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 60-year-old Lupus warrior who was diagnosed officially in 2006, but like many with Lupus I was sick for so many years before my diagnosis. However, like my daughter Gabrielle, my health journey does not start when I was diagnosed with Lupus. Growing up I had various health complications or things that now looking back I can say, “Oh yeah, that is definitely auto-immune related!”. In middle school I started battling migraines (which I still suffer with today) and had gotten chicken pox. In high school when I was getting my wisdom teeth removed, I ended up hemorrhaging, and coding. At 14, I got a severe case of Shingles (which we know is a part of the chicken pox virus). Lastly, in my senior year of high school, I got Mononucleosis. Research has shown that there is a strong correlation between Mono and Lupus because Mono can either trigger Lupus development or Lupus patients are more likely to get the virus that causes Mono.

 As I approached my 30’s, my health conditions seemed to multiply and get more complicated all around the time I had my first Transient Ischemic Attack (TIA), aka a mini stroke. I was struggling with my health and feeling worse and worse in many aspects and unfortunately family life was getting more difficult too. I was having more G.I. complications and Rheumatologic symptoms. I was first diagnosed with Crohn’s disease and Celiac disease amongst other auto-immune diseases that come along with those but not yet Lupus. I was still feeling awful for many years and not too many doctors took me seriously or believed how awful I truly felt. I was told multiple times, in various ways or a combination of the next couple of phrases, “you’re a woman”, “go home and take a nap”, “you’ll be fine”!

It finally took my PCP at the time to run some bloodwork and after the results, he said that I had Lupus. After my initial Lupus diagnosis, I saw one or two Rheumatologists who were not so good unfortunately.  At first, I was given five years to live and after the initial shock, I said, “No, I have children, you have to do better”! The next doctor said, “Well you may have 10 years to live” and again I said NOT ACCEPTABLE! So, I began to research and learn as much as I could about Lupus and advocate for myself. I stayed positive and optimistic and found Dr. Fotis Koumpouras. Dr. Koumpouras was amazing and this is where my Lupus journey then got on the right path. Along with my Lupus diagnosis, other auto-immune diagnoses soon followed too (joint pain & swelling  Rheumatoid Arthritis; Small fiber neuropathy; Factor V Leiden; Lupus Antiphospholipid; photosensitivity; chronic Pericarditis; Raynaud’s; Sjogren’s – just to name a few)!

All of this research, education, and optimism helped not only me but Gabrielle because soon she began to show similar symptoms. Even with my knowledge and battles through my own journey, Gabrielle now had her own battles too, but we fought together and supported each other.  Gabrielle stayed strong and positive through her Lupus journey and eventually was able to see Dr. Koumpouras as well.

Due to two clotting disorders, Lupus Antiphospholipid and Factor V Liden, along with the increased risk for a stroke with just being a Lupus patient, I have had several Transient Ischemic Attacks (TIAs), aka a mini strokes. At this point it is hard to keep track, but I would say close to 10 since my 30’s. With each passing one I seem to have a longer recovery time and more lingering side effects.

Since we know that Lupus leaves you with a lower immune system and taking immunosuppressive medications, reoccurring viruses are a commonality. Since I had Chicken Pox when I was young and Shingles when I was a teenager, there was always the possibility of getting Shingles again. Lupus did cause me to have Shingles two more times later on in life when I got older.

In 2017 Lupus attacked my bladder giving me chronic and reoccurring UTIs to the point where I was having two UTIs a month for two years! I couldn’t go onto a regular antibiotic as I am allergic to so many. We would have to wait for the culture to come back and see what antibiotic I could take. More often than not, between the strain and between what medication I was allowed to and what actually worked for that specific UTI, I ended up getting PICC (Peripherally Inserted Central Catheter) line after PICC line. Do to the constant and reoccurring infections, I almost ended up with an ostomy bag because this led to other bladder and G.I. complications. Since PICC lines are common to infection, eventually this led to the decision to get a Port. Now, my Port is used for long term intravenous medication usage like my infusions (Benlysta).

In 2024 I had an MRA, (Magnetic Resonance Angiogram is a specialized MRI scan that uses magnets, radio waves, and a computer to create detailed 3D images of blood vessels, detecting issues like clots, blockages (stenosis), aneurysms, or weaknesses in arteries and veins without using radiation), this scan showed that I had vasospasms on the left posterior part of my brain. These vasospasms cause the blood vessel to constrict and spasm in my brain causing at the minimum headaches and migraines and can lead to stroke. Do to all the neurologic and CNS involvement, my Lupus has caused, doctors believe that my Lupus has caused these vasospasms too. To help treat these vasospasms, my doctors have put me on another medication called Amlodipine.

Like many, I have been on or tried various medications for Lupus. I have developed side effects or allergic reactions to some. One medication being Plaquenil (Hydroxychloroquine) which I eventually developed a rash and hives to. Over the years, I most recently started the infusion Benlysta. However, during COVID (2020), doctors did NOT want me to continue going into an infusion center because of my very low and compromised immune system. So, they wanted me to switch the Benlysta auto-injector at home, which is weekly instead of the monthly infusion. The auto-injector did not go well. I was horribly sick, mostly severe G.I. symptoms for six days, then on the seventh day it was time for next dose. I had to stop the Benlysta auto-injector and since we weren’t sure what exactly was causing the symptoms (the Benlysta itself or the dosage/frequency of the Benlysta auto-injector) I got switched to Rituxan. At the end of 2023, my first Rituxan infusion went well! Then, in 2024, six months later when it was time to do the second infusion, I developed severe neurologic and CNS side effects. It worsened my small and large fiber neuropathy, which then worsened my walking, gait, and stability. It also worsened my migraines and began having numbness and tingling in my face and hands as well. So, after stopping Rituxan, we decided to give Benlysta infusions another try. Since June of 2024, I receive my infusions at Hillman and thankfully am doing well!

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, brain, and bladder)

·      I have adrenal insufficiency from chronic steroid use (used for disease management)

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

·      Heart – Chronic Pericarditis, PVC’s, SVT’s and Chronic chest pain/Prinzmental angina

·      Brain/Neurological – Reoccurring TIA’s (mini strokes), Chronic migraines/headaches, constricting and spasming of the blood vessels in the brain, vasospasm, and cognitive issues/memory issues/brain fog/word finding issues not only from regular Lupus affects but also from reoccurring strokes

·      Lungs – Pleurisy, Pulmonary Fibrosis, MZ-Alpha-1 Antitrypsin Deficiency, Pulmonary Nodules, Bronchiectasis, Pleural-parenchymal scarring and thickening bilaterally in the upper lobes, Reoccurring pleurisy, shortness of breath, and chest pain

·      Hematology – Factor V Leiden, Lupus Antiphosphilipid, Vitamin D & B12 deficiency, iron anemia, low IGG, IGA, IGM, and IGG subclasses, CVID – Common Variable Immunodeficiency

·      Urology – Recurrent UTI’s, protein and blood in urine, chronic kidney stones, Interstitial Cystitis

·      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, Ophthalmology issues/conditions, Endocrinology issues/conditions, Dermatologic issues/conditions.

As I have said before, I would not be where I am today if I did not do my own research, keep a positive attitude, and become my own best advocate and because of that, become Gabrielle’s best advocate as well. Even with mine and Gabrielle’s Lupus diagnosis, we have each other to lean on and go through this journey together. We support each other always and we are each other’s person. I am grateful for each day, and I know each day is such a blessing.