Thirty-One Faces of Hope: Loryn Brinson Lewis
The lupus community includes people living with lupus, friends, family, and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Meet Loryn Brinson Lewis
11/24/09 (21 years old) - Cooper was born! Most amazing day! Epidural took two sticks and eventually my left leg went numb after delivery. Fast forward several months and back pain is increasing. Migraines become a part of my life! Yuck!
3/20/10 - Matt and I get married. Little did we know we would be living out "the in sickness and health" so soon!
2010 - start working full time all why my back pain is getting so bad, but scans only show "minor bulging discs." Insert PT time.
6/2011 - I start noticing left hip pains that are not going away after doctor visits and shots! Here's where I have to start taking Tramadol around the clock.
2012 - here starts the joint pain, muscle pain, fatigue, weight gain, irritability, sores all over that won't heal. Labs show positive ANA, and all inflammatory markers are up. 8/2012 - see a rheumatologist who diagnoses me with SLE, then no, then fibromyalgia, then parvovirus, then no! Lots of sticks and X-rays with no answers! I was so fatigued that I would sometimes steal a few naps during lunch on exam tables! Tried handfuls of different medications with no help! Got 6 nerve blocks in my back that were more pain than help! Had a CT Myelogram to get a better look at my back. No new findings, just caused a spinal fluid leak which gave me the worst headache of my life. A blood patch 7 days later eventually helped. I also was now having traction done on my back to help with the terrible nerve radiation paid into my left butt cheek and thigh! I also had tons of shots for bursitis in my back and hips this year!
2/2013 - Finally get an appt to see my Mama's beloved Rheumatologist, Dr. Mossell!! I honestly was a mess. At this point I had been hurting for 3 years and looked fine for the most part. No one could see the agony I was facing. I looked fine so I felt like no one believed me!!!! I was so depressed because constant pain will do that to you! Dr. Mossell is an amazing doctor. Most importantly, he listened and reassured me that he was going to find out what was wrong. My mama had been seeing him for 2 years as she has Cutaneous SLE. At the same time, my cousin (on my mom's side) was being worked up by Dr. M as well because of joint pain and swelling. He initially drew 19 tubes of blood then sent me for X-rays of my feet, hands, hips and back. Also had to see the urologist for chronic hematuria.
3/2013 (25 years old) - results are in! Dr. Mossell says things are pointing toward SLE. I have osteoarthritis in my hands and feet! At 24! Urologist diagnosed me with Cystic Metaplasia. Chronic, benign bladder issue. At least no bladder involvement. I have to see a dermatologist to biopsy some skin rashes and my pretty "pink skin." Dr. M tries more anti-inflammatory, Plaquenil (anti-malarial drug used to lower immune system), Lyrica to help with all of the back and widespread pain that is now constant! Biopsy results show SLE! Mind you that's how my mama was diagnosed! My cousins bloodwork shows positive for SLE two weeks later! Her symptoms began after her daughter’s birth 5/2009.
2013-2014 - more MRI's and thousands of dollars’ worth of bloodwork. Labs are positive now at this point. I was taking 16 meds along with weekly shots of Methotrexate. Still completely miserable. The pain was now constant x 4 years! If it wasn't for the comfort, I received from Jesus I would have been so hopeless!
10/2014 - diagnosed with interstitial cystitis and given four new meds to try. I left my job for a slower paced job, which I love, and which has helped with my stress. I also started the drug , Benlysta, which is a monthly infusion that costs 22k a pop! I have had 12 treatments yearly of the Benlysta for 5.5 years now with really no physical changes to my health.
So that brings us to now! I am now off of the Methotrexate because it caused my liver functions to be up. Still taking the Benlysta! The pain is constant...sometimes mild and sometimes moderate. I still take around 20 pills a day but I’m hoping to be able to lower that number. I’m closing in on 50k in medical bills since the initial doc visits along with the tests done and the 7 years Of Benlysta. There are good days and bad days. I don't have time to be sick. I have lost 65lbs in the last 2 years or so and I have to say my joints do not stay as swollen. I don't feel as puffy and miserable as before. I have a 10-year-old that needs his mommy! I am thankful to be surrounded by people who pray and encourage me. If it wasn't for Jesus' grace, I would be a mess. I know I will be healed of this awful disease either here on this earth or in heaven. So, here's my story and that's why I'm so passionate about finding a cure for this terrible disease. There are three very different cases in my family. I know there are people who just look at me and see a lot of weight gain and that's it. But can't see anything else that lupus has caused except for the back/hip pain gimp walk, pain all over in muscles, weight gain, Sjogren’s disease (severe dryness to eyes and mouth), bright red patches on my skin, hair loss... the sun causes me to burn and now I am getting dark patches even when I am completely covered up when outside. The pain comes from the Lupus and Fibromyalgia. I Basically feel like I've been working out hard...obviously not 😂. My muscles ache from little movement. My joints get stiff and painful...worsening with cold, rain and heat. All combined I walk like an 70 year old at times. Lupus has been turning my mama's life upside down for a while now. She also had a gallbladder removal and surgical repair of a labral tear twice and it took her a long time to heal. She has days where she can't get out of bed. The pain is intense. That's another thing...Lupus causes healing to slow down and it takes forever to get better. I just hate I have to watch her go through the same things and stay positive for her. I don't want to tell people who are suffering..."I wish it could get better, but it's something you will deal with forever."
10/2020 - I had Covid-19 and developed double pneumonia (with no cough)! I was so sick with headaches, nausea, the worst fatigue I’ve ever experienced and terrible body aches. I was down for about 3 weeks. Talk about miserable! I was vaccinated at the beginning of 2021 because I can promise you, I don’t want that mess again!
5/2021 - I recently changed over from Benlysta infusions after 6 years! I now take a weekly Benlysta injection at home! So far, I haven’t had any bad side effects other than being really tired after. I’m more active than I’ve been in 10 years. I love working in my yard when I get a chance, which is something I was never able to do before. The pain never leaves. It’s just a part of me now. I do have times where mentally and physically I want a break from it all. I’ll cry it out and get over it. All praise to Jesus that it’s not worse and my organs have stayed healthy!
5/2022 - Now, 34 years old. still rocking along. Feeling the best i have felt in years until I have decided with my docs help to change the regimen up a little bit. Still dealing with the pain but no organ involvement. Praying that this next year brings some exciting things for our family. 🥰
Maybe one day we will have a cure. Before you judge a person, realize that they may be suffering from something that you can't see. Unfortunately, this disease does not have a cure and will haunt me the rest of my life! More people have lupus than cancer in the state of GA, but no one has a clue! A lot of friendships and regular relationships are changed by this disease, unfortunately! People do not know how to deal with the chronically ill people. Others just could care less! Just wanted you guys to know what I care so much but more importantly why I still have joy through all of it--Jesus! 💜💜💜 #lupus #lupusawarenessmonth
I was a miserable person when my symptoms started, y’all. All praise is due to the man above because He has brought me this far and is continuing to improve me. Lupus is real and it affects a lot more people than you know. No one wants to be bothered with hearing about invisible illnesses. I think it’s time that changed.
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