My Lupus journey and health journey are quite long. While I can’t speak on every aspect, diagnosis, or ailment in my life, I have chosen to touch on the most important and ones specifically related to my Lupus journey. So, it is broken down into sections and hopefully you can connect with one or more aspects of my journey!

I am a 30-year-old Lupus warrior who was diagnosed at the age of 14-years-old in 2010. However, my health journey does not start there. When I was born, I had many health complications but most aggressive was my Gastrointestinal issues that led to Pittsburgh doctors sending me to Cleveland Clinic for a work-up and eventually abdominal surgery at the age of five. Through my years of being followed at Cleveland Clinic by doctors at the top of their field, they did express their concerns about me having not only Crohn’s disease but Lupus and arthritis. As the years went on, more health issues and auto-immune issues appeared and got worse over time (migraines; seizures; joint pain  joint swelling; photosensitivity  malar rash  systemically attacking my lungs causing Pleurisy and Pneumonia; chronic Pericarditis; Raynaud’s; Sjogren’s – just to name a few). Children’s hospital and their doctors, in Pittsburgh, refused to believe that someone so young could have Lupus and these other auto-immune issues, they just kept blaming it on growing pains. In between my time at Cleveland Clinic and coming back to Children’s Hospital in Pittsburgh, my mom was diagnosed with Lupus.

After a couple of years of battling with Children’s my mom’s rheumatologist at the time (Dr. Fotios Koumpouras) graciously agreed to see me even though he didn’t see anyone under the age of 18. He was very upset with Children’s Hospital and said that “Children’s missed so much and I could have been treated so much sooner and that he was actually going to be sending a letter to Children’s explaining what all they missed and it could be used as a teaching tool”. I wasn’t initially diagnosed with Lupus right away; I was back and forth between Connective Tissue Disease (CTD) and Mixed-Connective Tissue Disease (M-CTD). Dr. Koumpouras said, “Lupus is a big diagnosis, especially for a teenager. Do I think it’s anything else, no! However, am I going to treat you any differently whether you have the label of CTD/M-CTD or Lupus, no!). For a couple of years my treatment went on the same while seeing Rheumatology and other specialists, but eventually I was diagnosed with Lupus. Dr. Koumpouras said, “We can’t deny you the label that is Lupus anymore, we need to call it what it is”. So, while never having a positive ANA, I am one of the few Lupus patients diagnosed with Lupus and being ANA negative. Roughly 5-10% of Lupus patients are ANA negative.

In 2015 Lupus tried to take my life for the first time when it attacked my G.I. system causing a complication called Lupus Enteritis. This is a rare G.I complication where the initial symptoms included severe G.I. discomfort and distension. My dog, Riley, kept wanting to be near me and eventually wanting to lay on my stomach. Eventually by the time I got to the hospital I was vomiting blood. So, it shows that Riley was right and to never question a dog’s instincts! The diagnosis was distinguished between a Crohn’s flare and Lupus Enteritis by specific imaging where there is inflammation of the small intestine, signs of wall thickening in the bowel, and mesenteric vessel engorgement. The course of treatment involved adjusting my steroid dose and my other Lupus treatments (immunosuppressive medication).

In June of 2017 I was admitted to the hospital for G.I. bleed. Now, even though this wasn’t 100% Lupus related, I feel it’s an important part of my Lupus journey for a couple of reasons. The reason for my G.I. bleed was because of a prescribed dose of Ibuprofen that I was taking for years. In dealing with joint pain since a young age, doctors put me on a strong dose of Ibuprofen to help with my pain. The G.I. bleed was significant enough that I needed a blood transfusion and made my iron anemia even worse. After, this my Lupus treatment needed adjusted yet again and it took a while for my body to recover back to my “Lupus normal”.

In October of 2017, one day I went to get out of bed after waking up and all of a sudden fell to the floor. My legs were not working, nor could they hold my weight (all of the 95 pounds I weighed at the time) if I managed to stand with assistance. After getting to the hospital and extensive testing and bloodwork, the ruling was that Lupus attacked my Central Nervous System and therefore affected my legs and ability to walk. I was in the hospital for quite a few days on a high pulse of IV steroids at 1,000mg for three days and started receiving physical therapy inpatient. Upon discharge, my steroid dose was at 60mg for several months and physical therapy two-three days a week for months. My whole way of life changed as I was no longer the same functioning 20-some-year-old I was used to being. I went home from the hospital in a wheelchair. Also, we could not return to our same apartment that had stairs leading up to the apartment. We moved in with friends that lived in a one level ranch for a couple months until I recovered some and made our apartment more handicap accessible. At physical therapy before learning to even walk, I had to learn to stand. My legs were needing strengthening in every sense. After learning to stand could I work on walking the length of a hallway all while working on balance as well. Eventually, after months of being in a wheelchair, I went to walker, and then to a cane. It was a long couple of months, but I knew that I could do it with hard work. To this day I don’t normally walk with any type of assistance device, but that doesn’t mean never. There are some random days and other days, specifically during a Lupus flare, where there is some kind of misfiring between my brain-leg connection. During this time, I physically have to think of each step while my legs are weak and I feel like the air dancers/inflatable tube men outside car dealerships. At this time, I use at least a cane if not a walker and while one of my worst fears is endeavoring the same situation where I would need my wheelchair again, I know I could overcome it since I’ve done it once before.

I have failed multiple medications for Lupus such as Imuran, Benlysta, Rituxan, Plaquenil, Humira, and Cellcept. Imuran gave me a complete systemic reaction and mostly G.I. complications and side effects while Benlysta, Rituxan, and Humira all gave me some combination of rash, hives, and becoming anaphylactic. The biggest disappointment however was Rituxan because while on Rituxan, that was the best I had ever felt and the best my Lupus had ever been under control. I had been on it for years without any complications then out of the blue, this allergy came into the game, and it stopped all progress. Lastly, Plaquenil had to be stopped because of retinal toxicity. Thankfully my doctors and I were always diligent about getting my eyes checked and visual field checks.

Note: I have not talked about all the medications I’ve tried or are currently on because not only would this section be entirely too long but as we know with Lupus medications are always being tweaked and changed as disease activity changes.

Other Random Facts About Me and My Lupus Journey

·      Lupus is in and has affected several of my organs (heart, lungs, and brain)

·      I have adrenal insufficiency from chronic steroid use (used for disease management and unfortunately a G.I. doctor weaned me incorrectly, completely shutting down my adrenal glands causing a major health scare and complication)

·      Rheumatologic Diagnoses – Rheumatoid Arthritis, Raynaud’s, Sjogren’s, Osteopenia, Chronic Costochondritis, Type II Diabetes (brought on my chronic steroid use), Malar rash, Photosensitivity, Small Fiber Neuropathy, MGUS, Hypogammaglobulinemia, Chronic Vitamin D deficiency, Vitamin B12 deficiency, Iron Deficiency Anemia, Livedo Reticularis, hair loss, mouth and nose ulcers, exhaustion, nausea, heat sensitivity, and low-grade fevers

·      Heart – Chronic Pericarditis (at one time they even contemplated removing my pericardium because of the amount of pain, inflammation, and constriction it was causing my heart), Sinus Tachycardia, Sinus Rhythm, PVC’s, and Chronic chest pain, Prinzmental angina

·      Brain/Neurological – Stroke, Reoccurring TIA’s (mini strokes), Chronic migraines/headaches, Absence seizures, Myoclonic twitches, cognitive issues/memory issues/brain fog

·      Lungs – MZ-Alpha-1 Antitrypsin Deficiency, Pulmonary Nodules, Bronchiectasis, Bilateral perihilar bronchial wall thickening, Hypoxia, Reoccurring Pneumonia, Reoccurring pleurisy, shortness of breath, chest pain, and wheezing

·      Of course, there are other health issues not exactly related to Lupus but still a major part of my health journey: several G.I. issues/conditions, Endocrinology issues/conditions, Lymphatic issues/conditions, Hematologic issues/conditions, Hepatology issues/conditions, Dermatologic issues/conditions

Despite all that I have going on, one of my phrases I live by is, “Learn to play a poor hand well”. Like any good game of cards, the rest of the world doesn’t know what you have, as it is with Lupus. Even on days when you feel like you’ve been dealt a crappy hand, you can either fold or play through it. Giving up is not an option for me, I always persevere and push through. I have learned this positive attitude and perseverance through my mom and that is why I am who I am and also why I am here today!