PHighter Friday Follow Up: Janeris

*Janeris' original post can be found here.

I have been doing great. It's been almost a year since I changed from an IV therapy to pills only. I have remained healthy despite being on a really dose of the new medication. My recent echos and pulmonary tests show so low that they can't be detected. That means my pulmonary pressures are so low there is no concern of the PH being active. I am active. I love going to the gym. The new drug requires me to eat every 8 hours. That on top of my regular meals has caused me to gain about 10 lbs in this past year. I am finding myself struggling to stay focused on eating healthy. I know that eating right has kept me healthy. So I have to always focus on maintaining a healthy diet. Other than that, my life has been amazing. I'm in the middle of 2 adoptions and am very happy. Stress is minimal. I see myself improving every day. My greatest pleasure is being able to motivate people around me to find their healthy place. It has been 7 years since my diagnosis. I'm hoping to one day not need medication.

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PHighter Friday: Janeris

 Pulmonary Hypertension is a disease I had never heard of until it almost killed me. I've suffered with Lupus since 1997. I was 16, a senior in high school, and began having severe joint pains and fevers. I've dealt with the countless effects of that deadly disease for so long, I didn't look too much into it when I started having shortness of breath in 2006. I figured the fatigue, shortness of breath, and rapid heartbeat were just part of it. I went to a couple of doctors who just confirmed what I thought. It was the Lupus. They'd tell me to take more Prednisone for the inflammation and I did. The shortness of breath kept getting worse. I couldn't bend over without getting dizzy. The doctors I saw would say my heart was working pretty hard but for me this was all normal. I went on living; suffering.

I met my now husband in 2008 and our relationship quickly moved toward marriage. I warned him that I had a lot of issues and might not be able to have a baby. He said that he didn't care. He said God would make everything ok.  He was very supportive through it all.  I still worked out every week and was very active in church. My lack of health couldn't stop me.  We got married less than a year after meeting. It was just in time for my biggest supporter to get the test of his life. We chose to get married in Mexico. It was 4 wonderful days spent with family and friends. We stayed 2 more weeks for our honeymoon. For someone with breathing problems, Mexico is not the place to be. It seemed much harder to breathe in Mexico than in Miami. We still did everything we set out to do. We went zip lining, swimming with dolphins, walking in the city and more. Most of it, however was done with my new husband carrying me. Everyone thought it was so cute because we were honeymooners but I was in severe chest pain and honestly just couldn't walk. The last 2 days of our honeymoon were the worst days of the trip. I began hallucinating and having severe chest pain. I thought of calling 911 but was afraid I'd be stuck in Mexico longer than I wanted. I sucked it up and relaxed until we went home. We requested a wheelchair at the airport but still didn't think about asking for oxygen. I didn't know what was wrong. The air in the plane was much thinner and I thought I was going to die.

We went from the airport in Miami straight to the hospital where I stayed for 3 weeks. I just wanted to go home to be with my husband for the first time. My oxygen levels were at 50%. I was immediately put on oxygen. This is where I started to hear that I had problems with my lungs and might need a lung transplant. Once I left the hospital I sought out a pulmonary specialist. I found a great one in Cleveland Clinic who knew exactly what to do. I was quickly taken in for a right heart cath among other important tests. I was finally diagnosed with Pulmonary Hypertension and put on the right medication. I survived on Revatio for a while. But having to take it 3 times a day proved too much for me and within time I had worsened my condition by not taking the medicine properly. In 2011 I started passing out often. I once passed out at a doctor's appointment and was taken to the emergency room. That was the beginning of my new life. There I was put on Veletri, an intravenous drug. It was a tremendous loss of independence and control. It was a severe shock for me.

I was so sad and had a hard time picking myself up. Every night was hard for me. Tears would soak my pillow.  I didn't understand my new body changes. There was constant urinating, swollen ankles, hot spells, weakness, jaw pain, headaches, you name it, I had it. How would I ever get through this? I felt my life was over.  My church family came through to make sure I did get through it. They knew I couldn't cook, clean, or barely move. So for weeks they came and took me to doctor's appointments, cooked, and were right there for me. What a team God placed in my life. I am loved! Another thing that got me through it was something that my Veletri nurse told me. She said I was allowed 5 minutes daily to feel sorry for myself. After that I was to enjoy the rest of my day. Eventually I didn't need those 5 minutes. That was an important part of the early stages of my recovery.

I began to see that light at the end of the tunnel again. I knew there was a purpose, I just had to find it. Time passed and I was tired of being tired. I had gained 30 lbs. from the prednisone and lack of activity and was still having a hard time breathing. But after 3 months it was time to get back to work as a full-time photojournalist at a local newspaper. Slowly, I regained my strength and started looking for alternatives. I found a functional medicine doctor in my area and she taught me the importance of the right diet for my body. My joy came from documenting my journey on a blog  called My Clean Cutting Board. It dealt with showing people what I was going through and how I was improving my health through whole foods. What a difference eating right made. I took out gluten, dairy, potatoes, eggs, coffee, alcohol, and a few other foods that were causing inflammation and a negative immune system response. I started to get better faster than I thought I ever would. I started the gym again full force. I started working at my photo studio, which I run on the side of my full-time job at the paper. I started singing in church again. And less than  1 year later my husband and I began talking about adoption. He saw my progress and together we decided that we were ready to start a family.

Soon the good food changed my body completely. I was taken off the prednisone and the doses of some of the other drugs I was on were lowered. I was so happy. Just 2 years after I was put on Veletri, we became foster parents. Doctors said I was in good health and gave me clearance for this huge task. We got a 2 year old boy in May of 2013. I realized then that all I had gone through was for this moment. You see, he is autistic and was a handful. He cried when he heard loud noises. Not out of fear but out of pain. I couldn't control him or anything he went through. He was a little Tasmanian Devil.  Through my diet change I had learned about the benefits of a gluten and dairy-free diet on children with autism. I cried tears of joy when I realized all my struggles meant something. I changed his diet and he got better. As I was taking care of him God was taking care of me. I continued to get better and they called me to take in a little baby girl. She was 3 months old. I didn't know how I would do this. Here I am with two babies within a year,  health issues, and 2 full-time jobs? Was I nuts? I knew God was in control. He had a plan for me and He wouldn't let me down.

My husband and I have been taking care of our babies for almost 2 years now. We are close to adopting one of them. I have since lost 40 lbs. (They really get you moving don't they?) My husband has been the best thing that could have happened to me. He came at the perfect time. God has a plan for me and I didn't let PH keep me from fulfilling that plan. I could have been in bed feeling sorry for myself. That would have been easy. But I said NO! I got up and chose to change my life. I chose to seek alternatives because I refused to believe that I would need a lung transplant, that I was sick, that I would not survive. I will not be held down. God needed me for something amazing and I didn't want to let Him down. I am beating PH!



My Clean Cutting Board

PHighter Friday: Elisa L.

In October of 2011 I had my first pulmonary hypertension symptoms. At the time I was not aware that it was PH. I started to notice that I was severely out of breath going up stairs. I first thought that maybe I was out of shape, and so I decided to go to the gym. I got on the Stairmaster, and within 3 minutes I had to stop. My heart was beating so fast, and I could barely breath. I have Lupus, I was diagnosed in August of 2010, and so after a few weeks of shortness of breath I decided to email my doctor. He immediately ordered tests. Throughout November and December I did test after test. X-rays, ct scans, blood work, ekg's, echo cardiograms, you name it. To make a long story short, I saw several pulmonologist, one who didn't think anything was wrong with me, so I went with a second opinion. In June of 2012 I had a right heart cath and I got my official diagnosis of pulmonary hypertension.

In July I was introduced to a specialist in PH. On July 26, 2012 I met my new doctor and I got the craziest news of my life. My doctor looked me in my eyes and said that because it took several months to diagnose me, and that my PH was progressing so rapidly, that I had about 2-3 years to live! WOW! Can you say reality check?!

The funny thing was that I knew I was really sick, I could feel it. My body had been shutting down for several months. Hearing this information didn't scare me, it made me realize that I need to make a choice, and my choice was to fight this! I told myself, No, I will not have an end date so soon. I will not be scared to die, but I will go out and live my life. The first thing was to improve my quality of life. I had to stop so many things I did before I was sick. In April of 2012 I had to leave the job I loved because I couldn't breath, and I was severely fatigued. I could not be active or work out. I could barely get myself dressed, or hold conversations with friends. I had a bad cough for over six months!

I will be honest, at one point, I felt defeated. I had to think about how many changes just happened to my life. I had to re think every move I made. I am a hard worker, and I loved working, but my doctor told me I couldn't do my job. I started to think about my legacy, and that became the driving force behind all that I do. I decided that I would live for the soul purpose to be happy. I let go of any stress. I embraced positivity. I let go of anger and negativity, and two years later I have never felt better. Yes, two years have passed, and I am still here.

I went to school for Fashion Design & Marketing, and I love the industry, but I know that my health will not put my in the middle of this fast paced cut throat industry. I found peace with that. I started designing and making bikinis, and people really love them, and so do I. I do love fashion and design, I enjoy being creative. My deepest passion though is helping others. When I was in management my favorite part of the job was working with people, and helping them reach their goals. That energizes me.

In February of 2013 I went back to school to become a Professional Life Coach. This was perfect for me because I can make my own schedule, work from home, and so what I love, help others. I soon realized that I wanted to build my business around helping people with illnesses. I remember thinking, "I really wish I had a coach to talk to when I was first diagnosed."

There have been so many struggles and life changes I have had to adapt to, but it is truly making me stronger. I am still perusing my dreams and my goals everyday. It is hard at times, especially when I get sick, or I am too tired. I know that what I am building will take time, but I will work at it everyday. Now, I am a wardrobe stylist, I get to help people find wonderful outfits, and its so rewarding to see how happy people get when they look great in an outfit. I still design and make bikinis, and I am excited to see where that takes me. I am also a Life Coach, and I am in the beginning stages of starting my own non-profit organization. I currently write for the Pulmonary Hypertension Association's PHPlus blog, and I am involved with the organization.

I started seeing a personal trainer in January of this year, and I workout at least three days a week. That is something that took me two years to achieve. I listen to my body, and I don't over do it, but it has been a challenge, and I have good and bad days, but it was a goal of mine, and I went after it.

My hope is that all people, but especially those who live with an illness really embrace life. I hope we can inspire each other, and know that we are not defeated by a diagnosis. We Can continue our life work. My legacy drives me, and I want to help people. I am available as a coach, a stylist, and a friend. Thank you for reading my story.



To learn more about Elisa please visit her website.

PHighter Friday: Bernadette

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!

Bernadette

"Don't give up, don't ever give up!" - Jimmy Valvano