January 2010 was the beginning of a very busy year for me. I had just come back from visiting colleges on the mainland with my second daughter (of three girls) who was graduating in May. She and I had just completed college applications, financial aid paperwork and were working on plans for her freshman year away in the mainland. I was very busy at work and had been feeling like I just couldn’t seem to get enough rest. I was really tired and tried to slow down so I could “catch up” with everything going on in my life. I thought all of the activities surrounding my daughter’s graduation, her party and move to the mainland was causing this exhaustion! I then started to notice that my vision wasn’t as clear as it used to be and I thought it was maybe related to my exhaustion. I made an appointment to see my ophthalmologist and have an eye exam. He stated my vision was fine. I continued to feel exhausted with my dry eyes, but continued to work full time, had a successful graduation party in June and traveled to California the end of August to get my daughter settled for college. I returned home, went back to work and started an accelerated 18 month Masters in Science Nursing program at University of Hawai‘i.
I’m not exactly sure what happened once I returned home, but in September I just didn’t feel like myself. I couldn’t seem to get back into the normal routine of my life and I was having difficulty functioning normally each day. I couldn’t seem to concentrate and focus on school and was having problems doing my assignments. I have a history of asthma and bronchitis after many years as a flight attendant with smoke in the cabins. So, I thought I might have bronchitis because my throat was dry and my voice was hoarse. I was also coughing, so I thought maybe I was wheezing. After the first visit with my Pulmonologist, he explained that my lungs were fine and that I should follow up with him in a week if I didn’t feel better.
By October of 2010, I started to feel extremely exhausted and drained with work and everyday activities! The skin on my feet and body got very dry and my voice was hoarse everyday. My vision seemed to become blurry and my eyes hurt. I couldn’t remember simple things like my pin for my bankcard. I continued with my dry cough. I couldn’t get up in the morning and stayed in bed for hours sleeping each day. I called in sick for two months without knowing exactly was going on with me. I had to drop out of school. I went back to follow up with my Pulmonologist. He was concerned because he had never seen me like this before and decided to get blood drawn. The results came back and my liver function tests were very high.
I was referred to my Gastroenterologist who reviewed my labs. Had an ultrasound that didn’t really confirm a reason why I felt the way I did. I was then referred to see an Endocrinologist who ran some tests on me which were all negative. My Gastroenterologist then sent me to have a liver biopsy. The results were not as straight forward as expected and I was diagnosed with autoimmune hepatitis. This was the start of medication to help decrease the inflammation of my liver and get me back to “normal” liver functioning. Next stop, Rheumatologist.
At the end of my first visit with my new Rheumatologist, I was given a bunch of lab requisitions. I looked at them and was in shock to see these were all the labs I needed to have drawn to try and figure out what might be wrong with me. I went down to the lab and the tech asked me if I was going to do all of it today. I stated I was and was informed that it would be twelve vials of blood being drawn. Wow! I was surprised but eager to get a diagnosis, so I did it. In between these visits I also saw my Cardiologist who told me everything was good. My lab results came back in January of 2011 and my Rheumatologist called me. I needed to have a lip biopsy to confirm what might be Sjögren’s syndrome. I made an appointment with an ENT and had my biopsy done. I followed up with my Rheumatologist in February and received confirmation that I had Sjögren’s syndrome.
I was finally given an answer to my problems and on the road to living my “new” normal life again in February 2011. It took six months from when I first noticed I really wasn’t feeling well until my diagnosis of Sjögren’s Syndrome by my Rheumatologist.
It felt like a whirlwind of events that led up to my diagnosis! I didn’t have time to absorb what was happening to me or even try to grasp the concept that I might have a chronic illness. I was sick, depressed, unhappy, angry, frustrated and most of all I didn’t have one person who understood what I was going through! I had to deal with all of this myself and try to understand what was happening to me. During my visit in February with my Rheumatologist, I asked if there was a support group that I might be able to attend. I also asked where I could get information about Sjögren’s syndrome. I was referred to the Sjögren’s syndrome website and discovered there weren’t any support groups in Hawaii.
I went home confused and frustrated that I had nobody to help me and nobody to educate me on my new diagnosis! My thoughts were all over the place as to what my future would be like and how my health would deteriorate. My coworkers had been asking me what was wrong with me when I was out sick and if I had a diagnosis yet. At this point, I was too embarrassed to discuss it and never gave them a straight answer. I didn’t want people to think of me as having a “chronic illness” and thinking I would be unable to function in the capacity I needed to as a nurse. I didn’t want people to feel sorry for me and treat me differently. I finally decided to take my frustration and use it to motivate myself and help others like me. I knew I would have to start telling people about my Sjögren’s syndrome to start educating them and help raise awareness. This turned out to be another experience I was not prepared for! When I finally had the courage to start telling people about my disease, I got very anxious, stuttered and even started to break out in a sweat. People would ask “what’s that” (when they heard Sjögren’s? After the first few times, I started to feel more comfortable because the response was wonderful. People were able to understand what I had been going through and helped to boost my confidence that I hadn’t lost any of my old self. This gave me hope that this disease was not going to have the impact on my life as I had initially anticipated.
Because Sjögren’s was not a very well known disease, I was on a mission to educate everyone and anyone! I decided to write my story and put it in a newsletter that is distributed to employees and patients in my organization. I was nervous when it came out in October 2011, but pleasantly surprised to see the positive response and questions it raised about Sjögren’s syndrome.
After much thought, I finally decided to start the support group because as an RN I feel that education is the key to success with any disease or chronic illness. I also feel that patients need to be proactive with their health care and be able to ask the questions needed to help them live their lives. With my experience of being diagnosed and no real support to help me understand, in July 2011 I decided to discuss starting the group with my Rheumatologist. I received great support and help with information and resources I needed to get started. I was able to squeeze in the first meeting in October and then schedule five meetings in 2012. I have had some great physicians volunteer their time to help me on my mission to raise awareness and educate in Hawai‘i about Sjögren’s syndrome.
My life has changed since my “health scare”. Every day is a challenge for me! From the moment I wake up until I fall asleep my life now revolves around my health and how I feel. I make sure I balance my day and rest when my body tells me to. I took charge of my life and decided to make changes to get healthy! I joined 24 hour fitness in January of 2011 and have changed the way I eat and what I eat. I make healthy choices every day. I have had to work hard to be more aware of what’s going on with my body and make daily adjustments as needed in my life. My work is challenging and stressful at times, but I have been successful in finding a work life balance because of my awareness of my body and disease. My life is very different and has changed since my diagnosis. I feel great and love my life! Sjögren’s helped me to meet many wonderful people and to learn how to enjoy and appreciate life one day at a time.