Hello! My name is Bernadette and I am a PHighter from San Francisco, CA. I am an identical twin. We are both lupus patients. Our diagnosis occurred November 2004. Same health condition, but very different symptoms. I experience fatigue on a daily basis, swollen joints, Raynaud's, thinning hair, and photosensitivity. I found out last year that I also have Sjogren's, dry eyes and mouth. My biggest battle is pulmonary hypertension.
I can remember when I was about 18 years old. I started to feel dizzy. Back then, I thought I was just stressed out since I was in school full-time and lacking sleep every week. So I ignored it and didn't think much of it. A year or so later, the dizziness began to intensify, my heart was beating at a faster pace, and I found myself breathless after climbing up stairs to get to class. I went to the ER a couple of times too. ER doctors kept telling me I was fine and that it was all stress related. I wanted to believe that I was okay.
Fast forward to 2007 when I was 20 years old. I decided to take a shower one night. Little did I know, this would be the a-ha moment. I showered for a good 20 minutes or so and the water was pretty hot. I started to feel really lightheaded. That never happened before. I had to turn off the water and step out. I called my rheumatologist right away to let her know what had happened. She ordered an EKG, a stress test, and an echocardiogram immediately. She was onto something. I was getting worried. I was a teenager and I was so confused about the state of my health. The EKG and stress test came back normal. The echocardiogram did not. I was told I had an abnormal lung and that more tests needed to be done. I was scheduled for a right heart catheterization in October. I was pretty anxious before the procedure. I was new to this. I was scared too. Thankfully, my mom was there to support me. I remember lying down for a good six hours (they went into the groin area) and I couldn't move. I can also remember the nurse telling me to go on a low-sodium diet.
A few days after the procedure my diagnosis was confirmed: pulmonary hypertension. October 11, 2007 to be exact. My pressures were elevated, can't remember the exact figures. I knew what hypertension was, but what did it have to do with my lungs? I had to meet with a pulmonologist ASAP. I was still very terrified. What did this mean? I thought a lot about the future. Doing my own research didn't help, the statistics scared me. How long would I live? The pulmonologist was reassuring. There is no cure for PH, but it can be treated. My mom was devastated when she found out I couldn't bear children. It's still something I think about to this day. I know I have options, such as adoption. I remain hopeful. Anyway, the doctor prescribed Revatio, my first PH treatment. I had to be positive. My journey isn't a walk in the park. I was in community college during this time. My goal was to transfer out in two years, but that eventually became 4.5 years. I had to become a part-time student and slow down.
I've had my share of losing health insurance at 21, dealing with the cost of medication(s), and trying to find the best care possible. 2008-2010 was so hard. I hit rock bottom. I eventually qualified for health insurance after a long wait and quickly decided to be seen at UCSF. My sister was already being taken care of there, I wanted the same for myself. I adore my lupus and PH team. :) They really listen and have always encouraged me to do my best. Thank you, UCSF!
I transferred to UC Davis, Fall 2010. It was so rewarding! :D I was ecstatic!!! Adjusting to the university wasn't so easy. I was 75 miles away from home. Davis is a small college town. I had to make new friends and everything was much more challenging compared to my community college load. Each quarter was 10 weeks long. I was definitely missing my 18 week semester schedule. During my first quarter, I felt alone. It was a silent struggle, no one knew my story. I was quite fatigued. I had to set a time for napping, even in between classes. Things eventually got better. I made a lot of new friends and became an advocate for the Asian American community on campus. The last two years of college was a dark time for me. I had to switch medications at the start of 2012. Letairis and Adcirca were my BFFs. My maternal grandmother passed away in October 2011 and my grandfather in December 2012. I didn't know how to cope because they were so important in my life. They were my role models and supported me when I first transferred to UC Davis. Education meant the world to them. I kept my word and I always told them I would finish.
My last quarter of undergrad, I was enrolled in an autobiographical course. I shared my story about health, family, and my resilience. I was exposing myself to my peers and friends. I was nervous prior to starting my piece, but it was rewarding because everyone was supportive. I graduated in June 2013 with a BA in Communication and a minor in Asian American Studies. It was a very emotional time for me and my family. I finally had a degree!!! :) I'm taking an academic break for now, but I haven't closed the door on pursuing higher education.
It's been six years, going on seven since my diagnosis. Currently, I haven't been feeling great. My six minute walk test a few weeks ago didn't go so well. I can tell that my medication needs to be adjusted. My PH team wants to start Tyvaso and hopefully that'll improve my condition. A right heart cath also needs to be done. I'm hoping to start walking at a faster pace and biking. Running only seems like a dream right now, but I'm hoping to do it again. Slow and steady.
My PH journey has been a roller coaster, but I'm still here. At times, I'm fearful yet I block the negativity and opt for optimism. It all starts with yourself. I've learned to listen to myself. Sometimes, one has to decline an invitation for fun. Learning to say no is important! Getting enough sleep does wonders for me, even if insomnia creeps up once in a while. Taking my medications regularly is a MUST! I can remember a time when I didn't listen to my healthcare providers and they lectured me good. Always surround yourself with positive people. Their energy is contagious. Have faith! Many people pray for me and I pray for myself. I believe the big man upstairs is listening. My siblings mean the world to me, they are my heart and soul. I love you, Christian, Bianca, and Loretta! <3 Our dogs too, Laki and Coco. Journaling and blogging helps me cope. It's always good to vent. And take up as many hobbies! I love sports, Go Niners, Giants, and Warriors, photography, and traveling. I hope to see the world soon. But for now, domestic travel will do. And I haven't given PH support groups a chance yet, but I'm hoping to very soon. I'm a PHighter! Can't stop, won't stop.
You can find me on Instagram (@heartbern)! I post a few times out of the week. :D
Love to you all!
"Don't give up, don't ever give up!" - Jimmy Valvano