself
I live in Los Angeles, California. Born and raised. I have been married for three years and been in the relationship for nine. I live with my husband, and I live with my mom. She is my caregiver.
My family is really important to me. They have supported me throughout my whole life. My mom is a single mother, so she has been there for me my whole life. And even when I got diagnosed, she was there when I got diagnosed, and I became her number one priority. So those are the people that, I think everything that I am, I am because of them all.
I was diagnosed with scleroderma in March 2012, and I found out a week before my 19th birthday. I was 18, almost 19, but I had symptoms years before.
What led to your diagnosis?
During summers, I started noticing that I always got really dry skin and red patches all over my face. When I would go to the doctor, they would send me to a dermatologist, and it was always, “Oh, you’re under the sun and you do sports, so that’s why your skin gets really dried. Just remember to always wear sunblock and cover your face.” That was one of my symptoms.
And then growing up, I noticed that I always used to bite myself when I would talk or eat. I would go to the dentist, and the response was just, you’re growing, your teeth are growing. They got to a point where I was bleeding a lot. I went to different dentists, and they told me that two of my teeth that I was supposed to have since I was a little girl didn’t come out. They were barely coming out. And that’s why I was biting myself; they were coming out, and there was no space for them to come out. They decided to open my gums. It was supposed to help, but it did not help. My teeth are still really really small in the back, and I still bite myself when I eat.
When I was in high school, I was really athletic. I used to walk, run, I was into soccer a lot, so I picked soccer. After high school, I went to college. At my college, there were two big hills before you would get to campus. I started noticing that I could not walk those hills. I was short of breath. I also started noticing that I was getting a lot of pain in my legs. My feet were getting swollen, and I wouldn’t understand why. I went to the doctor but didn’t get any answers that were right. But I do remember, growing up, I had a lot of leg pains. It was always, “You have growing pains.” It always looked to me that they were growing pains.
Then the last symptom that I got was a year before, which was when I was in high school. It was my senior year. My right hand would get really swollen, and I started noticing that my hand was getting hurtful. I couldn’t take the pain, and I couldn’t do anything. My mom took me once to the emergency room, and they told me that I’d probably hurt myself or fell on it. I knew I didn’t. That first time, they put me on a splint, and I was okay for about three months.
After three months passed, I noticed that I was getting the same problem in my right hand. I couldn’t move it. It was purple, swollen – the same problem I had three months before. I went back to the emergency room, they put me on half a cast, and it helped for a while. A couple of months later, the same problem happened, and it just didn’t look normal.
My primary doctor decided to test me because he said that there was something wrong. I do have a family history of cancer, so I thought maybe there was something like lung cancer. But it wasn’t. That’s when I got tested for scleroderma, cancer, and lupus. And it came out that I had scleroderma.
How did you feel when diagnosed?
When I got diagnosed, it was more of a surprise because nobody really knows what scleroderma is. To hear that you have scleroderma and not know what it is, was shocking. I was like, first of all, I don’t know what it is. I don’t know anyone that has scleroderma. “What’s going to happen?” When my primary doctor diagnosed me, he gave me a little card and told me to only google this website and put “scleroderma.”
“Don’t go to anything else because you are going to get scared,” he said. And he said to wait on it. Wait on it until you can’t, which was going to be impossible. I was coming out of the doctor’s, and I googled it already.
Like I said, my mom was there. She was the first person that knew I had scleroderma. I remember we just both really cried because we had no idea what was going to happen. It was more of a shock. I was surprised.
I tried to learn as much as I could that same day, but not immediately. I came home, and on the way home, I was crying. After my mom found out, I told my boyfriend, who’s my husband right now. I told him that I had scleroderma. We both had no idea what it was. I remember I came home, and I was just crying and crying. At that time, I lived with my brother. We all lived in the same house. It was the same thing: nobody knew what it was. They started researching before I did, because I was just completely sad. I was just sad and didn’t want to see anyone.
After a while, when they finally told me that I was going to be okay, that’s when I decided, “Okay, let me look at this website that my doctor gave me to find out what was going to happen.” He did tell me that I had to go see a rheumatologist, so I knew that was my second step.
What other symptoms have you developed since your diagnosis?
I have a lot of problems with my stomach. I get full really fast. My major problem right now is my stomach.
I also developed high blood pressure. I think it happened because, when I got diagnosed, they put me on prednisone. I was on a very high dose of prednisone, and I gained weight really fast. It was in a matter of five months that I gained about 40 to 50 pounds.
The hardest symptom to deal with is my right hand. I write with my right hand and do everything with my right hand. There was a time of my life in that I couldn’t even hold a cup of water, I couldn’t hold a fork, I couldn’t brush my hair or brush my teeth. So, I think my hand is what really affected me.
How has scleroderma impacted your daily life?
I think it all depends on how I’m feeling that day. With scleroderma, it’s a rollercoaster. So you have your good, your bad. Sometimes you can be doing really well in the morning and plan something for the afternoon, and you can get sick and your plans will be canceled.
It’s really hard for me to plan something because I don’t know if I’m going to be able to do it. I’m a big planner, and I’ve always been my whole life. With scleroderma, I learned that I cannot plan things for the future – not even a year, not even six months. Scleroderma affected me in that I can’t make my plans like before. I just try to live day by day and depend on how I’m feeling that day, in that moment, if I have to do anything.
What is the scariest or hardest part of living with scleroderma?
I think it’s not knowing what’s going to happen next. Like I said, I have my days where I wake up feeling really good and plan to do something, and I won’t be able to do it because I will get sick. Or I have my days where I don’t want to get out of bed, and I take my medication, and I’ll be able to do whatever things I have to do.
What are your hobbies or interests?
I love sports, especially soccer. I grew up seeing soccer. My brother played soccer his whole life, and then there was a part of my life that I played soccer. I’m a big Disney fan as well. I love seeing all the Disney movies, and I have a big Mickey and Minnie collection. Everything I have is Mickey and Minnie.
One of my goals in life has always been to help people. When I got diagnosed, I thought that all just went away because I wasn’t going to be able to go to college to accomplish my goal. I always thought that that goal was just gone. But when this whole pandemic started, I decided to open my own YouTube channel, “Alejandra Warrior.”
I just decided to start recording things that I have been through in the past so people can see, okay, I made these mistakes in the past because I did not know. And if you have already been diagnosed with scleroderma, don’t make the same mistakes that I did. They were really hard. I made really bad decisions in the beginning, and I want to help people not make the same mistakes that I did. That’s something that I’ve been doing lately, just recording my life.
What medications do you take?
I’m taking prednisone. Lisinopril for my high blood pressure, then I’m taking diclofenac for my stomach. For migraines, Sumatriptan. I’ve got quite a lot of medication. Then I’ve also been taking famotidine, escitalopram, and tramadol.
How do you feel about all of the medications that you need to take?
Do you have a favorite or least favorite medication?
Have you done any treatments besides taking medications?
Do you have a lot of medical expenses?
Financially, how do you feel about the future?
How has scleroderma affected your ability to work or go to school?
How has the pandemic impacted you?
Have you missed any particularly memorable events or moments because of your scleroderma?
How else has scleroderma changed your life?
How have your family and friends supported you?
When did you first meet another person with scleroderma?
What is it like to be around other people living with scleroderma?
How do you get through difficult times?
Has having scleroderma changed your mindset or life approach?
What are your goals for the future?
What advice do you have for people with scleroderma or other chronic illnesses?
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